▶ 0:13:47Health outcomes. Lowering long term costs and moving towards a healthier nation. Investments in initiatives such as disease surveillance. Community based programs and health education enable more effective responses to both everyday health challenges and emerging threats. Early detection saves lives. By prioritizing prevention, we can help individuals make informed choices and employ them to act sooner. Empower them to act sooner over time.
▶ 0:14:14These efforts also help reduce strain on our healthcare system by decreasing avoidable hospitalizations and emergency care. Today, we'll be discussing ten bills that address the public health and wellness of our country. One of these bills is h.r. 4348, led by representative chris smith from new jersey and representative doggett of texas.
▶ 0:14:35This bill would reauthorize the kay hagan tick act, which developed a national strategy to address vector borne diseases like lyme disease, improve surveillance, and coordinate federal programs. Representative smith has been a lyme champion for decades, as new jersey is one of the states most impacted by the disease. The bill is named after senator kay hagan, who unfortunately passed away from complications of a tick borne virus. And I can say it right.
▶ 0:15:03Powassan virus tick borne illnesses are spreading quickly in our country. There are many tick borne illnesses, and we have only scratched the surface in understanding these diseases that continue to have devastating impacts on our communities. Virginia consistently reports some of the highest annual rates of lyme disease in the united states. With my district of southwest virginia and southside virginia having some of the highest rates of lyme and other tick borne illnesses.
▶ 0:15:30Virginia tech in my district is doing research on lyme disease and other tick borne illnesses in our various communities. We will also be discussing h.r. 8205, the accelerating access to critical therapy act for als. The als act, led by representative ken calvert from california and representative quigley from illinois, would reauthorize the act for als program that supports initiatives to accelerate research and expand access to investigational treatments for
▶ 0:16:00People living with als and other neuro degenerative diseases. Although progress has been made, there is still no cure for als. Um, I have known a number of people. It appears that I live in a hot spot. Uh, one of my mentors, former house of delegates member raymond r robberecht, uh, died from als in 1994.
▶ 0:16:25Um, a friend of mine in the roanoke valley, rob lawson, died from his battle with als in 2022. And eric dane, best known as doctor sloan, aka mcsteamy in the show, gray's anatomy, came to many of our offices last year to advocate for als and share his experience. Unfortunately, he lost his battle with the disease earlier this year.
▶ 0:16:49We hear these heartbreaking stories too often in our communities, and this is regrettably, the reality for many who are diagnosed with rare diseases and neuro and neurodegenerative diseases. I trust reauthorizing this bill can help bring hope to those families afflicted by these diseases. Another bill is h.r.
▶ 0:17:113747, the accelerating access to dementia and alzheimer's providing training act, led by representative balderson from ohio and representative barragan from california. This legislation would reauthorize a program that helped helps increase access to specialty care services in rural and underserved areas by training clinicians through project echo, models, of which there are multiple in virginia.
▶ 0:17:34Even though the language of some of the community health center bills are still being negotiated, I would be remiss not to mention their critical role or to mention the critical role the community health centers play in supporting our nation's health. Many of the other bills we will examine place a strong emphasis on prevention, physical activity, nutrition, education, research and innovation, workforce development and other initiatives to uplift our nation's public health.
▶ 0:17:58I'm eager to hear from our witnesses about how we can improve outcomes across the country. And now, and I yield back and now recognize the subcommittee's ranking member, representative degette of colorado, for her five minute opening statement. >> thank you so much, Mr. chairman. Mr.
▶ 0:18:15Chairman, today, the bills that we are considering target many facets of public health from school based health centers that provide care where students spend most of their time, to increasing awareness of alzheimer's, breast cancer and tick borne diseases. We're also considering legislation to reauthorize a national program to connect stem cell donors with recipients, and a program supporting groundbreaking research that just may lead us to a cure for als.
▶ 0:18:43These bills extend successful programs so that they can continue to benefit the american people. Take the adapt act by congress, congressman balderson and congresswoman barragan, for example, which reauthorizes project echo to help primary care providers deliver high quality care to patients no matter where they live. Primary care doctors are the clinicians who are most likely to catch the warning signs of dementia, after all, and they adapt.
▶ 0:19:11Act will create a new new focus in project echo to make sure doctors around the country are trained early and accurate on diagnosis of alzheimer's disease, which impacts more than 7 million americans. Take also the act for als reauthorization act, which puts the nih and fda in partnership to support patient centered drug development programs and early access to promising therapies.
▶ 0:19:40And I'm all too familiar, Mr. chairman, with this disease, because I lost my father in law to als. It is a devastating disease and one that we need to find a cure for. Congress passed the original act for als in 2021 with overwhelming bipartisan support, and this reauthorization puts us one step closer to the cure for this debilitating disease. These bills and more will allow the critical work of public health programs to continue and improve for years to come.
▶ 0:20:11Millions of students can continue to receive primary and behavioral health care at school, and hundreds of thousands of patients will be matched with stem cell donors. We will also consider legislation to give community health centers across the country new resources to provide comprehensive care to those who need it most.
▶ 0:20:28This is what our constituents demand of us as the powerful energy and commerce committee, and as the first branch of government, we're capable of crafting and advancing durable policy solutions to the toughest health problems, but only when we vigorously exercise the powers afforded to us in article one of the constitution. That means working together to strengthen trust in our government, which requires us to honestly examine its shortcomings.
▶ 0:20:58It means designating innovative federal programs and demanding that they be faithfully implemented. Likewise, we cannot turn a blind eye to the policies and practices that make our country sicker and more expensive. Most of all, it means being representative to the people we represent. That's why I'm so grateful that we are joined by our witness panel today, who are true experts in their field.
▶ 0:21:25These individuals have decades of patient, provider and innovator experience among them, and each are tireless advocates for improving health in their communities and in this country. I have to single out doctor bram because I'm going to tell the committee, you need to believe every single thing she says, because she is my doctor. So you know she's right. I look forward to hearing their perspectives today, without which we cannot effectively legislate.
▶ 0:21:54I want this committee to live up to its storied history and to return to working not just on reauthorizations, but bold reforms that will improve lives. Because routine hearings to reauthorize programs that have bipartisan priorities are absolutely the bare minimum.
▶ 0:22:14When this subcommittee comes together to listen to experience and expertise, to follow the science where it leads, and to protect federal programs proven to work, we live up to our constitutional mandate for the betterment of the people who sent us here. Following almost a year and a half of rank partizanship in this committee of ignoring the priorities of the people we represent of zero accountability for the reckless administration. Frankly, this hearing is a breath of fresh air.
▶ 0:22:43But it should be the rule, not the exception. Disease impacts everybody, not just democrats, republicans, or even unaffiliated people. Everybody. And so, Mr. chairman, I urge swift consideration of the bills before us today. I look forward to my colleague's collaboration to reclaim and vigorously exercise congress's authority on behalf of our constituents, and I yield back.
▶ 0:23:09>> thank the gentlelady for yielding back and now recognize the gentleman from kentucky, the chairman of the full committee, Mr. guthrie. >> thank you, Mr. chairman. Thank you for having this hearing, and thank you for all of our witnesses for being here today. And and I will say, um, there is absolutely bipartisan support to getting to solutions and getting to resolution, getting to, to better cures and better service. And both sides of the aisle know people. If you watch cable tv, you probably don't think so, but we absolutely work together.
▶ 0:23:35I know the chairman, the ranking member, the full committee staff work together to put this hearing together. Bipartisan, completely 100%. And proud to do proud to say that and proud that it was. And so because we're looking at key programs that aim to improve access to care, support efforts to combat chronic conditions, and strengthen research opportunities for certain neuro degenerative diseases. According to cdc, we spend about 4.9 trillion on health care costs annually.
▶ 0:24:03Of that cost, about 90% go towards chronic conditions. The trump administration has placed an emphasis on helping to mitigate chronic disease. And as part of our work to advance that shared goal, we will examine policies like nutrition education and chronic disease prevention and community health centers act to promoting physical activity for americans act, the school based health center reauthorization and early act reauthorization.
▶ 0:24:29We'll also examine programs designed to increase access to life saving treatments, for example, the stem cell therapeutic and research authorization act continues the flow of resources for the c.w. Bill young cell transplantation program, which provides assistance to patients who are in need of a bone marrow or cord blood transplant. Nearly 30,000 people in the united states have been diagnosed with als. This disease is devastating.
▶ 0:24:56It causes nerve cells to stop working and die and ultimately leading to paralysis. And no one knows for sure what causes the condition. So we must continue to empower researchers to work to develop, care. And thank you for your advocacy. I know you speak for so many people, constituents that I've gotten to know personally and well that I've suffering with with als.
▶ 0:25:15So thank you for being here with us again and your continued advocacy and the act for als authorization will further advance the research initiatives and public private partnerships designed to accelerate treatment for als. We're racing against time. We know that. And we are. That's why we're here working together. And while this. There's more important work to do, each of these bills will discuss it. I represent valuable steps towards a healthier america.
▶ 0:25:39I want to thank my colleagues who are leading the discussion on these bills and on these solutions, and to the many challenges in our expert witnesses and advocates who are here with us today. I appreciate it very much, and I will yield back. >> gentleman yields back. Now recognize the ranking member of the full committee, the gentleman from new jersey, Mr. pallone. >> thank you, Mr. chairman. I'm pleased we're here today to discuss important legislation, but I can't ignore what republicans are doing to america's healthcare. While touting bipartisanship.
▶ 0:26:07The republicans big, ugly bill cut more than $1 trillion from america's health care insurance premiums spiked for 20 million people because republicans refused to extend the aca tax credits. 15 million people are projected to lose their health care altogether, and hospitals are closing in record numbers across the country. There was a report yesterday in my home state of new jersey that there were 15. There are 15 hospitals that could face closure because of the big, ugly bill.
▶ 0:26:35And now there are reports that republicans intend to make further cuts and take health care away from even more people to pay for trump's war in iran and in trump's america. We can't afford health care, according to the president. But apparently we can spend $1 billion a day in a war with iran. In fact, trump himself said that it's not possible for the federal government to pay for medicaid and medicare when we're fighting wars.
▶ 0:26:58So that's the environment in which we're meeting here to consider a number of bipartisan bills to reauthorize important public health programs, including the school based health centers reauthorization, led by my colleague, representative tonko.
▶ 0:27:12And school based health centers fill an important need by bringing health care right into schools, by providing a combination of primary care, mental health care, case management, dental, health and nutrition education directly and school based health centers reduced barriers to care, particularly for children who don't have access to a family doctor.
▶ 0:27:30We'll also discuss two bills that aim to expand access to care at community health centers, expanding community access to health services acts would increase access to mental health and substance use services, and provide funding for health centers that don't already offer those services. We're also considering language that would expand nutrition education and counseling at health centers. Nutrition is a huge component of overall health, and I support the intention of integrating these services in a more comprehensive manner.
▶ 0:27:58However, I am concerned that the draft, in its current form, draws on existing funds for health centers. I hope that the chairman and I can work together to ensure that this initiative would not in any way cut funding from existing services. We also are going to discuss two bipartisan bills that address very different diseases that share a common mission of saving lives. About 16% of all new breast cancer cases in our nation occur in women younger than 50, where it's likely to be found at a later stage and often more aggressive and harder to treat.
▶ 0:28:30The early act supports cdc led education, outreach and provider training to close detection gaps, empower early action by women, and ultimately save lives. And then there's the kay hagan tick act, named after the late north carolina senator kay hagan, who passed away in 2019 from a rare tick borne virus. It takes a three pronged approach to combating tick related diseases with the hope of helping improve early detection, treatment and public awareness.
▶ 0:28:57We're also discussing the act for als act, which we first authorized in 2021 to help foster the development of safe and effective therapies for those afflicted by als and other rare neurodegenerative diseases. And today, we have the co-founders of emails here to speak to the impact of the law on patients, on caregivers, researchers, and the scientific understanding of als and other rare neurodegenerative diseases. Brian wallach testified before our committee on this legislation in 2021.
▶ 0:29:27And your powerful testimony at that time, along with your advocacy, played a critical role in getting the legislation passed and signed into law. And it's great to see you, and I'm grateful to you for testifying again today. We'll also discuss a bill related to recent fda guidance on some digital health tools.
▶ 0:29:47And this guidance provides clarity about fda's thinking on which clinical decision support, software functions and general wellness devices will fall outside the agency's regulatory framework. While I believe that some of these technologies are helpful tools for consumers can help them from managing to manage their health. I also believe these there are questions around ensuring safety of the products and privacy that need to be addressed so we can protect consumers.
▶ 0:30:13So, uh, you know, I don't want to take away from these bipartisan bills are all very important. But I have to say in closing, again, I'm very, very concerned about the impact of this big bill on health care, uh, because it is shown how damaging it is in terms of health care around the country, in my state and across and across the board.
▶ 0:30:36And it seems like the republicans and the president want to continue with these cuts in health care, which is really unfortunate, I yield back. Mr. chairman. >> gentleman yields back. That concludes our member opening statements. The chair would like to remind the members of the committee that pursuant to committee rules, all members opening statements will be made a part of the record. We want to thank our witnesses for being here today and taking the time to testify in front of the subcommittee.
▶ 0:31:02Although it is not the practice of this subcommittee to swear in witnesses, I would remind our witnesses that knowingly and willingly making material false statements to the legislative branch is against the law. Under title 18, section 1001 of the united states code, you will have an opportunity to give an opening statement, followed by questions from the members. Our witnesses today are jamie ulmer, uh, m a president and ceo, health care network.
▶ 0:31:27Uh, doctor rachel brown, uh, co-founder, chief medical officer, brehm foundation to defeat breast cancer and professor and vice chair emeritus, the george washington university and doctor to diana degette. Uh, holly ahern, uh, associate professor of microbiology, state university of new york, adirondack.
▶ 0:31:53Amy l rothenberg, uh, nba chief executive officer, national marrow donor program. Rene quashie, jd, vice president, digital health, consumer technology association brian wallach and, uh, sandra. Uh, brevia, uh, founders of I'm a l s and, uh, who have been here before and had very moving testimony, uh, previously.
▶ 0:32:23So we look forward to your testimony today as well. For committee custom, each witness will have the opportunity for a five minute opening statement, followed by a round of questions from members. The light on the timer in front of you will turn from green to yellow when you have one minute left. I now recognize Mr. ulmer for five minutes to give his opening statement.
▶ 0:32:43>> good morning, chairman griffith, ranking member degette, chairman guthrie, ranking member pallone and members of the subcommittee, thank you for the opportunity to testify today and for your continued bipartisan leadership in recent investments in community health centers. I also want to recognize this committee's work to secure additional funding through the consolidated appropriations act. That support comes at a critical time.
▶ 0:33:10These resources are already making a real difference by expanding access to care, stabilizing the workforce, and helping health centers like ours remain trusted anchors in our communities. Quite simply, your support is saving lives. My name is jamie ulmer. I serve as president and ceo of healthcare network, a federally qualified health center in southwest florida.
▶ 0:33:36In 2025 alone, we served more than 56,000 patients with over 220,000 visits, including nearly half of all children in our community, and delivered $19 million in uncompensated care. But what really does this look like? Recently, we worked with a young boy who had been struggling with his health and losing weight. His mother told us he wore a hoodie every single day, even in the summer.
▶ 0:34:06And we know how hot it is in southwest florida through consistent care, including nutrition support, behavioral health services and a team working alongside this family, he began to improve and one day his mom told us something she had not seen in a long time. He stopped wearing the hoodie for her. That was a moment that she knew. He felt better, more confident and more like himself again.
▶ 0:34:35That is what timely, coordinated care makes possible. But there are thousands more children like him who we've we've not reached yet, and that is where we need your help. We know these approaches work because we see the results every day. But demand is outpacing our ability to reach everyone who needs this care. With additional investment, we can change this. Let me highlight three areas where that support would make the greatest impact.
▶ 0:35:05First, expanding access to care where patients are, especially in schools. Our school based programs help students stay in class and receive care earlier. But today, we're only reaching a fraction of the children who need this.
▶ 0:35:23With additional investment, we can bring care to more campuses, reach thousands more students, and intervene earlier before small issues become lifelong conditions. Second, investing in nutrition and prevention. Health does not begin in the exam room. It begins in the community. Programs like our wellness warrior are helping families build healthier habits.
▶ 0:35:52But when imokilly, our agriculture farm worker communities only grocery store closed, families lost access to fresh, healthy food. Overnight. We stepped in. But we cannot meet that level of need alone. With more support, we can expand these efforts, reach families and prevent chronic diseases before it starts, not after it becomes costly and complex.
▶ 0:36:21Third, strengthening behavioral health integration. Behavioral health is one of the most urgent needs we face today. We have embedded into our primary care and even our dental care, improving outcomes and reducing stigmas. Last year, we delivered more than 13,000 visits, but too many patients are still waiting.
▶ 0:36:43With additional investment, we could expand, access, strengthen the workforce and ensure patients receive care when they need it, not when they reach a crisis. Community health centers are a proven, cost effective solution. We are already making a difference, but with sustained federal investment, we can reach more patients earlier before conditions worsen and costs escalate.
▶ 0:37:10Because behind every number is a story. And with your support, there can be many more stories, like the young boy that I shared, where care does not just change health outcomes, it changes how someone feels about themself. Thank you again for your long standing support of health center funding. And to the members who sponsored this legislation that we're talking about today, these bills are incredibly important, and I look forward to your questions.
▶ 0:37:41Thank you again. >> thank you. And doctor brehm, you're now recognized for your five minute opening statement. >> thank you. Good morning, Mr. chairman. Thank you. Good morning, Mr. chairman and ranking member degette, thank you for the opportunity to address the subcommittee today.
▶ 0:38:00I'm doctor rachel brehm, professor of radiology and vice chair emeritus at the george washington university and proudly co-founder and chief medical officer of the brehm foundation to defeat breast cancer. My life's work has been dedicated to ensuring that every woman has access to early detection and life saving care for breast cancer. But this mission is not only professional, it's profoundly personal.
▶ 0:38:26When I was 12 years old, my mother was diagnosed with breast cancer and given just six months to live. She lived 44 years. Years later, at the age of 37, I found my own breast cancer. While evaluating breast ultrasound equipment. My oldest daughter was 12 at the time, so I stand before you today as a breast cancer physician, advocate researcher. As a daughter, a mother, and a survivor and I know what's at stake.
▶ 0:38:55I'm here to offer my strongest support for the bipartisan breast cancer education. Awareness requires early learning. Young. The early act. This legislation is urgent. Cancer is no longer a disease of aging. Rates in individuals under 50 have dramatically increased and breast cancer is now the most commonly diagnosed cancer in women aged 20 to 49. And in younger women, it's much more aggressive and more deadly.
▶ 0:39:26Black women under 50 are twice as likely to die from breast cancer as their white counterparts, and these are not abstract statistics their lives. And yet, despite this reality, we have no standardized screening algorithms and no broad societal recommendation for women under the age of 40 at average risk of breast cancer, no routine screening, no safety net. This is a critical public health gap because there's no system. There must be awareness.
▶ 0:39:53When there are no guidelines, there must be education. And when there's no screening, there must be empowerment. We know that early detection saves lives when breast cancer is detected, early survival exceeds 99%. When detected, late survival dramatically falls. That's the difference between life and death. While we continue to study the why, we must act on the what and what we know is this.
▶ 0:40:21Early detection works. Education works. Awareness saves lives. Congress has already recognized this gap through the early act. This program provides critical education and outreach to young women, particularly those at higher risk, empowering them to understand their risk, recognize symptoms, and seek care early at a time when there is no standardized screening. Recommendations for women under 40. Awareness is not just helpful, it's essential.
▶ 0:40:52Strengthening and expanding this effort will save lives. For the past 20 years, through the foundation, we have worked to ensure that women have access to information, screening and care. The early act meets this moment. The brant foundation empowers young women. Clearly mission aligned with the early act. The early act builds awareness where there is currently a void. Simply put, this legislation will save lives. At the brant foundation, our motto is detect early save lives.
▶ 0:41:211 in 8 women in the united states will be diagnosed with breast cancer. This is not just policy, it's personal. If my mother had not been diagnosed when she was, I would not have had a mother if my cancer had not been diagnosed early, my three daughters would not have had their mother, and I would never have had the privilege of being loving and impacting. My six granddaughters and four grandsons. And this is just not my story. This is the story of families across america.
▶ 0:41:50The early act is an opportunity, an opportunity to give every woman a chance to live, to raise her family, to contribute to our society. I urge this subcommittee to act with urgency, because early detection is not just a recommendation, it's a right and it's a right that we must ensure for every woman in this country. Thank you very much. >> thank you.
▶ 0:42:17And now I recognize and I said aherne in the introduction, do you pronounce it ahern? Which do you prefer? >> thank you, chairman griffith and members of the committee. I am holly ahern. >> ahern. Okay. And the reason that I ask, it's it's kind of fitting at this hearing is that I, um, uh, spoke on the floor one time actually back in 2018 about an earlier bill and it dealt with als in some ways.
▶ 0:42:49And one of the people that I knew was an ahern, uh, who had passed away, a lawyer in the roanoke valley. So that's why, uh, I just went naturally with that without looking at my phonetic notes that were given to me. And I apologize to you, but, miss ahern. Yes, the floor is yours. You have five minutes. >> I'm not on. I'm professor of microbiology.
▶ 0:43:16I'm also a lyme disease advocate and co-founder of lyme action network in new york state. I'm also co-founder and the chief scientific officer of diagnostics, a company with the mission of developing a clinically accurate and accessible diagnostic test for lyme disease, something that is profoundly lacking.
▶ 0:43:32But foremost, I'm a mom who witnessed her daughter go from a vibrant college student athlete who set records and achieved all-american status in swimming to bedbound paralyzed on one side, hypersensitive to light and sound, and in terrible nonstop pain. Over a ft weeks. And this was because her case of lyme and infected by the tick.
▶ 0:43:59Because early diagnosis was missed, she developed a long term chronic illness that antibiotics could not resolve. The illness goes by many names, including post-treatment lyme disease, post-treatment lyme disease syndrome, chronic lyme disease, persistent lyme disease, long lyme, and most recently, lyme infection associated chronic illness. Lyme, which is a term that was developed by the national academy of sciences.
▶ 0:44:25Currently, there are no medical consensus on the cause, diagnosis or treatment of this illness, and patients are simply left in limbo to suffer the consequences. This is not rare. This happens to millions of people in the united states who are often misdiagnosed with other conditions, including als, alzheimer's and other neurodegenerative diseases. So this is a problem that really needs to be addressed.
▶ 0:44:47And I would also like to point out the two young women behind me who are working with you on the hill on this, who are also in the in the same camp with my daughter. Tick bites make people sick. Some tick borne diseases cause long term debilitating symptoms and some are fatal, such as powassan virus, which took the life of kay hagan, a us senator. Unfortunately, the chronic illness suffered by many lyme disease patients leads to death by suicide, and I'm profoundly grateful that my daughter was not one of those cases.
▶ 0:45:17Tick borne diseases occur in all states, regardless of whether the state is considered endemic or non-endemic. For example, the risk of acquiring lyme disease from a tick in the state of ohio, which is considered a low incident or non-endemic state for this disease, is now equal to that of connecticut, the state where lyme disease originated. This is based on research from ohio state university showing that almost half the ticks that they captured and tested carried the bacteria that cause lyme disease.
▶ 0:45:47This is compared to just 2% of the ticks that tested positive in 2010. This is a 2,300% increase in the ticks that are capable of carrying and transmitting lyme disease in only 15 years. In that state, tick surveillance could be improved if the tick act is passed. Ohio recorded only 1800 cases of lyme disease in people in 2024, in contrast to bordering highly endemic state of pennsylvania, which reported more than ten times those cases.
▶ 0:46:17Does it truly make sense that there are so few cases of lyme disease in a state where half the ticks carry the lyme bacteria, or is it more likely that cases are going undiagnosed because doctors in non-endemic states like ohio are being advised that there is no disease in their state due to spotty or incomplete surveillance data? Disease surveillance could be improved if the tick act is passed.
▶ 0:46:40I included in my written testimony a recent peer reviewed publication which resulted from a scientific meeting at the banbury center at cold spring harbor laboratory. I urge everyone here to please read that paper. The bacteria that cause lyme disease can be transmitted from mother to fetus during pregnancy, resulting in adverse outcomes including miscarriage, stillbirth and fetal abnormalities. And more than 50% of newly infected women who do not receive prompt antibiotic treatment.
▶ 0:47:05The prevalence and congenital risk to fetuses, newborns, infants and children who are born to women with persistent lyme disease and the public health impact demands further investigation. The risks of tick borne infections during pregnancy could be investigated if the tick act is passed. 70% of all healthcare decisions are based on laboratory tests because symptoms of lyme disease are variable and nonspecific, laboratory tests are needed to aid diagnosis.
▶ 0:47:34False negative lab test results are common with lyme disease, particularly in the early stage of infection. Based on a budget impact model developed by an independent health economics and outcomes research. Healthcare costs that can be attributed to undiagnosed or misdiagnosed lyme disease because of false negative lab test results, exceeds $8 billion a year. An accurate diagnostic test that enables early diagnosis would decrease that burden by 42%.
▶ 0:48:03Reauthorization of the tick act would enable implementation of the national strategy to prevent and control vector borne diseases in people, and that is why I hope that you will consider passing it. Thank you very much. >> thank you. I now recognize miss. Ronneberg for her five minutes. You have the floor. >> good morning. Thank you, chairman griffith and ranking member degette.
▶ 0:48:26My name is amy ronneberg, chief executive officer of the national marrow donor program, also known as nmdp. I proudly lead an organization with a mission to create a world where every patient in need can receive a life saving bone marrow transplant. We are entrusted with operating the c.w.
▶ 0:48:45Bill young cell transplantation program, which facilitates life saving bone marrow and umbilical cord blood transplants for patients with blood cancers and blood disorders. This program houses the american registry of volunteer bone marrow donors and the national cord blood inventory.
▶ 0:49:04It also seamlessly facilitates the timely delivery of life saving cells to patients, provides end to end transplant journey support, and tracks outcomes to improve future treatments. With nmdp partner at the medical college of wisconsin, thank you for allowing me the privilege of sharing the successes of this program that has impacted nearly 150,000 patients across the united states.
▶ 0:49:30A special thank you to the program's longtime champions, congressman chris smith, and your colleagues on the committee, doris matsui, gus bilirakis and debbie dingell. They and a growing list of bipartisan co-sponsors are taking the lead to support h.r. 5160, the stem cell therapeutic and research reauthorization act.
▶ 0:49:53The program started out out of the love of a child, laura, who needed a bone marrow transplant that did not have a donor in her family. Her parents agreed to the groundbreaking idea of using an unrelated donor cells for transplant. They found a champion in your former colleague, congressman bill young, to ensure nationwide access to this life saving option.
▶ 0:50:17Like laura, 75% of patients do not have a matched donor in their family and turn to the program, which provides access to the more than 40 million volunteer donors and cord blood units. In our first 33 years, the program facilitated 100,000 transplants, and since 2019, that number has grown by nearly 50,000.
▶ 0:50:40That's an increase of more than 30% in lives impacted since the last reauthorization. Thanks to this, congratulations. Congressionally established program five years ago, only 50% of patients searching for a donor could find one today, thanks to nmdp led medical research, physicians can find a match through the national registry for 99% of their adult patients who have common blood cancers.
▶ 0:51:09This leap in transplant care reflects the power of sustained investment and innovation that are dramatically expanding access and improving patient outcomes. It is remarkable how far we have come. With a support of this committee, we have advanced from bake sales to support donor recruitment and physicians searching through index cards to identify matches to a modern, highly responsive national registry.
▶ 0:51:37Today, that registry integrates millions of donors and cord blood units worldwide into a single, searchable platform, accelerating the path to transplant for patients. Because donors inevitably age off the registry, maintaining its strength requires continuous recruitment of young, healthy donors.
▶ 0:51:58Each year, the program's robust recruitment efforts bring forward a new generation of altruistic donors, ensuring that every patient has a chance at a life saving match. This program not only recruits donors, but it also provides unrivaled logistics to deliver life saving cells. We have never missed a cell delivery, even during challenging times like the pandemic.
▶ 0:52:25This track record depends on a federally authorized infrastructure that relies on support from a wide range of federal agencies, including cdc, fda, tsa, cbp, and even the departments of state and defense. With your continued support, we can ensure this critically important program of your constituents does not expire at the end of the 119th congress.
▶ 0:52:53Like the donors who provide life saving cells, the couriers who deliver those cells, and the medical teams that deliver care, you are all heroes. Thank you for your service to our nation and for your steadfast commitment to the programs discussed today. I urge you to pass hr 5060 to continue the life saving legacy of blood cancer and blood disorder patients. Thank you. >> and for.
▶ 0:53:22Thank you and for point of personal privilege, I recognize ranking member degette. >> well, thank you very much, Mr. chairman. I just wanted to introduce our wonderful colleague, congressman quigley, who has been, um, uh, he, he has been tireless in working for this bill. And we want to thank you for coming to be with us today. Thank you. I yield back. >> I now recognize Mr. quarshie for his five minutes opening statement. Thank you sir. Thank you. Chair griffith.
▶ 0:53:53>> ranking member degette and members of the committee, thank you for the opportunity to testify on legislative proposals to improve public health, including the digital health screeners act of 2026 and the promise of health wearables. We appreciate the committee's leadership on digital health issues, especially congressman balderson and congresswoman kelly, who co-chaired the congressional digital health caucus.
▶ 0:54:15My name is renee quarshie, and I serve as vice president of digital health at the consumer technology association, or cta, the largest technology trade association in north america. Cta represents more than 1200 member companies. Most of them are middle or small sized businesses and startups supporting over 17 million american jobs and driving innovation across the us economy.
▶ 0:54:39Cta member companies are advancing technologies that improve nutrition, fitness, mental health care access, and chronic disease management. Nowhere is that innovation more visible than in health wearables. Wearables have evolved far beyond basic fitness tracking. Today, they can support earlier screening for disease, help individuals manage chronic conditions, and enable more informed conversations between patients and clinicians.
▶ 0:55:06These tools will not replace clinicians, but they can extend reach, support prevention and help patients and providers act sooner. At the same time, policy has not kept pace with this innovation. That is why cta welcomed the fda's recent updates to its approach to regulating wearables and wellness products.
▶ 0:55:27These updates reflect the increasingly blurred lines between medical devices and consumer wellness technologies, while appropriately balancing patient safety with innovation. The digital health screeners act of 2026 would codify this modernized approach. It would provide much needed clarity and certainty for developers and encourage continued innovation in low risk screening and coaching tools. Cta strongly supports this effort.
▶ 0:55:56We also recognize that industry must play a key role in ensuring trust and accountability, particularly for tools that do not require fda review. As an accredited standards development organization, cta's leading work on a new standard wearable performance and trust, which will define best practices for validating performance and outcomes across wearable technologies. We look forward to keeping the committee updated on this effort.
▶ 0:56:24While these steps represent meaningful progress, additional policy actions are needed to fully unlock the potential of health wearables. First, the united states needs a comprehensive federal data privacy framework. Today, many consumer facing digital health technologies fall outside hipaa, and companies must navigate a growing patchwork of state laws.
▶ 0:56:51A national preemptive privacy standard would better protect consumers while enabling innovation. Cta has long supported this approach and developed voluntary guidelines to help companies implement responsible data practices. Second, we must improve interoperability. Patients and providers should be able to seamlessly and securely integrate data from wearables and personal health devices into electronic health records.
▶ 0:57:20Industries already working towards this goal, but continued federal leadership will be critical to ensure consistent standards and adoption. Third, coverage and reimbursement matter many payers, including medicare, still treat wearables as optional rather than essential tools for managing health, expanding coverage for appropriate use cases would accelerate adoption and help realize the full benefits of these technologies and prevention and chronic care management, health wearables
▶ 0:57:50And consumer facing digital technologies are no longer the margins. They are widely used, increasingly sophisticated, and uniquely positioned to expand access to more preventive, personalized, and proactive care. The digital health screeners act of 2026 is an important step forward. Congress should build on this momentum by advancing clear regulatory frameworks, strengthening interoperability, supporting reimbursement, and enacting a national privacy standard.
▶ 0:58:19These actions will help patients support innovation and ensure the united states remains a global leader in digital health. Thank you, and I look forward to your questions. >> thank you. I now recognize Mr. wallach and miss a via, uh, for their five minutes of an opening statement. >> chairman guthrie, chair griffith, ranking members pallone and degette and members of the subcommittee.
▶ 0:58:47We are deeply, deeply grateful for this. Committees and subcommittees, bipartisan leadership in passing act for als, known as the accelerating access to critical therapies act in 2021. Thank you to congressman quigley, the patient community in als could not have a better champion. In huge gratitude to you and congressman calvert for reintroducing act for als.
▶ 0:59:15For those of you who are less familiar with als, let me share something today. There is a chance you could step out of this building and get hit by a car. I think we all spend an appropriate amount of time thinking about how to prevent that scenario. We teach our kids. Brian and I have eight and ten year old daughters how to look both ways before you cross the street.
▶ 0:59:41We also acknowledge that something very tough like that could happen in our lifetime. What we don't realize is that the chances of getting diagnosed with als are higher than the chances of getting hit by a car. In this room, everybody present is more likely to get diagnosed with als than to get hit by a car.
▶ 1:00:07And yet we spend almost no energy and effort as a society thinking about how to prevent als and how to cure it. And that is exactly, exactly why we are here today. Let me introduce my husband, brian wallach. He has als. Brian is a living miracle.
▶ 1:00:33Only 15% of patients live five years after diagnosis. Brian has been alive for eight years. He cannot speak or move anymore under very difficult circumstances. We came from chicago. Our caregivers drove 14 hours straight with all of brian's medical equipment.
▶ 1:01:01We left our eight and ten year old daughters with my parents, and brian insisted on being here before you today because there is nothing more important than reauthorizing act for als. Brian is not just a person living with als. He is the founder of the largest movement in als in our lifetime.
▶ 1:01:25I am als is a coalition of patients, caregivers, researchers, doctors, and advocates who know what is needed to find a cure. And while brian can no longer speak using his voice, he can type with his eyes.
▶ 1:01:41And he wanted me to share this statement, which he typed with his eyes, and which has been generated through ai being applied to old recordings of his voice. >> for eight years. I'm joined today by my wife and caregiver, sandra abreu.
▶ 1:02:07Together, we are the co-founders of I am als, a patient created and led organization representing the thousands of people living with als, their families and their caregivers. We are here with one simple and urgent request reauthorize act for als. It is the single biggest investment in als research. Reauthorizing. It is our best chance at finding a cure.
▶ 1:02:37>> brian is a former federal prosecutor, a former white house lawyer, and he helped write act for als with a core of dedicated champions in congress in 2021. Why did he do that one? Because there was not enough research funding. Two, because there was no way for patients who couldn't get into clinical trials to get access to critical, promising therapies. I am now going to tell you how act for als is solving all of these problems.
▶ 1:03:07It is our best shot at curing als. First and most important act for als is the single biggest funding mechanism for scientific research in als history. If we want als to be prioritized and drive to a cure, there is no other funding vehicle that will get us there faster. Period. Anyone who stands in the way of act for als reauthorization is standing in the way of our best shot at survival.
▶ 1:03:35Let me tell you how it is advancing scientific research. A survey of clinical trial sites showed that because of act for als, 25% of trial sites are able to offer expanded access programs, and 50% of trial sites are able to increase their research infrastructure. The headline here is that clinical trial sites across the country have been able to do significantly more research because of this law.
▶ 1:04:04This law has also funded one of the largest natural history studies for those with als and those developing als. And today, importantly, this is not just the patient and caregiver community. Everyone here should know this is leadership from the research community standing by our side. Doctor jinsy andrews is here in dc with us today to support reauthorization. She is the co-chair of neals, which is the largest coalition of clinical trial leaders in als.
▶ 1:04:33And she wants us to impart, which she will share later today, again, that this is the most important vehicle for advancing scientific research in als. Next, let me tell you how act for als is keeping patients alive today. There is a horrible thing that happens to people when they get diagnosed. Beyond getting diagnosed with als. It turns out that shortly after you are diagnosed, you no longer get qualified to get into clinical trials.
▶ 1:05:03Can you imagine being told that you have a terminal illness and that there are promising treatments in clinical trials, but because you've had the disease for too long, you can't get access. This law, all of you, today, the leaders in this room changed that reality. Today, when patients no longer qualify for clinical trials, they have another option.
▶ 1:05:29They can get treatment access through the expanded access program. There is huge demand for this across the country. There are wait lists of patients, and if we do not reauthorize act for als patients across the country, brian included, will lose access to treatments that are keeping them alive. Here is the final component where the law gets most innovative.
▶ 1:05:56The expanded access program is not only keeping people alive today, it is an incredibly unique way to accelerate research not just for als, but for alzheimer's, parkinson's, ftd, and beyond. Because of the expanded access program, every single participant has to submit their blood to a biobank. Guess what?
▶ 1:06:21That blood bank has turned into the single biggest blood bank of als biomarker and patient samples ever achieved. Guess who else? That blood bank helps scientists working on every other neurodegenerative disease.
▶ 1:06:38If I want to test the validity of an alzheimer's diagnostic test, I can go and use blood from the als blood bank as a neurological control and get an answer faster by funding aggressive, targeted research into als.
▶ 1:06:56Through this act, you are effectively funding the foundational science needed to develop therapies, preventions, and cures for the millions of americans suffering from neurodegenerative diseases as a category ftd, alzheimer's, parkinson's, and beyond. There is no other country doing this. We should be so proud. This is american leadership and it has not been matched anywhere else in the world.
▶ 1:07:25My husband asked me to close by sharing these words from him. When I last appeared before this subcommittee in 2021, I wondered out loud if that testimony would be my last. Thanks to act for als. I no longer wonder we now believe, that I can be a part of the first generation to survive als.
▶ 1:07:59What you did five years ago. Made it possible for us to rewrite the als story. Now please let us write the next chapter together and end it. Thank you. >> thank you, thank you for your testimony. We will now begin questioning.
▶ 1:08:20I'd ask the members not to begin a new question to our witness, as their five minutes is about to expire, and would encourage members to submit written questions for the record, and I will now recognize myself for five minutes. Mr. wallach and miss abbreviate the act for als program accelerated drug development, aligned fda around an action plan and help to advance new therapies for treatment of als. And your testimony was just incredible.
▶ 1:08:50And, um, the fact that that there's a chance that we can actually have survivors of als is, is amazing. Um, but you mentioned, you mentioned that it provides a model for many neurological diseases. You mentioned a number, uh, I'm also interested in huntington's. I know two families that suffer from that. And I would like to understand how we can continue the successes we've seen with als and apply it to the other diseases you mentioned, as well as huntington's.
▶ 1:09:17Do you have any further explanation of how the program can help with advancements in huntington's, as it has for als? >> absolutely. One of the remarkable outputs from act for als is that when you fund an expanded access program, you're providing additional resources to a therapeutics company to do more research, to collect biomarker data.
▶ 1:09:42And to your point, chairman griffith, to potentially test a treatment on additional disease states. So very specifically, in the last round of act for als funding, a treatment that is showing success with als was able to also be tested for Ms. because of the resources from act for als.
▶ 1:10:05And so as we continue this work, if we can reauthorize act for als, we can continue to make sure that at every opportunity we have, we test treatments not just for als patients, but we use the resources to fuel treating and testing on similar diseases like huntington's. >> thank you. Thank you very much. Uh, Mr.
▶ 1:10:27Qureshi, um, if digital health screeners act were to pass, could you give us a real world example of how a wearable would be covered and how the bill would be beneficial to individuals? >> thank you for the question, chair griffith. Uh, essentially what the bill would do was clarify what's a device and what's not a device. Um, there was a lot of confusion about that. So I think the bill does a very good job of codifying what the fda is doing.
▶ 1:10:57It also gives a reliable pathway for developers to follow as they're developing tools, uh, in terms of fitting into one of each, the two categories, medical device or wellness product, which is not, um, under fda jurisdiction. Um, for me, wearables and I think cta has, has been very consistent in this. I think the front lines of health care increasingly are not hospitals or physician's offices.
▶ 1:11:26They're on your wrist, they're on your finger. There are other parts of your body. Wearables are the first line of, of, of health care. And we need to ensure that this greater adoption of these tools by consumers across the board. >> yeah. >> you know, it's, it's amazing some of the things that they're doing with wearables. And I just have to tell you, I had an episode about three years ago with afib, which is one of the easy ones.
▶ 1:11:50Uh, when I went to see my cardiologist, didn't have to go to the emergency room, realized what was happening, took steps immediately, and then went to see the cardiologist pretty quickly. He was at first skeptical that my watch had gotten it right. And then I showed him the, the, the data which was stored in my phone. He's like, oh, that's, that's pretty good. Uh, and I think he was surprised at how advanced even something that that's been around for a number of years, uh, has gotten.
▶ 1:12:19And in fact, doctor burgess, who was a former member of this committee, former chairman of the subcommittee, uh, was one of the testers for a lot of different things with, uh, the watch and the wearables, but there's so many different ones today. And we appreciate the work that you've done there, miss ahern. Uh, I'm glad we're working on, uh, and focusing on tick borne illnesses. The administration has done a lot to put a spotlight on that. Uh, back in december, they hosted a lyme disease roundtable that I participated in as well as representative chris smith.
▶ 1:12:48Uh, and by reauthorizing the kay hagan tick act, it will go a long way in helping, uh, increase research and awareness into these viruses, but we'll still have a long way to go in combating these viruses because there's so many of them and in fully understanding them, uh, you mentioned that you're working on a, that, that there are working on a diagnostic test test for lyme disease. Can you elaborate on that? >> yes.
▶ 1:13:16Um, so I am the chief scientific officer of a company that is working on an accurate diagnostic test. Um, we are at the point of beginning fda clinical trials. Um, the test is lyme seek and it is well over 90% accurate within the first few days of infection. So I did that because it was, that was what failed my daughter. And so at that point, you know, if she had been diagnosed and treated, we wouldn't have had to suffer through long term chronic illness or she would not have to suffer. So there are other initiatives.
▶ 1:13:46You know, this is an unmet need, a recognized unmet need. Uh, the limax program is working with several teams to try again to develop a diagnostic test. So they're working to translate research. Uh, actually, virginia tech is one of those places, um, from, from the laboratory space into the commercial world. So there are options coming up. >> yes, ma'am. And I have additional questions I'll ask you on the record later, because my time is up. And I now recognize miss digit for her five minutes of questioning.
▶ 1:14:16>> thank you so much, Mr. chairman. Uh, so so we have a couple of bills on community health centers today, and I'm very happy that we're doing that, Mr. chairman, because in my community, uh, community health centers are a vital part of the health care that happens. Mr. ulmer, I want to ask you, um, would you say the patients that your health center sees, uh, predominantly have good or bad nutrition? >> I'm sorry. Could you. >> yeah. What is what is the nutrition level of the patients that are at your health center?
▶ 1:14:47>> you know, I would say, um, ranking member degette that our health center patients, uh, nutrition is about average. It's not where we would like it to be, but it's about average. >> and is that, uh, in part because, uh, frequently it's difficult for them to get healthy food in the neighborhoods where they live. >> absolutely.
▶ 1:15:12As I mentioned in my testimony, we have a agriculture farm worker community named immokalee that produces 93% of all the tomatoes we eat in this country. Um, overnight, their only grocery store closed, uh, which left them a food desert. And so to receive healthy food for them, it was tough. It was very challenging. However, as a community health center, we stepped in, we provided services with the local food bank. Uh, we actually provided that food for them.
▶ 1:15:40Other folks stepped up in the community to provide food banks as well. And so, uh, it can be quite challenging. >> it can be challenging. It'd be helpful if they actually didn't have to rely on food banks to get healthy food. Wouldn't that be fair? >> that is correct.
▶ 1:15:55>> now, um, the nutrition education and chronic disease prevention and community health centers act authorizes chcs to provide nutrition education and chronic disease prevention services in primary care delivery and workforce training, which is a great idea. But unfortunately, the bill authorizes no additional funding for those services. We all know how community health centers have been, uh, really strapped for funding.
▶ 1:16:24So I guess, I guess I would ask you if we were able to provide more funding for this nutrition, uh, work and all this work. Would that, would that help you if you had more money to be able to do your job? >> absolutely.
▶ 1:16:41First and foremost, I'd like to say that, you know, the, the counseling that we are able to provide with dieticians, nutritionists, fresh, healthy food prescriptions, connections to food pantries and even potentially grow to have teaching kitchens, community kitchens. And so when I look at what we provide from an education standpoint, it's not the total answer. It's a teamwork effort that includes our behavioral health counselors, our providers, as well as the dietitians.
▶ 1:17:12>> I got you, but how would more money help? >> more money would allow us to potentially provide community health kitchens, healthy food prescriptions. It would allow us to maybe even do community gardens to provide the service, as well as hire more dietitians and nutritionists. >> so just last week, I went in denver to a community garden in one of the neighborhoods where I got them $600,000 to build the community garden.
▶ 1:17:37But we shouldn't have to rely on congressionally directed spending. Everybody should be able to get that. I just want to turn quickly to Mr. wallach and miss abreu, because I've met you guys so many times, and I want to thank you for your courage and persistence in coming today. In your testimony, you said that fda recently asked for data from an expanded access program to supplement trial data and the approval process.
▶ 1:18:05Can you talk just for a little bit on how real world data from programs like expanded access can give a clear sign to the fda? >> absolutely. The critical data that the therapeutics company was able to secure is something called neurofilament light levels. This is actually a very relevant biomarker across all neurodegenerative diseases.
▶ 1:18:31So just a word to say that as through act for als, we understand more about neurofilament light. It will help us across all disease types, but very specifically the data that the therapeutics company was able to collect on neurofilament light levels in patients who participated in the expanded access program is now potentially going to be a part of their package for approval.
▶ 1:18:58And that truly was one of the dreams when this legislation was written. >> thank you. Thank you. So so I just want to say, Mr. chairman, this was part of the 21st century cures act that former committee chairman fred upton and I did gave the fda the ability to use real world data to inform regulatory decision making. And and there's so much more that we can do.
▶ 1:19:22I really look forward to working with you, chairman guthrie, and and ranking member pallone on expanding these these authorities because it's critical for research. And I yield back. >> and I look forward to working with you on that as well. Now, recognize the chairman of the full committee, Mr. guthrie, for his five minutes. >> thank you. And thank you for those kind words from the gentlelady from colorado. Yeah, we all want to work together to move this.
▶ 1:19:47And it did what you and former chairman upton did really changed the course of covid and all these other things. You can really see the hard work of this committee, and particularly members of this committee, the leaders of that legislation have done. And I want to thank all of you for being here. I know we talked about chronic disease, and I know the trump administration has announced new funding opportunities to expand nutrition services. We have a couple of members on our side floating ideas about how we can get more money in the pockets for healthier food. So Mr.
▶ 1:20:13Omer could can you speak to the current landscape of what kind of nutrition related services are offered at community health centers, and how can health centers be better utilized to help address chronic conditions? >> well, first and foremost, thank you for your leadership, chairman guthrie. Your long standing support for community health centers. Um, currently, health centers offers a range of wide nutrition services that prevent the incidence of reduced burdens of chronic disease.
▶ 1:20:42Um, one thing I'd like to say that I mentioned in my testimony about our wellness warrior program that we offer, it is providing a team work effort of behavioral health dietician, as well as provider for eight year olds to 13 year olds. And what we're seeing is it's not only changing the ability for that child to, uh, remove it from having diabetes, but also the entire family.
▶ 1:21:06And so with more funding in this area, we're able to do something similar to our integrated behavioral health model where we have a dietitian or nutritionist right there with the provider. They can do a warm handoff to that family and provide nutrition, education, counseling, and other types of clinical support for that child and for that family. Um, we thank you for the funding that we have received.
▶ 1:21:34Um, we noticed and do recognize, uh, in the president's bill that we received additional funding for nutrition and it's definitely making an impact, uh, with our families. >> thank you. I appreciate that. And I'm gonna ask Mr. quashie this question. So general wellness products, uh, like wearable technologies or one of the fastest growing sectors in health technology, people are monitoring their health, better products, uh, have potential to better understand the factors that contribute to chronic disease while helping lower health care spending.
▶ 1:22:02But as these technologies become more integrated into personal health management, it is important that consumers benefit from clear standards, ensuring data protection and years of safety. So, Mr. quashie, can you describe how cta is working to convene stakeholders to develop the best practices for both developers and wearers of these technologies? And then obviously, what steps should congress take to provide greater regulatory clarity? >> thank you very much. >> thank you very much for the question. We are a long standing standards development organization.
▶ 1:22:31I think we've published 35 in the in the digital health space. So we really believe standards are more likely to be developed at the speed of innovation compared to regulation and legislation. They can be a bridge to future regulation as agencies get their act together, um, and regulate. And in the absence of federal action, they are guardrails. They are able to, uh, tell us what good looks like in the absence of federal regulation.
▶ 1:22:59So for us on the wearables side, uh, wellness is not under fda jurisdiction. Uh, we don't believe there should be a wild west. So we've convened a working group to develop standards in that space, uh, to provide manufacturers, deployers, and consumers some standards and guardrails about what good looks like in the wellness space. >> okay. Thank you, miss miss einhorn. Uh, Mr. ahern right.
▶ 1:23:27As I said that correctly, uh, so vector borne diseases are major causes of death and chronic illness worldwide, with reported cases doubling over the last two decades and spreading to new geographic areas. So from your perspective, what is what is contributing to the increase of vector borne diseases and what kind of knowledge gaps currently exist? And how can the public be better informed about these risks?
▶ 1:23:57>> can you hear me now? Okay, so I don't know that there's enough time today to actually, I could go on and on and on about this for a very long time, but one of the drivers of the increase in the numbers of tick borne diseases is there are major environmental changes occurring, as we all know.
▶ 1:24:10So, you know, climate change, in addition to expanding geographic distributions of, you know, most of the vectors as it gets warmer up here, um, even up into new york city, where I live there, you know, insects and arachnids, like ticks move up close, father. So that that's something that I don't know that we are going to be able to fix. Um, it's something that needs to be addressed certainly.
▶ 1:24:36And I think tick surveillance methods, such as the one I mentioned in, in ohio, which shows exactly what I just said, are needed. And that is something that the tick act actually provides funding to work on. >> time has expired, and I'll yield back. Thank you very much, gentlemen. >> um, yields back now recognize the ranking member of the full committee, Mr. pallone, for his five minutes of questioning. >> thank you, Mr. chairman.
▶ 1:25:03As I mentioned in my opening statement, the ensuring community access to health services act would take the important step of requiring health centers to provide mental and behavioral health services, including substance use disorder treatment. But many health centers already provide these integrated services.
▶ 1:25:23In 2024, health centers treated 3.2 million people with depression and other mood disorders, 3.8 million people with anxiety disorders, and 2.8 million people with substance use disorders. However, this is only a fraction of the need. As you noted in your testimony, Mr. elmer, an estimated 7.7 million health center patients are still in need of mental health services, and 5.2 million health center patients need substance use disorder treatment. So let me go to you, Mr. elmer.
▶ 1:25:52What are the benefits of integrating mental and behavioral health services, including substance use treatment, into the care offered by health centers? And I have three questions of you. So maybe a minute each to respond. >> well, thank you, ranking member pallone. Um, you know, when hrsa enacted this about 25 years ago and provided the first bit of funding, what we saw is community health centers were able to initiate an integrated behavioral health model.
▶ 1:26:21Unfortunately, we're the only ones in the community that actually do this. And so we provide this integrated model and where a provider, a doctor or nurse practitioner, can literally hand this patient off to a licensed clinical social worker or a psychologist, sometimes the patient doesn't even know that, but we don't have enough.
▶ 1:26:40And so this funding allows us the opportunity to hire more lcs, more, uh, clinical social workers to be able to do this type of model. In my community alone, there's like one behavioral health counselor per 800 to 1000 patients. The shortage is just tremendous. And so this, uh, unmet need could be closed, closing the gap with additional funding.
▶ 1:27:11>> well, thank you. And just to follow up on what you said in 2020, for more statistics here, the health resources and services administration launched an effort to expand access to these services by investing 240 million in over 400 health centers. But my understanding is that twice as many health centers applied for the funding, which demonstrates that there's still a huge need across the country. So my second question, Mr.
▶ 1:27:35Elmer, why is additional funding important in the effort to expand access to mental and behavioral health services, particularly for health centers that don't provide these services, if you will? >> well, amazingly, about 98% of all health centers do provide behavioral health services. Uh, but that 2% is still too much. And within the ones that do provide behavioral health services, it's still a lot of people that are waiting in line.
▶ 1:28:03Um, you know, health centers are also using this funding to step into primary care addiction therapy, where we can now treat patients who are suffering from addiction. And when you think about the funding for just the integrated model, and now we're stepping into doing primary care addiction therapy, it's obviously not enough.
▶ 1:28:25And so we appreciate what we've received, but we do thank you for the opportunity to receive additional funding to close that gap of where we can take care more patients. >> all right. Thank you. Let me get to the third question. Uh, we're considering draft legislation also today that would expand access to nutrition education and counseling services at health centers. And we know that poor diets are a huge risk factor for death and disability in the us and contribute heavily to many chronic conditions.
▶ 1:28:53Um, so integrating nutritional intervention into primary care is important, uh, in order to improve health outcomes. So I want you to comment on that, Mr. elmer. The, the draft before us today seeks to expand access to nutrition counseling, but it doesn't unfortunately, provide additional resources. Can you speak to how increased h centers implement this nutrition initiative? You got about 45 seconds. >> yes.
▶ 1:29:21Well, as I mentioned before, we have a behavioral health integrated model. Why can we not do a nutritional integrated model where a dietitian or nutritionist is on the floor with the primary care provider able to do a warm handoff with that child or that adult to create better, healthier habits. We have seen the difference of this lowering chronic disease.
▶ 1:29:42And so we know, because we see it every day, that this ability to receive funding to utilize our dietitians, use nutritionists on the floor to treat our patients, creates a healthier cultural, habitual structures within that family and core to reduce chronic diseases. >> well, thank you. Thank you so much. And thank you, Mr. chairman. >> thank you. The gentleman yields back.
▶ 1:30:07Now recognize the gentlelady from tennessee, miss harshbarger vice chair of the subcommittee for her five minutes. >> thank you, Mr. chairman. And thank you to the witnesses for being here today. Um, I appreciate your testimony because as a compounding pharmacist, I've done a lot of work with tick borne illnesses, making things that are not conventional therapies for those patients. And I've done a lot of end of life care with als patients.
▶ 1:30:32Had a young 33 year old female pharmacist who ended up with intraductal carcinoma with no history of breast cancer. So those things, uh, you know, they resonate with me. They're not just words that you're talking to me about. Um, what I want to talk about today, though, is the make america healthy again agenda. And at its core, it's about prevention and addressing the root causes disease, not just treating it after the fact.
▶ 1:31:00And we're already seeing that approach take shape in hrsa's recent announcement, investing over 135 million to expand nutrition services and strengthen the workforce. So, Mr. ulmer, in your testimony, you emphasized that investing in preventative services, including nutrition and primary care, is critical to reducing health care costs. And I do have a discussion draft, the nutrition, education and chronic disease prevention in community health centers act that would help do that.
▶ 1:31:30It would integrate nutrition counseling into primary care, strengthen provider training, and support team based care models at health centers nationwide. And you highlight that health centers are already achieving strong outcomes, including 72% diabetes control and 67% hypertension control, generating billions in savings. So how does integrating nutrition and lifestyle interventions into primary care drive those outcomes?
▶ 1:32:00For patients with chronic conditions like diabetes and hypertension? >> well, thank you, vice chair. I, I want to go back to the model that I presented with our wellness warriors program. We literally identified children who were borderline diabetic from the ages of about 8 to 13. Mhm. Um, our director of pediatrics brought these children in. It's about 200 children that we currently have that we're monitoring.
▶ 1:32:29We're utilizing a team effort with a dietician nutritionist, along with behavioral health and the provider. And what we've seen is these children have now become where they're no longer diabetic or even borderline. And the families around them are like, um, hold up, we want that. Yeah. And so that integrated model that we were piloting with our children are now impacting the entire family.
▶ 1:32:56And so we're beginning to see that we need to use that dietitian and nutritionist. And with additional funding, we can do an integrated model that will impact the entire family. >> it's pretty amazing because families don't know what they don't know, and it's our job to help them. Um. >> children's can teach families. >> totally. I believe that, uh, you also stated that prevention, particularly nutrition, helps avoid more expensive interventions later.
▶ 1:33:23So I guess my question, it's it's a two pronged question. From your experience, does expanding access to nutrition services at health centers reduce downstream costs like hospitalizations and emergency care? And do you view community health centers as one of the most effective platforms to scale nutrition based interventions nationally, especially in rural and underserved communities?
▶ 1:33:46I'm in rural east tennessee and right next to morgan's district, uh, or the chairs district in southwest virginia. And so we have two, two very rural areas, sir. >> so. We know that about 25% of all community health centers provide some type of nutrition focused services.
▶ 1:34:09Um, if we were to increase that with, with funding, we could see significantly more community health centers providing this service. And what we will see is you just spoke about is chronic diseases will begin to slowly come down, not only er visits, but a person being diabetic, no longer being diabetic with all of the services and all of the requirements that it takes for diabetic patient will start to
▶ 1:34:40Decrease. So we appreciate the funding opportunities for this because we know we see it every day at at the lowest levels of our patients becoming better and healthier. >> uh, well, we know the importance of training to, and we need to train those, um, staff members in the draft discussion. It allows for chc to affiliate with medical schools. Correct. Um, for these purposes. And we need to train our physicians and all healthcare in nutrition.
▶ 1:35:09Very little do they receive. >> it's um, I would not say a shame, but it is somewhat, uh, interesting how doctors are not trained for more hours. >> I would say a shame we should be, but we're going to fix that too. So with that I yield back. >> gentleman yields back. Now recognize the gentlelady from michigan, miss dingell for her five minutes of questioning. >> thank you, Mr. chair.
▶ 1:35:32And thank you to the ranking member, to both of you for holding this hearing on critical public health issues. It's essential that we prioritize robust investment and proactive efforts that empower americans to make healthy choices, understand symptoms that may require them to seek medical medical attention earlier, not put it off, and have access to early detection of chronic conditions.
▶ 1:36:01I want to say to each of the witnesses, you represent such important work, and I actually have worked in every single area, uh, both nationally and in my district. But I've only got time to really talk about one. So I'm going to talk about the legislation I have that's on today's agenda. But thank each of you for the work that you're doing. And don't stop speaking up and speaking out. We've got a job to do in funding public health.
▶ 1:36:30Uh, but let's talk about the early act, which reauthorizes and continues funding for the breast cancer education and awareness requires learning young act, a bill supporting three centers for disease control and prevention programs that empower young and high risk women to better understand breast cancer. In the united states, the most common cancer diagnosed among women is breast cancer, as our witness said.
▶ 1:36:57And in this country, the average risk for a woman developing it sometime in her life is 1 in 8. And with incidences rising in younger women each year, the earlier it is caught, the better the chance to survive and overcome this devastating health challenge. For breast cancer as it is for so many diseases, early detection and treatment starts with education and awareness. Now I've got to make a little editorial comment that.
▶ 1:37:28Yet, despite repeated refrains that we keep. Want to make america healthy again, uh, the hhs and our secretary have continued to dismantle the programs we have in place to bolster the health of americans, and they're making it harder to access coverage for preventative tools like diagnostic tests and primary care.
▶ 1:37:49I guess that nobody has told this administration that investing in prevention is not only the right thing to do, it can help save lives, but it also saves dollars. So, um, I'll stop and not say what I really want to say and move to you. Doctor brim, uh, I want to turn to you with someone who deeply understands the importance of investing in early detection methods and treatment options.
▶ 1:38:17How do programs like those supported by the early act help achieve better health outcomes and ultimately result in long term savings for both individual patients and the country at large? >> thank you very much for that question. Um, the early act really focuses on populations that don't have access to routine screening young women.
▶ 1:38:44And of course, we know in underserved communities that breast cancer is not an equal opportunity disease, not only access but access to excellent care. And we know that there is a big difference difference in outcomes, whether there is just care or excellent care. But it is so often in my practice that a young woman comes to me, um, has been going to their physician and saying, I feel something and they're assured that they're too young to have breast cancer. That's not the case anymore.
▶ 1:39:10Um, and we know that the earlier the cancer is diagnosed, not only is the outcome better, but the cost is lower. And that the journey, the intensity of care that the patient has to go through to get to survival is much less particularly so in the populations that are targeted by the early act, the young population and the underserved community and education. Knowledge is power. You don't.
▶ 1:39:39If someone keeps telling you that you're too young to have breast cancer, then you believe that because it's an authority that should know. But it is not so. And the prevalence of breast cancer in younger populations is markedly increasing, and that is not even widely known in the primary care community or in the health care community.
▶ 1:40:00So it's something that we have to target the end user, the young women and the women in underserved community, because if they do advocate for themselves, if they do seek a second opinion, if the first one is not sufficient because they have this education, then we will truly be able to save lives and many dollars. We are so lucky that we have targeted therapy immunotherapy.
▶ 1:40:24We now have increasing biomarkers, and I'm so excited about the future with artificial intelligence, where we won't have age related screening. But but risk and biomarker related screening, where we'll be able to more effectively use resources to diagnose early curable breast cancer. But we don't have any screening for these young women and underserved and so are often not don't have access. So we have to look to the early act in education. >> thank you.
▶ 1:40:53There's a lot more to be said and a lot more questions, but time's out. So I yield back. You're going to hear from me, all of you. >> the gentleman yields back in a big way. And I recognize the gentleman from georgia, the only other pharmacist in congress, the oldest pharmacist. Carter. Yeah. The oldest. >> yeah. >> well, thank you all very much for being here. It this is extremely important. As a pharmacist, I've served on a number of.
▶ 1:41:20I served in georgia state legislature and have served in congress now for 12 years. And one of the most difficult, uh, one of the most difficult things that I've had to endure is trying to explain to my colleagues who aren't necessarily health care professionals, the value of well care and the value of healthy. That's why I'm so excited. And I want to commend the administration and secretary kennedy for their efforts and their leadership. And in confronting the the root causes of chronic disease. I think it's very important.
▶ 1:41:50And as a member of the maha caucus, the make america healthy again caucus, that's one thing that we try to push is, is making sure people understand the value of well care and making sure that they understand how we can prevent chronic diseases and where they are coming from.
▶ 1:42:09And they're really that their agenda is really helping to shift that focus and to shift the focus to making sure they understand the benefit of nutrition, the benefit of exercise, all of those things that that we all know will, will lead to better lives. And of course, there are situations where it can't be helped. But at the same time, you know, a lot of these situations that can be helped. I want to ask you, um, as a pharmacist, I know firsthand and I've seen it.
▶ 1:42:38I was also a nursing home consultant and worked in nursing homes and as a consultant. And I saw the, um, the patient needs and especially when it came to alzheimer's and dementia. And that's something that, um, that I've really taken a keen interest in, but we, we continue to, to struggle with that. We continue to struggle with finding a significant and growing shortage of health care providers, especially in primary care.
▶ 1:43:03I, you know, as I say, I'm from georgia and it's true what they say about georgia. There are two georgia's, there's atlanta and everywhere else. And I represent everywhere else. And south georgia is very rural and we do struggle with healthcare providers. But I'm I'm proud. And last last year I sponsored the adapt act, which is being discussed here today, and I'm glad to support it again. Mr.
▶ 1:43:27Allman, let me ask you, how important is it to expand access to to ongoing specialty informed training for front line providers? And what role can digital health tools like case based peer to peer learning and telemedicine? Tele mentoring models play in meeting that growing demand for dementia care? >> um. Thank you. Uh, representative carter, you know, thanks to congress support, health centers were first movers on adopting telehealth services.
▶ 1:43:57And some of the items that you spoke about, such as project echo, which can help bring specialist consultants right in our exam rooms, this type of specialty training for our challenging conditions like dementia to more of our rural and more remote areas and communities.
▶ 1:44:15So we appreciate your bill, uh, that this strengthens us to be able to provide more of this type of service for patients who may have dementia, straight to our providers, because as we know, we have the ability to address integrated behavioral health. We have the ability to do a lot of the different things. But when you're talking about <u>%</u> provider being able to reach with one of the consultants through the echo program has been tremendous.
▶ 1:44:44This type of funding would allow us to expand that and have more providers to be able to have that consult, direct consultation. >> let me ask you here. Um, also that we know that early intervention is extremely important. And we know that schools play a big part in that, particularly in underserved areas that, um, that if we can catch them in their schools and underserved communities that, um, that we can, we can educate them and they can live healthier lifestyles and better lifestyles.
▶ 1:45:13So when we look at the school based health centers reauthorization act, what, how would that help in expanding centers and not only improve early intervention, but also reduce long term health costs? >> um, I, you know, I'm going to just answer that question, if you don't mind. By an example, we started our community health center school based program about two years ago at a elementary and middle school in one of our communities.
▶ 1:45:37And the superintendent said the other day in a presentation to our chamber of commerce, that that school was the only school in the healthiest school, that when all the children returned to school, it was the only school that no child could not come back to school due to a health condition and or required vaccines. That was tremendous.
▶ 1:46:03If we continue the reauthorization and funding of that, we can expand that to many more schools where many more children have that type of care. >> well, thank you for that answer. And I'm out of time, but I want to get this in because it's extremely important. This is one of the most difficult things that I've found to try to convince my colleagues of, is the, the benefit of investing in programs like this. If we can invest in programs like this, we can save so much money in the future.
▶ 1:46:29Now, in all fairness to them, we're just trying to put out fires and with budgets. But if we would invest more in well care, invest more in in educating the value of, of taking care of ourselves, we could save so much money in the future. Absolutely. I'll, um, I'll end with that and yield back. Thank you, madam chair. >> gentleman yields back. Now recognize the gentlelady from illinois, miss kitt. Miss kelly. >> thank you, chair griffith and ranking member degette for convening this hearing.
▶ 1:46:57I'm glad we are having a hearing on a healthier america, because there's been so much done this congress and undermining years of bipartisan work that produce life saving care. This administration has made false promises to the people and instead is busy driving up the health care costs on americans while doing nothing to improve quality or outcomes. In a smokescreen of waste, fraud and abuse. We have forgotten the real meaning of public health, science and evidence based solutions.
▶ 1:47:26I don't know how president trump can say that he is making america healthy again. When 1 in 7 adults say they have cut pills in half or skipped doses of medicine because of the cost, I am fighting to strengthen the health care system, not dismantle it. One way that I do it is with the digital health caucus. I am proud to co to have co-founded and co-chair with my colleague congressman troy balderson.
▶ 1:47:50The work our offices do together is addressing misinformation in the health tech world and avoid leaving anyone digitally invisible. This means holding health tech companies accountable and ensuring that they serve the best interests of americans. Mr. quasi fda updated the general wellness guidance clarification that made wearable features fall outside formal regulations.
▶ 1:48:14What role do consensus based standards like those developed by consumer technology association, play in establishing baseline expectations for performance, validation and trust in these products? >> thank you, congresswoman, for the question.
▶ 1:48:29Um, in terms of looking at standards, we're looking at, um, the ability for industry and other stakeholders to come together to build consensus based guidelines to guide the industry, particularly in the absence of federal regulation and legislation.
▶ 1:48:46So as I said earlier, um, standards are more likely to be, um, developed at the speed of innovation, unlike regulation and legislation, they can also serve as bridges to future regulation, particularly when agencies are slower in coming up with regulations or guidances.
▶ 1:49:02I think the other thing they do in the absence of federal action, uh, stakeholders, whether they're consumers, developers, deployers have rules of the road, they know what good looks like, and they can develop their products, deploy their products. Consumers can use their products based on that. >> thank you so much. There has been an undeniable attack on all health agencies by this administration and their ability to protect public health, while undermining the development of safe food, drugs and medical devices.
▶ 1:49:32Budget cuts and staffing reductions will lead to significant setbacks and access and innovation. Doctor bream, as you discuss in your testimony, we know there are significant racial disparities that exist in the diagnosis of breast cancer. How do cuts in medical research and medicaid exacerbate these disparities for black women and brown women? And I will just add, I do a lot of work around maternal mortality and morbidity. And this is black maternal health week.
▶ 1:50:00So this is and I'm the chair of the congressional black caucus health brain trust. >> representative kelly, thank you so much for your efforts, your work and your your mission alignment with the foundation. Um, we know that breast cancer is not an equal opportunity disease, that black women die 40% more frequently.
▶ 1:50:19We also know there are other populations that have much higher incidences of genetic mutations, like ashkenazi jewish women that are associated with a ten fold increase risk and 80% lifetime risk of developing breast cancer. Um, we know that screening saves lives and the screening of populations that are higher risk. The american college of radiology now counts all black women as increased risk for breast cancer.
▶ 1:50:45Um, cuts will impact the ability to not only have mammographic screening, but of course to have second tier screening for people at risk like ultrasound, mri, and contrast enhanced mammography. And we know that with these expensive limited resources, we can find cancers that mammography can't find. We know that in certain populations, women with dense breasts, mammography is still important but can be more limited.
▶ 1:51:13Um, and so we need these resource intense, uh, screening modalities to find these early curable breast cancer. And the bright light is that we'll be able to use artificial intelligence instead of age based to really identify short term risk and who needs screening now and not just offer it or recommend it for everybody at a certain age.
▶ 1:51:34So I think using artificial intelligence and imaging biomarkers will be able to more effectively and efficiently use very important resources to find early curable breast cancer. >> thank you so much. And thank you to all the witnesses. I understand we have the secretary coming next week, so we will ask him, uh, some of the questions and get some of the answers that, uh, and the issues that you guys have raised to make sure we get the right thing done. Thank you. >> gentlelady yields back.
▶ 1:52:02Now recognize the gentleman from florida, Mr. dunn. Doctor dunn for his five minutes of questioning. >> thank you very much, Mr. chairman. You know, thanks to the genius of american enterprise and innovation, there are many tools, more tools than ever to keep our nation healthy. However, also growing are the threats and issues that jeopardize america's well-being. And we have to learn from the dark days of sars cov two pandemic.
▶ 1:52:29We lost more than 1.2 million americans, uh, in that pandemic and still counting, with countless more impacted by economic hardship and long haul covid. Uh, with these health threats constantly moving, the time to start preparing is now.
▶ 1:52:46And that's why my colleague, congresswoman trahan, uh, and I are partnering to reauthorize papa p h p a h p the pandemic and all-hazards preparedness act. Uh, this legislation is critical to building durable national health security framework. And many of its authorities have actually lapsed.
▶ 1:53:09Uh, papa provides funding for programs that enhance public health response, medical countermeasures in our strategic stockpile, and deals with emerging bio threats. A recent nationwide poll found that only 9% of americans think that america's is prepared to handle a biological threat. Uh, pop expired in 23. And since then, the funding for the program has been haphazardly strung together through annual crs.
▶ 1:53:38Do not allow long term planning or complete reauthorization. Uh, I look forward to working with my colleagues on both sides of the aisle, um, to ensure our public health is fortified against these hazards. Also. Well, uh, reports are showing that americans emotional well-being is declining. Strengthening, uh, access to mental health is critical.
▶ 1:54:02I'm glad to introduce for that reason, the talk safe act, which increases mental health care availability for millions of americans. 60% of the counties in the united states have no psychiatrist. 80% of psychotropic medicines are prescribed by non-psychiatrists. America's mental health infrastructure probably warrants an overhaul, and the talk safe act is a step in that direction. Mr.
▶ 1:54:28Ulmer, you mentioned in your testimony the heart wrenching statistic that more than 40 million americans have dealt with a mental illness in the last year alone, and even more dealing with substance abuse disorders. How critical is it that americans dealing with mental health disorders are treated by qualified medical health professionals?
▶ 1:54:53And do we, uh, risk exacerbating our drug crisis if prescriptions are not written by qualified professionals? >> well. Thank you. Uh, congressman dunn, um, I remember not too long ago sitting and talking with you and sharing different war stories. So thank you for your service. Um, you know, better mental health and substance use disorder care access is in the need of is the need of the hour.
▶ 1:55:20And health centers are poised to deliver this care in every community across america. Thanks to your support, the value of integrating. And that's the key thing is integrating behavioral health services into primary care through health centers, is that our interdisciplinary team's approach can provide this care at the highest quality. So when I think about community health centers across this country, we look at this as a team effort.
▶ 1:55:47It is the provider, the behavioral health counselor, whether that's an lcsw licensed clinical. >> qualifications do seem to matter to you as well, right? >> that is correct. That is correct. >> I'm going to, uh, reclaim my time. Doctor bram, your fellow alumnus. I went to gw med school.
▶ 1:56:06You talked earlier about, uh, ways in which, uh, important innovative technologies like genetic testing can help physicians detect cancers earlier, get patients on the right track as quickly as possible. I recently introduced the facilitating access to innovation in care cancer care act, along with congressman soto, uh, to ensure that the effective cancer treatments are appropriately reimbursed in medicare part b.
▶ 1:56:34How quickly, uh, has the cancer innovation landscape evolved? And how important is it that we continue to cultivate a reimbursement environment where innovation remains economically feasible? >> it's very important because many wonderful technology has not been fully integrated or integrated at all into clinical care as a result of the lack of reimbursement.
▶ 1:56:57For advanced care, precision medicine, which is what we're targeting now, um, is an expensive proposition, but is a life saving proposition. So we have to be careful to make sure that, um, wonderful science, the innovation of our country is not just a science experiment, but is brought to patients as well. And that requires support of these, uh, novel and life saving technologies through. >> I agree with you in my time has expired.
▶ 1:57:26So I'm going to dispense with the rest of the questions. But, uh, thank you, Mr. chairman, I yield back. >> thank you. Appreciate it. Gentleman yields back. Now recognize the gentleman from ohio, Mr. lanzmann, for his five minutes of questioning. >> uh, thank you, Mr. chair. And thank you, uh, for this hearing. And to the ranking member, uh, this the staff's and all of you for for being here, uh, these are really important bills and, and your testimony has been incredibly helpful.
▶ 1:57:52Uh, these, I believe will be bipartisan, uh, you know, in terms of the outcome here that people will support this and, and rightfully so. I mean, the, the work to improve breast cancer research, hugely important. The, you know, school based health centers, public health work in general, the als research is so important. And so I'm glad we're doing this. I'm optimistic that they will pass.
▶ 1:58:21And, uh, you know, the, the answers to the questions that folks have, you guys have been great. And I don't, I don't have any questions. I just want to thank you for your leadership on this. And, uh, I'm, I'm optimistic. And so hopefully you leave optimistic too, that we'll get these bills done. And I do want to recognize the chair's leadership on this and the ranking members. The challenge I have is that we you know, we're going to pass these as we should.
▶ 1:58:50These are really important bills. Uh, but it's going to limit, you know, there's going to be limited impact until we reverse these cuts that we've seen in the last year or so. Uh, the most significant is the trillion dollar cut to medicaid and what that's going to do to folks, uh, our hospitals and our providers that has to get reversed.
▶ 1:59:13Um, the nih grants, uh, that rfk and this department of hhs has canceled. I mean, you're just talking about an enormous amount of money that is no longer being used to, uh, fight these life saving, you know, fight these diseases and just the medical research that's not happening and how that has really going to how that's set us back the aca piece, uh, and
▶ 1:59:44Whether it's bringing back the aca subsidies, uh, which tens of millions of people needed to pay for health care or just having new subsidies so that people can buy health care is going to be terribly important for all of all of the things that we're working on here today. And then we just got to stop making people sick. I mean, there's three bills on the floor this week, uh, that, uh, will make it easier for people to put, you know, pollutants in the air and that just makes people sick.
▶ 2:00:12And then at the same time, uh, they're taking away people's health care. So, uh, I think this is a good sign. This, this, this hearing that there's an enormous amount of bipartisan work to be done to make people healthier. And these are incredibly important bills.
▶ 2:00:31Uh, I just think we've got to also deal with the larger cuts and, uh, and stop making people sick and, you know, finding ways to, you know, cut the red tape and help folks, you know, expand economically without, you know, polluting the air. So, uh, that, that was it for me. And I just want to thank you all again for your testimony, your bravery, uh, and, um, the work that you all are doing.
▶ 2:01:01It's, it's so critically important. So thank you for today, I yield back. >> gentleman yields back. Now recognize the gentleman from pennsylvania, doctor joyce for his five minutes of questioning. Thank you, Mr. chairman. Thank you for holding this important hearing. Over the last 20 years. The prevalence of chronic disease has exploded in the united states, with nearly 1 in 3 young people suffering from one of these chronic diseases.
▶ 2:01:26Not only are our youth suffering from this epidemic, but it is also increased stress on our health care system, costing american public billions of dollars each year. As a nation, we spend more money on health than any other country on the face of this earth. Yet our nation continues to become sicker each and every year. It is clear that simply throwing more money at the problem will not produce results.
▶ 2:01:53We must bring about a fundamental change to how our society looks at health and the make america healthy again movement promises to bring about these changes. This involves those of us in the physician community looking inward at how we practice and how we can improve, how we can train and treat patients, diabetes, hypertension and obesity are among these conditions that are primary drivers of long term health care spend and can, in many
▶ 2:02:25Cases, be greatly improved by proper diet. This is why I am encouraged by the recent announcement from secretary kennedy and hhs that 53 medical schools are now committing to at least 40 hours of nutrition education as a part of their curriculum. This is a critical milestone in my four years of medical school.
▶ 2:02:48In my six years of postgraduate medical education, I had zero hours in nutrition, education and training. Secretary kennedy recognizes this and is making those necessary changes. Mr. ulmer, given this momentum, what more should congress do to ensure that this becomes a universal standard? Across all 150 medical schools?
▶ 2:03:13>> thank you, representative joyce, I'd like to first and foremost say that I significantly believe everything that you're saying. And and I thank you for that because nutrition in getting after what we're seeing starts at the foundation. And that is that training. We're starting our new primary medicine family medicine residency program. And in that family medicine residency program, we will have that training.
▶ 2:03:42We're looking at how we would use this funding for nutrition services, getting at the core of addressing our chronic diseases. The wellness warrior program that I spoke about with our children, addressing these nutrition services, education and counseling from an integrated model like our behavioral health model, will allow us to look at the foundational addressing chronic diseases before they start. We know how complex they can be and we know how costly they can be. So thank you for that.
▶ 2:04:13>> recognizing what you just stated, utilizing nutrition training in your family practice program, do you feel that because so many primary care opportunities are advanced by nurse practitioners and physician assistants, that nutrition, education and training should be part of their education as well? >> absolutely. It should definitely be part of their training.
▶ 2:04:34>> we know that starting in medical school is important, but we also must focus on physicians caring for americans right now, which is why I'm pleased to see that we are considering representative harshbarger's legislation to better integrate evidence based nutrition education into the primary care delivery system and the workforce training community health centers, which you are doing each and every day. Mr.
▶ 2:04:58Ulmer given that the vast majority of our current physician workforce graduated under the old model with very little nutrition training, if at all, how is the current system encouraging existing medical professionals, professionals to obtain this education?
▶ 2:05:15And would you support federal incentives such as specific reimbursement codes, to make nutrition counseling, better reimbursement, better reimbursed to support it as a viable part of a daily medical practice? >> thank you again. You know, when I hear these, I get extremely excited because oftentimes it's reimbursements.
▶ 2:05:38And when we can use a dietitian to do education and work with our teams, and the reimbursement rates do provide the funding, excuse me, for what we're providing our patients. It makes a tremendous difference. Also, looking at how we do our education programs with potential ceus and allowing nutritional education programs with us to be part of that, as doctors do as nurse practitioners and pas do receive this training.
▶ 2:06:04We believe that we can close the gap on what you just spoke about. >> I think closing that gap, your point is incredibly well taken, and we in congress are listening to how we can advance this, how we can work with that team approach that you discussed in medical education, in residency training, to make sure that nutrition is an integral part of healthcare. Thank you, Mr. chairman, and I yield back. >> gentleman yields back. Now recognize the gentleman from texas, Mr. veasey, for his five minutes of questioning.
▶ 2:06:35>> thank you, Mr. chairman. Um I want to discuss representative balderson's digital health screeners act of 2026. Uh, I think that we all know about a lot of the innovation that's out there now when it comes to wearable technology and how it's really transformed our health. Uh, what began decades ago with simple pedometers has evolved into very sophisticated devices that can track our, our sleep quality, our heart rhythms, oxygen levels, and even estimate stress in real time.
▶ 2:07:04And these devices have become smaller, they become more affordable and more visually appealing. And so they've moved from sort of niche products to really everyday tools that a lot of americans use to help better their health. And today, 1 in 3 americans use a wearable health device. And helping americans take charge of their own health is a very important and worthwhile goal. These tools have the potential to empower individuals, improve wellness.
▶ 2:07:31Uh, and identify warning signs and identify very serious conditions with early warning signs. Uh, but the potential does come with serious risk. Uh, I think that a lot of us know that these devices rely on the continuous, uh, collection of highly sensitive biometric and health related data, uh, often without users really fully understanding everything that they're sharing and how it's stored.
▶ 2:07:56And while the digital health screeners act creates a much needed fda regulation pathway for wearable devices, it does nothing to address the privacy of the data they collect. Much of this information exists in gray areas because many of the companies collecting it are not covered entities, and as a result, most wearable data is not considered protected health information and falls outside of the scope of hipaa.
▶ 2:08:19That means that deeply personal health data can be sold or shared with third parties like advertisers and and insurers. And americans, you know, may not know that, uh, this raises very serious concerns about how health information could be weaponized against unsuspecting americans. And my home state of texas, a woman can be sued or criminally prosecuted if she is suspected of seeking an abortion, even in the case of a miscarriage.
▶ 2:08:48Uh, so think about a woman in texas who wears a wearable device to track her cycle for routine reasons like family planning or monitoring health, a health condition like pcos. And at some point, her data may show a missed or irregular period, and that could be due to a number of reasons, including stress. Uh, it could be a medical condition or some other variation.
▶ 2:09:10Uh, but regardless of the reason, if she is suspected of seeking an out of state abortion, her personal health data could be subpoenaed and used to build a case against her. Uh, and that is why I'm afraid this bill does not go far enough to ensure that as more and more health data is collected, the privacy of americans is fully protected. And so I wanted to ask, uh, and Mr. quasi, am I pronouncing that right?
▶ 2:09:36Quasi mister, mister, quasi of the of the consumer technology association. Um, y'all have developed best practices and performance standards for women's health technology. Uh, and as americans are increasingly encouraged to wear these devices to monitor their health, can you briefly describe what steps congress should take to protect their data? >> yeah. And, um, thank you for that, congressman.
▶ 2:10:03And I agree with you about the privacy paradox we have here. And I testified at another congressional hearing last summer on this very issue, um, cta has been consistent. We need to update our federal privacy approach. Um, um, like many other, uh, unlike many other industrialized countries, the united states does not have comprehensive federal privacy laws.
▶ 2:10:27And we need one because there are a lot of organizations that exist today that are dealing with sensitive data, who fall outside some of the prescribed existing laws. Um, wearable manufacturers, for the most part, fall outside of hipaa, as you said, and they're sort of at the mercy of a bunch of conflicting, conflicting and sometimes inconsistent state laws, multiple standards, perhaps some ftc jurisdiction.
▶ 2:10:53I think the answer to this is comprehensive federal privacy legislation that is preemptive of state laws. So everybody has one standard to follow, easy for consumers to understand, and also does not include a private right of action. The last thing the healthcare system needs is an incentive for frivolous lawsuits. We would welcome, uh, ftc or another agency to be the primary federal enforcer with some secondary enforcement from states through state attorneys general.
▶ 2:11:22But we do need to rethink our privacy approach. >> yeah, yeah. No, thank you very much. And I really do hope that, um, that in america, we wake up to this because people's personal information is very valuable. And I think that if more people knew that it could be really disruptive and make people think twice before they buy these products, and obviously they're a big part of our economy. Mr. chairman, I yield back. >> gentleman yields back. Now recognize the gentleman from ohio, Mr. balderson for his five minutes of questioning. >> thank you, Mr. chairman.
▶ 2:11:51Thank you all for being here today. Um, Mr. quarshie, I appreciate you being here again. I'll start with you, sir. Uh, I appreciate your testimony highlighting the growing role of wearable technologies in early detection and prevention. I wear a garmin fenix eight, um, training for triathlons. Uh, back in the late 80s, I had a monstrosity on my wrist. So for those that can relate to those days, um, this is all new and exciting things that are happening.
▶ 2:12:20Uh, I'm encouraged that this subcommittee has noticed the discussion draft I'm leading to codify the fda's updated general wellness guidelines guidance. Excuse me. This is a critical first step toward providing the agency with clear direction on how wearable technologies can be used appropriately as screening tools, while maintaining strong safety guardrails. Takahashi can you discuss more broadly the health benefits wearables can provide to our constituents and follow up with that?
▶ 2:12:47And how can they play a role in empowering patients to better track and manage their own health outcomes? >> thank you for that, congressman. Chair griffith actually had a great use case for wearables earlier. He was wearing a device. He provided some data about his own body. He was able to act on that data and went to his clinician to get more information and more services. That is a perfect use case. >> and he shared that story with me too. >> he did.
▶ 2:13:14Um, and back to something I mentioned earlier, I do think wearables are now the front lines of healthcare. Um, if you, if you think about what the health services administration has estimated that 105 million americans or 30% of the us population lives in a primary care shortage area, uh, access is a big issue.
▶ 2:13:36Many of us have had the opportunity to call our clinician, and only to be told that the nearest appointment is four six months out. Wearables are especially the new gen wearables, with the new technology that can measure things such as sleep and stress and respiration and heart health are an important component in keeping people healthy. Providing information that a generation ago would be unfathomable unless you actually walked into a healthcare facility.
▶ 2:14:04So to us, the cta, we think wearables have now become the front line of health care. >> great. Thank you. Uh, follow up, sir. Um, as congress continues working to modernize regulatory pathways for digital health, what additional steps should we consider to help ensure the fda can effectively, uh, incorporate wearable, enable screening tools into prevention and care for earlier in the patient journey.
▶ 2:14:31>> I think the, the only, the only advice or recommendation I would have is for all of us policy makers, stakeholders. We need to be nimble and flexible because this technology is advancing at such a pace. And often legislation and regulation don't keep pace. So we need to be very nimble. We need to understand where the technology is going, and we need to be creative about potentially alternative regulatory pathways to ensure the safety of these devices. >> thank you very much. Um, my next question is for Mr. ulmer. Mr.
▶ 2:15:01Ulmer, thank you for being here today. And I know that several of my colleagues have brought up part of my questioning here, ranking member degette and representative carter from georgia. But I do want to see if we can emphasize a little bit more. Nearly a quarter of a million ohioans are currently living with alzheimer's or dementia related illnesses in rural communities. Too many individuals are never diagnosed and or they are diagnosed too late.
▶ 2:15:25Primary >> eye care providers are often the first point of contact, yet many report they do not feel confident in diagnosing and managing dementia care. I'm proud to lead the bipartisan adept act, which is being discussed today and would strengthen and reauthorize the project echo program, a tele mentoring model that connects frontline providers in rural communities with specialists through virtual training networks. Mr.
▶ 2:15:48Omar, from your experience, how can training models help improve the diagnosis and care for people living with alzheimer's and other dementias? >> thank you, congressman patterson. Um, you know, community health centers, uh, see almost 4 million nationwide seniors. And when you think about dementia, our primary care providers may not necessarily be the ones who diagnose that.
▶ 2:16:15However, with programs like the echo project, we're able in our most rural areas to literally get on the phone and speak with the consultant who could diagnose our patients. So this program is crucial, and we appreciate this bill because it will strengthen access to these vital services. With the specialist right there immediately with our primary care providers in the exam rooms with those patients. So thank you. >> thank you sir.
▶ 2:16:45And I have another follow up question. But I'm going to be out of time. So I will submit that. Thank you, Mr. chairman, I yield back. >> thank you. Gentleman yields back. Now recognize the gentleman of louisiana, Mr. carter, for his five minutes of questioning. >> thank you, Mr. chairman and ranking member for holding this hearing. And thank you for the witnesses for joining us today. Um, I'm pleased to speak in support of hr 8209, the school based health center reauthorization act of 2026, which is being led by my colleagues, representative tonko and balderson.
▶ 2:17:15I would also like to speak in strong support of hr 8205, the accelerating access to critical therapies for als reauthorization act of 2026, led by representatives quigley and calvert, and share a personal story from my district. Steve gleason was a new orleans saints player who blocked a punt in the very first game back in the superdome after hurricane katrina.
▶ 2:17:42A very historic moment, a very proud moment for those of us in louisiana, a moment that. Won this important game. But more importantly, it lifted the entire city. Years later, he was diagnosed with als, a devastating disease with no cure. Instead of retreating, he stepped forward. He has become one of the nation's leading leading voices for als awareness, dignity and care, and medical research.
▶ 2:18:12He turned personal struggle into public purpose. His journey reminds us that this fight is not not abstract. It's real. It's urgent, and it demands stronger investment in research, treatment and support for families facing als. This is about honoring courage with action, with research, with real money. Fighting for a cure. I'd like to take this moment to thank Mr.
▶ 2:18:38Wallet for being with us here today, for sharing your testimony with us, for sharing your strength, for your wife, for being such a strong advocate by his side. We know this isn't easy, but this is a part of our job is to help bring awareness, research dollars, and hope for a cure. So I urge my colleagues to fully support hr 8205. Mr. ulmer pivoting to school based health care centers.
▶ 2:19:08Louisiana is home to approximately 268 school based health centers, which are critical in providing primary care and behavioral health services to students and families across the state, including in my district, especially those who may otherwise not have access to health care or may face additional challenges such as transportation, financial constraints, language barriers, and more.
▶ 2:19:31How would providing additional investments to the school based health centers program expand the availability of these services to help prevent suicide, mental health and crises, hospitalization and or overdoses, particularly with our young people. >> thank you, representative carter. Um, and I want to thank you for the school based funding from prior. The reauthorization comes at a critical time.
▶ 2:19:56When I think about the school based program that we have in our community alone. This one school that we were in prior had patients who had significant behavioral health issues that were even being admitted into our behavioral health hospitals.
▶ 2:20:14Even suicides when we provided a provider and behavioral health counselor in our school based health system that stopped those patients, those children were able to see our providers and see our behavioral health counselors right there at that school. We had decreased all barriers to access, and those patients did not miss any school time.
▶ 2:20:34I'd like to say at this time that school today is not had any children who have been admitted into behavioral health hospitals, and definitely not any suicides. So it works. We see it work and we thank you. And we tremendously need the reauthorization of that funding. >> fantastic.
▶ 2:20:55Those are the kind of testimonies that america needs to hear, that these battles that people are facing are not insurmountable when given the proper resources, we can make a difference. As you know, there's a large demand, and it was said earlier by, I think, Mr. quarshie or maybe someone else, that there's a large demand for primary care and behavioral health services and significant shortage of these providers. So only a fraction that need is currently being met, which is why I've introduced legislation to address this need.
▶ 2:21:24The the mental health workforce act and the community teams act. Now, can you talk about the importance of bolstering supplements and supply of health care providers and how investments in workforce programs would help to improve access to primary care and behavioral health services for children and families in school based centers.
▶ 2:21:49We know that the need is so out of balance, particularly in the african american and minority communities where there's greater need and a very small supply of competent providers of services. We know that in healthcare, trust is very important mental health, even more so, people feel that they are in line with someone who honors their culture. Their history knows a little bit about their background, you know, about 39 seconds.
▶ 2:22:18So no long. But could you please address that? >> yes. Well, this is an infrastructure answer. We need more lcs. We need more psychologists, we need more. And the way that I believe we get more is collaborating with community health centers, with our local schools, who provide these counselors and be able to have an integrated model with how they rotate through our community health centers as part of the teaching health center program, and how we receive our providers receiving more training for those
▶ 2:22:50Counselors. And those therapists will allow us to address where the gaps are. >> in the last two seconds that I have, I want to personally thank every one of you for your time, your talent, your commitment to what is a very serious issue in our country, one that cannot be ignored. It is not partizan, it is not political. It is strictly policy, strictly personal, and it's the right thing to do. So god bless all of you. Mr. chairman, I yield back. >> gentleman yields back.
▶ 2:23:19Now I recognize the gentlelady from iowa, doctor miller-meeks. >> thank you, Mr. chairman. And I want to thank our witnesses for testifying before the subcommittee today. As a physician and a former director of the department of public health, I approached this issue with a focus on outcomes. How do we ensure that federal programs are effectively reaching patients, improving early detection and reducing disparities in care? I'm proud to highlight my good friend and colleague, representative wasserman schultz, and my bill, the early act, which is included in today's hearing.
▶ 2:23:49The early act is a targeted, evidence based initiative that addresses a clear gap in our health care system awareness and early detection of breast cancer in young women, particularly those under age 45 who are not routinely captured by traditional screening guidelines. It's why we supported or I supported as a veteran, the mammal act and service act, which also addressed screening in younger women.
▶ 2:24:13This program works because it leverages partnerships between federal agencies, providers, and community based organizations to deliver education that is both clinically accurate and culturally appropriate. That's especially important when we consider persistent disparities in breast cancer outcomes among minority and rural populations.
▶ 2:24:34From an oversight perspective, reauthorization gives this committee the opportunity to ensure that resources are being used efficiently, that outreach is data driven, and that programs are reaching the populations most at risk. We should also be thinking about how efforts like the early act can better integrate with broader care delivery reforms, whether that's improving care coordination, supporting survivorship planning, or leveraging technology to expand access to information and services.
▶ 2:25:01Young women diagnosed with breast cancer often face more aggressive disease and unique challenges, from delayed diagnosis to complex treatment decisions that can impact fertility, employment and long term health, ensuring they have access to timely information and support is not just good medicine, it's smart health policy. The early act reflects a bipartisan commission commitment to prevention, patient education and closing gaps in care.
▶ 2:25:25Doctor brim, in your testimony, you highlight that early detection leads to over 99% survival when breast cancer is caught early, but that drops significantly at later stages. From your clinical perspective, how can the early act better translate awareness into action, specifically ensuring that younger women not only understand their risk, but are actually able to access timely diagnostic services when potential concerns arise? >> yeah.
▶ 2:25:52Thank you, congresswoman, that that is really a critical point of the early act, which is we don't have screening algorithms or recommendations, not because it doesn't work, but because we don't have data and we have to act on data driven information. But in the meantime, knowledge is available to everyone and self-awareness is really critical.
▶ 2:26:13There isn't a day that doesn't go by that a patient doesn't come in and say that they feel a palpable mass because with without screening, because either they haven't had access to care or because they're not in the age appropriate range. I'm very excited about the future when we'll be able to use imaging biomarkers to be able to more effectively allocate care. Very effective care. It's important to remember that the death rate from breast cancer has gone down by 50% over the past three decades.
▶ 2:26:43We've made enormous headway. We still have a lot to go. We still lose 45,000 american women a year to this disease. >> Mrs. quarshie, as doctor brim emphasized, early awareness is critical for younger women who are not yet eligible for routine screening. What's your opinion on how programs like the early act can better leverage emerging technologies to bring greater awareness and promote better health outcomes? >> um.
▶ 2:27:08>> I haven't I mean, this is a little bit outside my area of expertise, but I will say that we believe technology should be a growing part of prevention, should be a growing part of consumers managing their own health, being able to access information about their own health. It's early. I said earlier, before a generation ago, if you wanted even baseline metrics of your own health, you had to walk into a health care facility.
▶ 2:27:33Now you have it on your watch, you have it on your rings, you have it in other tools that are available. And I think that is very encouraging. But having said that, I think to really, um, gain the full potential of all these technologies, I think congress is going to have to address some issues. We talked about one earlier, which is privacy. We're going to have to address interoperability, how this data is incorporated into ehrs, for example, and then coverage and reimbursement. >> thank you. And my time is running out. So, Mr.
▶ 2:28:02Ulmer, I have a question for you. But if you could answer in writing to us that we're care is limited, such as in iowa and rural areas, can you talk about how the early act can lead to better overall health outcomes by greater access for women to timely follow up care when concerns arise? If you would answer that in writing. And thank you, Mr. chair, I yield back. >> gentlelady yields back. I now recognize the gentlelady of texas, miss fletcher, for her five minutes of questioning.
▶ 2:28:31>> well, thank you, chairman griffith, and thanks to you and ranking member degette for holding this hearing. Um, this is really important and I appreciate all the witnesses who have shared your testimony, your experiences with us today. Um, I couldn't agree more that the bills that we're talking about authorizing and reauthorizing today are hugely important to my constituents at home, to everyone who's gathered here. And I think these are areas of bipartisan agreement.
▶ 2:29:00Um, and we're an authorizing committee. So I look forward to authorizing and reauthorizing these important programs. But I think we also on this committee have to take our work outside of this committee room, and we have to fight for these programs and for the people who do this work and the people who benefit from this research. And that means making sure that our friends on the appropriations committee reject the president's budget and budget request.
▶ 2:29:28Um, and proposed cuts to these to this funding, um, which we have seen over the last year. And so, you know, I really do want to thank you, chairman griffith, for holding this hearing, because I do think this is some of the important work that congress can and must do and should be doing. And frankly, this congress has done too little of that over the last year. Uh, not our committee in particular, but this congress overall.
▶ 2:29:53Um, and so, you know, I just don't think we can talk about these bills without acknowledging that over the last year, more than a year now, the trump administration has cut funding for research and for other programs that protect public health across agencies and fired thousands and thousands of federal employees at these agencies.
▶ 2:30:16And frankly, this congress has really done nothing to prevent the administration from cutting staff, from cutting funding for public health programs. That's changing with our appropriations. Now, um, you know, you've heard me say before that we've really ceded a lot of the legislative authority to the president and to secretary kennedy, who is decimating our public health system as we speak. And so I am incredibly grateful that we are focusing today on the things that we can and should be doing.
▶ 2:30:48Um, and I, I really think, um, I've heard a couple people today talk about how the administration is working to make america healthy again and highlighting the ways that agencies are working to implement the president's public health agenda, uh, including the fda, cdc, nih, and hrsa. But we know that the trump administration is continuing to cut staff and funding at all of these agencies.
▶ 2:31:14Just this month, uh, the president's budget request included a funding cut to the national institutes of health of more than 10%, on top of all the cuts they made last year. And so while I'm glad that our budget didn't do that, which is our job and our prerogative, um, the administration keeps proposing that we do that.
▶ 2:31:33And we know that last year, the trump administration still succeeded in terminating almost 2300 nih research grants and eliminating almost $2.5 billion in research funding. And it's alarming to me that they're still proposing more cuts at nih. You know, I get to represent so many people that work at the texas medical center, which is the largest medical complex in the world.
▶ 2:31:58Many of you all have heard me say that we're doing cutting edge research in houston, and I'm hearing firsthand from people doing that research that their their grants are being cut, their work is being cut. It's work that can't be replicated and just picked right back up. Um, and so some of these critically important research projects are not able to be maintained because of the decisions that this administration is making.
▶ 2:32:24And that includes many of the diseases that we're discussing today, including als and breast cancer research. These things are being attacked by this administration. So these bills are critical. The early act accelerating access to critical therapies for als reauthorization act. These are essential, but I am concerned that even if these bills are passed out of this committee, the programs in them will not be funded or have the necessary staff to implement them.
▶ 2:32:51Unless we assert our authority in the appropriations process. We put the guardrails in right now to make sure that the administration cannot undo the work that our witnesses are doing, that the advocates are doing, and that this committee is doing to try to move us forward instead of backward. Now, I have a lot more to say. And, um, clearly I'm going to run out of time to say it. Um, but I do have some questions for the record that I will submit to our witnesses.
▶ 2:33:18I just want to thank you for your important work and continue to, in your advocacy and in the work that you're, you're doing for us. Um, people need to see and hear you everywhere because the work that you make possible is absolutely essential for all of our communities. And so I'm grateful to you and again, to you, chairman griffith, for holding this hearing. And with that, I will yield back. >> gentleman yields back. Now recognize the gentleman from michigan, Mr. james, for his five minutes of questioning. >> thank you, Mr. chairman.
▶ 2:33:50America is facing a chronic disease crisis and michigan is living in real time. Nearly 1 in 3 adults in michigan is obese, and in some communities, that number climbs even higher. Childhood obesity is rising as well, setting the stage for diabetes, heart disease and shorter life expectancies before these kids even reach adulthood. This is not just a health issue. It's a trajectory problem for an entire generation. Tick borne illnesses, especially like lyme disease, are rising at an alarming rate.
▶ 2:34:19Across great lakes region, cases have more than doubled in parts of the country over the past two decades, and michigan has become a growing hotspot as ticks expand into new areas and longer seasons. Today, tens of thousands of americans are reported with these diseases each year, including my own family. The real number is likely far higher due to underdiagnosis. This isn't just a statistic. This is a warning.
▶ 2:34:46Lyme disease can lead to chronic joint pain, neurological issues, and long term disability if not caught early. And yet, too many families in michigan do not get timely diagnosis or treatment either because they don't recognize the symptoms or because the cost and complexity of care delay action. That is where transparency matters. My patients deserve price tags act is about giving americans clarity and control.
▶ 2:35:09When patients can see the real cost of testing, treatment and follow up care, they're more likely to seek help early before a tick bite turns into a lifelong condition or before a cancer runs rife in people's bodies. Transparency drives early intervention, and early intervention saves both lives and dollars. But we can't stop there.
▶ 2:35:33We also need a public health strategy that recognizes emerging threats like tick borne diseases and responds with urgency, education and prevention through this committee's reauthorization of tick borne disease working groups. This will mean better awareness, better access to care, and with the information they need to protect themselves and their family. A healthier america is a stronger america.
▶ 2:35:58And if we're serious about confronting these chronic diseases, we must combine transparency, prevention, and accountability to meet the challenges that we see today, especially the ones growing right in our own backyard. Too. Doctor brim, uh, doctor, I've just said that a healthy america is a strong america is not just a slogan, a matter of national strength and even national defense at a time when we're working to rebuild readiness and support our workforce, diseases like breast
▶ 2:36:28Cancer continue to impact our families, careers, and communities across the country. From your perspective, how can expanded awareness efforts, including initiatives like a national breast cancer awareness day, combined with proactive measures like regular physical activity, improve early detection, reduce long term mortality, and ultimately strengthen health and resilience of american people. >> thank you very much for that question.
▶ 2:36:51Um, we know that we can decrease the risk of breast cancer with lifestyle changes, with, with healthy diets, with exercise. I think you bring up a great point about really educating at the workplace as well. The brown foundation is working together now, uh, to, to develop a strategic initiative to educate about breast cancer. Now, I do agree that we need breast cancer awareness day, but we need education beyond that. Just having the day or the pink ribbon isn't enough.
▶ 2:37:19We need women to know what their risk factors are, what signs of breast cancer, um, how to get access care, not an easy thing. And particularly for women that are often taught to be good girls and not to advocate for themselves and to, um, to accept, uh, authority.
▶ 2:37:35So I think it's really important that we do partner in more unconventional ways with the workforce, with employers to educate women about advocating for themselves and risk factors, as well as signs of early curable breast cancer. >> question for you. Because unfortunately, cancers are occurring in people who are younger and younger. Yes. Would you advocate for this education to be included or encouraged in, say, high school health classes, or is that too early?
▶ 2:38:06>> uh, I don't know what the data would show about high school. Certainly where the concept of self-awareness, health, um, and prevention with lifestyle changes in the high school ages is really critical. Um, we don't develop breast cancer at that age group, but it is important to begin education. And there are initiatives.
▶ 2:38:26In fact, the brown foundation has young, um, programs, something that we call check out my rack to really target very young women about health prevention for breast cancer and how to access care. If you might have a sign or symptom of breast cancer. >> perfect. Thank you very much. Uh, in the last few seconds, I have I'll submit my remaining questions for the record. Um, but I really want to commend and thank, uh, Mr.
▶ 2:38:49Wallach and miss, uh, um, for your courage, for your resilience and for your continued advocacy, not just for your husband, but for a generation of people who are surviving, uh, with this, uh, this scourge. Als, uh, you have our commitment. We'll continue to work with you. Thank you for being here today, Mr. chairman, I yield back. >> gentleman yields back. Now recognize the gentleman from florida, Mr. bilirakis, for his five minutes. Thank you. >> Mr. chairman. I appreciate it very much.
▶ 2:39:16Uh, good morning again, and thank you so very much for holding this hearing. I'm proud to support many of the bills today, including h.r. 5160. The stem cell therapeutic and research reauthorization act, which I lead with my good friends, uh, representative chris smith and doris matsui. Uh, this bill reauthorizes the bill young cell transplantation program named after the great congressman bill young. Chairman young, a floridian.
▶ 2:39:46And again, he was a former chairman of the appropriations committee and a great friend of the bill o'reilly's family. This program was created from the story of a young leukemia patient who needed a bone marrow transplant, but had no matching donors. In her family. 75% of patients don't have a full, uh, fully matched donor in their family, unfortunately, and turn to the national registry for help.
▶ 2:40:15Uh, thanks to the support of congressman young and his great staff. Uh, I'm not going to embarrass him, but, uh, but they, they did an outstanding job. And, uh, I'm going to mention harry because he's just such a wonderful person. And, uh, he's taken this as his initiative. Uh, and we appreciate you so much, harry.
▶ 2:40:36Uh, so the experts in the field, like doctor, uh, joanne kurtzberg, uh, this program now coordinates bone marrow, blood stem cell and cord blood transplants nationwide. Thank goodness these programs are proven and life saving. Nearly 150,000 transplants have been facilitated as a result of the bill young program.
▶ 2:41:02And since the bill's last reauthorization, the number of transplants facilitated through the program per year has increased by almost 40%. Timely reauthorization is critical to continue to advance science and innovation, with breakthroughs that promise a donor for every patient. Wouldn't that be outstanding? I know we'll get there.
▶ 2:41:28So the first question is, miss rosenberg, can you share how bone marrow and cord blood programs have evolved and improved with scientific innovation? >> yes. Thank you, congressman, for your support and your question and for keeping congressman young's legacy alive. I appreciate it. Since our inception and particularly in the last five years, research has been an absolute catalyst for moving this program forward.
▶ 2:41:57I'll start with a couple of examples. First of all, there has been incredible research with our partners from the medical college of wisconsin that shows a younger donor. Those donors between the ages of 18 and 35 have better outcomes for patients. Not only does that help the patient, but it allows us to use the funding efficiently and effectively to make sure we have an optimal registry to help patients.
▶ 2:42:24Secondly, our cord blood community, they have done research and now we're able to expand a cord blood unit cells by 50 times, making one unit available for an adult transplant. And finally, with nmdp led research, we have changed the paradigm where historically 50% or less, you had the opportunity to find a match on the registry. That is no longer the case today.
▶ 2:42:49As an adult patient with common blood cancers and disorders, you have a 99% chance of finding a match on the registry. This is all taking us exactly in the direction you said, a place. >> where success story. >> it is, and it's been an incredible partnership, both with from a private and from a public perspective.
▶ 2:43:10Congress had the foresight early on to create a single point of access that brought together not only us donors and cord blood units, but over 50 registries around the world to ensure that us patients had the best possible match. >> incredible, incredible. Thank you very much. Thank you. I, I, I have little time here. So miss wallach and Mr. and miss abra.
▶ 2:43:38I'm sorry if I mispronounced. Thank you for being here and sharing your story. It's good to see you. Of course, as you know, my family is personally impacted by the neurodegenerative diseases. As you know, we've talked about it. Uh, and I care deeply about these issues. So next question is your testimony notes how investing in als research also means investment in alzheimer's and parkinson's, in addition to reauthorizing the act for als.
▶ 2:44:09Do you have further recommendations for how congress can promote innovation for these diseases? >> yeah. Thank you so much for the question and all of your support. I think one of the examples I shared earlier, one of the great outcomes from the first five years of act for als is that it incentivized therapeutics companies to take a treatment that is working for als and to test it on another neurodegenerative disease.
▶ 2:44:36And I think that's the real opportunity ahead of us in the next 15 years, is really appreciating the scientific link between ftd, alzheimer's, huntington's, all neurodegenerative diseases, have cellular similarities, have protein dysfunction, similarities. And yet I don't think to date we're doing enough to leverage what we're discovering for one disease to see if it would work for another.
▶ 2:45:04And so I would recommend that in addition to all that we're hoping and asking for with reauthorization of act for als, that congress can further incentivize both researchers and therapeutics companies to take treatments that they're testing for one disease in the neurodegenerative category and test it for others. >> thank you very much, I appreciate it. Absolutely. >> gentleman yields back and now recognize the gentleman from new york, Mr. tonko, for his five minutes of question.
▶ 2:45:35>> thank you, Mr. chair. I'm excited that we are holding today's hearing and considering many meaningful efforts. Let me start by saying thank you to professor holly for joining us today and sharing your family's story. Your passion and expertise is most appreciated. On behalf of new york's 20th district, we are proud to have you here today. You have always served as a resource to me and my team. I appreciate your expertise and advocacy, and thank you.
▶ 2:46:01And the center for lyme action advocates for teaching me so much on this issue and working with me to help lead the effort on the kay hagan uh, act reauthorization. So, miss, uh, ahern, what else do you want my colleagues to know about the need for the tick act? >> thank you, congressman, very much for that.
▶ 2:46:24Um, I what I would really like everybody to understand is that the tick borne diseases are not prevalent only in new york state, not only in the northeast and the upper midwest, that they're everywhere. And one, just one epidemiological statistic that I can add to that is lyme disease is the third most common bacterial infectious disease in this country. And everybody, you know, the thought is it's rare, you know, you're not going to get it if you're in ohio or other states.
▶ 2:46:53I'm not sure why I'm picking on ohio, but the reality is it's number three. Number one is chlamydia. Number two is syphilis. Lyme disease is the third most common bacterial infectious disease in this country. And it is it causes long term chronic illness that can drive neuroinflammatory diseases, such as, you know, infections by viruses and bacteria have been linked to alzheimer's disease, or perhaps could be drivers of the neuroinflammation and neurodegeneration that's
▶ 2:47:24Associated with als, for example. Um, it's clear that lyme disease is a driver of, uh, pans and pandas, the neuro psychiatric conditions that meant too many kids suffer from. So this is not a small problem. It is a problem worthy of far more funding than the tick act is able to provide. But the tick act provides enough to get better diagnostic tools, better surveillance tools.
▶ 2:47:48And I would add that that surveillance will follow better diagnostic tools because once we are able to diagnose this disease, the true magnitude of the disease in this country, I think will become far more clear. >> well, thank you for that. And also, um, I'm a long time supporter of the school based health centers, and I'm honored to lead the school based health centers reauthorization bill that's being considered today. So thank you to my colleague, representative balderson, for the bipartisan partnership on this reauthorization.
▶ 2:48:17Through the original school based health center program, funding could be used to establish new school based sites or to upgrade current facilities to serve additional children. Now, the sbcs are a critical tool in providing mental health care to adolescents in a location that is safe and indeed convenient. Today, there are more than 2500 school based health centers nationwide, serving more than 6.3 million k through 12 students.
▶ 2:48:42In the midst of our nation's overdose epidemic, these centers have become even more important, especially in communities where there is limited access to substance use and mental health care. In my district, I am especially proud of the work of health centers including whitney young health and hometown health, which operates multiple school based health centers in the capital region of new york, including those in albany. Schenectady. These centers provide easy access to high quality pediatric care. So, Mr.
▶ 2:49:09Ulmer, how does school based health centers improve children's health, help schools, and then ultimately assist families? >> um, first, thank you, congressman, and thank you for your long standing support of community health centers, uh, school based health centers, I believe, uh, from, from earlier discussions is infrastructure the way that we should go to make america healthier when we provide providers and behavioral health counselors in the school at early stages of a child's life, we are changing
▶ 2:49:41Habits. We are changing how a child is more nutritious. And that goes the entire life of that child. To address chronic conditions, we're addressing the potential for diabetes. We're addressing behavioral health issues before they become complex and costly. So the reauthorization of this bill is critical for all community health centers across the country to provide more. And with that, we will see more school based health centers spread across this entire country.
▶ 2:50:11>> well, community health centers take care of 19% of all children in the state of new york. Still, over 40. Over 50% of new york's children do not have a primary care medical home. So, Mr. omer, why would increasing investment in school based health centers help close that gap in access to pediatric care? >> well, absolutely.
▶ 2:50:31I think your question in itself answers with more funding and continued federal investments, we're able to put more providers in these critical places for our children. Uh, in florida alone, we see 50% of all children in our community. And if we had more pediatric providers, more behavioral health counselors, we could see more children in those schools as well as throughout the entire community and country. >> thank you.
▶ 2:50:58Well, my time has expired, but I do want to just put a word out in support of the adapt act, which is designed to close the gap that is out there in making certain that we have quality care for those living with dementia and alzheimer's. So with that, Mr. chair, I appreciate the time and yield back. >> gentleman yields back. I ask unanimous consent to insert in the record the documents included on the staff hearing documents list. Without objection, so ordered. I would like to thank all of our witnesses again for being here today.
▶ 2:51:27Members may have additional written questions for you. I'll remind members they have ten business days to submit questions for the record, and I ask the witnesses to respond to those questions promptly. Members should submit their questions by the close of business on wednesday, april 29th, and without objection, subcommittee is adjourned.