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Health Updates


Feb 22, 2024
Health

Chairs Rodgers and Guthrie Announce Health Subcommittee Legislative Hearing on Rare Disease Bills

Washington, D.C. — House Energy and Commerce Committee Chair Cathy McMorris Rodgers (R-WA) and Subcommittee on Health Chair Brett Guthrie (R-KY) today announced a legislative hearing titled “Legislative Proposals to Support Patients with Rare Diseases.” “Energy and Commerce Republicans have consistently and proudly defended the value and dignity of all life. Those living with rare diseases are no different and deserve every opportunity to live an abundant life. We are proud to continue building on the Committee’s previous efforts, like our recent work to ban the discriminatory practice of Quality-Adjusted Life Years, by considering legislative proposals that further support patients with rare diseases and ensure they can maintain access to live saving treatments,” said Chairs Rodgers and Guthrie. “By supporting research and fostering innovation, we can continue to support finding treatments and cures that provide hope to patients in need.”  Subcommittee on Health hearing titled “Legislative Proposals to Support Patients with Rare Diseases.”    WHAT : A legislative hearing to discuss solutions to support patients living with rare diseases.   DATE : Thursday, February 29, 2024   TIME : 10:00 AM   LOCATION : 2123 Rayburn House Office Building   WITNESSES : Witnesses will be announced and are by invitation only.  LEGISLATION TO BE DISCUSSED :  H.R. 1092 , Better Empowerment Now to Enhance Framework and Improve Treatments (BENEFIT) Act (Reps. Matsui and Wenstrup)  H.R. 3433 , Give Kids a Chance Act (Reps. McCaul and Eshoo)  H.R. 4758 , Accelerating Kids Access to Care Act (Reps. Trahan and Miller-Meeks)  H.R. 5539 , Optimizing Research Progress Hope And New (ORPHAN) Cures Act (Reps. Joyce and Nickel)  H.R. 5547 , Maintaining Investments in New Innovation (MINI) Act (Reps. Nickel and Joyce)  H.R. 5663 , ALS Better Care Act (Reps. Schakowsky, Quigley, Fitzpatrick)  H.R. 6020 , Honor Our Living Donors Act (Reps. Obernolte and DelBene)  H.R. 6094 , Providing Realistic Opportunity To Equal and Comparable Treatment for (PROTECT) Rare Act (Reps. Matsui and Dunn)  H.R. 6465 , Preserving Life-saving Access to Specialty Medicines in America (PLASMA) Act (Reps. Hudson and Davis)  H.R. 6664 , Innovation in Pediatric Drugs Act (Reps. Eshoo and McCaul)  H.R. 6705 , Effective Screening and Testing for Tuberculosis Act (Reps. Moolenaar and Dingell) H.R. 7188 , Shandra Eisenga Human Cell and Tissue Product Safety Act (Reps. Moolenaar and Dingell)  H.R. 7248 , FDA Modernization Act 3.0 (Reps. Carter and Barragan)  H.R. 7383 , Retaining Access and Restoring Exclusivity (RARE) Act (Reps. Matsui and Bilirakis)   H.R. 7384 , Creating Hope Reauthorization Act of 2024 (Reps. McCaul and Eshoo)  H.R. ____ , Antimicrobial Resistance Research Assessment Act (Rep. Griffith)  H.R. ____ , Patient Access Act (Rep. Guthrie)  H.R. ____ , Sickle Cell Disease Comprehensive Care Act (Rep. Burgess) This notice is at the direction of the Chair. The hearing will be open to the public and press and will be live streamed online at https://energycommerce.house.gov/ . If you have any questions concerning the hearing, please contact Emma Schultheis with the Committee staff at Emma.Schultheis@mail.house.gov . If you have any press-related questions, please contact Christopher Krepich at Christopher.Krepich@mail.house.gov



Feb 16, 2024
Press Release

E&C Republicans Request Former NIH Official Participate in Transcribed Interview Regarding Oversight of Risky Virus Research Experiments

Washington, D.C. — As part of its ongoing investigation into the origins of the COVID-19 pandemic and the adequacy of the National Institutes of Health’s (NIH) oversight of risky virus research, House Energy and Commerce Committee Chair Cathy McMorris Rodgers (R-WA), Subcommittee on Health Chair Brett Guthrie (R-KY), and Subcommittee on Oversight and Investigations Chair Morgan Griffith (R-VA) have requested former senior NIH official Dr. Teresa Hauguel participate in a transcribed interview before the Committee.  KEY EXCERPT :  “As a former program officer at the National Institute of Allergy and Infectious Diseases (NIAID), documents indicate that you participated in internal institute committee meetings to determine whether certain virus research experiments presented risks that required additional scrutiny and possible actions to mitigate the risks such as redesign of the experiment. You have been identified by a senior official at NIAID as a subject matter expert for reviewing risks in respiratory virus research projects. For these reasons, we believe you could be helpful to the committee’s examination of virus research oversight, and thus, we request that you appear for a transcribed interview to be held on the week of March 4, 2024.”  CLICK HERE to read the letter.



Feb 16, 2024
Press Release

E&C Republicans Raise Concerns with Proposed Rule that Weakens HHS Refugee Resettlement Vetting Process

Washington, D.C. — House Energy and Commerce Committee Chair Cathy McMorris Rodgers (R-WA), Subcommittee on Health Chair Brett Guthrie (R-KY), and Subcommittee on Oversight and Investigations Chair Morgan Griffith (R-VA), on behalf of the Health and Oversight Subcommittee Republicans, wrote to Biden administration officials who oversee the Department of Health and Human Services (HHS) Office of Refugee Resettlement. In the letter, the Chairs raise concerns about a recent Notice of Proposed Rulemaking that would weaken the vetting process for children in the program as well as ORR’s poor stewardship of taxpayer dollars and potential conflicts of interested related to the ORR Director.   In addition, the Chairs note that HHS has failed to respond to questions for the record from a hearing in July of 2023, despite several extensions given to the original deadline.  KEY EXCERPTS : “ORR’s inclusion of this provision [Sec. 410.1202 (c)] is particularly surprising considering continual bi-partisan Congressional interest in bolstering the sponsor vetting process. In fact, the Department of Health and Human Services (HHS) Secretary Xavier Becerra was repeatedly questioned on the thoroughness of the sponsor vetting process at a Subcommittee on Oversight and Investigations hearing last summer. The Secretary repeatedly assured the Subcommittee that ORR was conducting a ‘very thorough vetting process for any sponsor to make sure we understand who is asking for the opportunity to care for these children.' Making background checks and fingerprinting optional is inconsistent with the Secretary’s testimony to Congress .”  […]  “Numerous media and government oversight reports have clearly shown that the care provider facilities and sponsors do not always act in the best interest of the unaccompanied children. Many ORR influx care facility’s personnel have shown that they are frequently unqualified to care for vulnerable children. There have even been allegations of neglect and sexual misconduct by influx care facility staff with migrant children. Loosening vetting procedures for sponsors by eliminating background checks, fingerprints, and home visits, will put vulnerable unaccompanied children at a greater risk of being trafficked, exploited, or placed in unsafe settings.   “ Whistleblowers have reported to Congress how HHS endangered the lives of unaccompanied migrant children by not properly vetting sponsors and not tracking children after they left ORR custody. Many children have ended up working in unsafe environments, such as roofing and meatpacking plants, after they were placed with an ORR approved sponsor. Some unaccompanied children have even died from injuries sustained while working at these sites. The Committee has received new allegations that ORR knowingly attempted to place a child with a convicted sex offender who was previously convicted of sexually abusing another child in his custody.”  […]  “ORR’s neglect of the unaccompanied children comes at a time when the agency has received unprecedented levels of funding. The Administration for Children and Families (ACF), ORR’s parent agency, has received $20 billion in the last two years—$8.9 billion in fiscal year (FY) 2022 and $10.9 billion in FY 2023—for refugee and entrant assistance, including more than $10 billion for the care of unaccompanied migrant children . ORR’s continued failure to care adequately for unaccompanied children in its custody, shows not only indifference to child welfare, but poor stewardship of taxpayer dollars.  “ The Committee is also disturbed to learn of potential conflicts of interest stemming from Director Dunn Marcos’ prior role as Senior Director for Resettlement, Asylum, and Integration Programming at the International Rescue Committee (IRC). Recent reports indicate not only that the IRC has been the top beneficiary of refugee and entrant assistance discretionary grants since 2013, but also that the funding amounts allocated to the IRC in 2022 and 2023 have ballooned, with the organization receiving more than $235 million in spending in FY 2023 compared to $22 million in FY 2021—curiously, since Director Dunn Marcos took office.”  BACKGROUND : Section 410.1202 (c) of the Proposed Rule states, "As part of its suitability assessment, ORR may also require such components as an investigation of the living conditions in which the unaccompanied child would be placed and the standard of care the unaccompanied child would receive, [. . .] a home visit or home study […], background and criminal records checks, which may include a fingerprint based background check, on the potential sponsor and on adult residents of the potential sponsor’s household." Section 410.1210 (a)(3) does not require PRS for children with mental health needs, as the UC Program Foundational Rule now states “ORR may conduct PRS in additional cases involving unaccompanied children with mental health or other needs who could benefit from ongoing assistance from a community-based service provider,” based on available appropriations.  Unaccompanied children often undergo extreme physical and mental trauma in their perilous journey to the U.S. and are in need of regular mental health and wellness checks by appropriate providers.   Such services must be available for children manifesting obvious mental health symptoms.  Section 410.1210 (a)(4) states “ORR shall not delay the release of an unaccompanied child if PRS are not immediately available.”   By including this provision, ORR absolves itself of all responsibility that an unaccompanied migrant child will be properly taken care of after release in situations where the unaccompanied child clearly needs PRS.  Section 410.1210 (e) provides that ongoing check-ins and in-home visits will be made “in consultation with the released unaccompanied child and sponsor,” and may be done “either in person or virtually. ”  CLICK HERE to read the full letter. 



Feb 14, 2024
Hearings

Subcommittee Chair Guthrie Opening Remarks on Legislative Proposals to Support Patients and Caregivers

Washington D.C. — House Energy and Commerce Health Subcommittee Chair Brett Guthrie (R-KY) delivered the following opening remarks at today’s subcommittee hearing discussing bipartisan policy proposals that support patients and caregivers.  “The bills in front of us today are designed to promote greater and improved access to care for Americans and their families. They are also complementary to our work on lowering health care costs for all Americans, that we have worked together on in a bipartisan way.  “We’re considering legislation that will continue programs to detect, diagnose, and treat chronic diseases and health conditions at earlier stages, improve the quality of life for individuals with disabilities, help ensure Americans in rural communities have access to life-saving care, and provide additional resources to assist in the development of cutting-edge treatments for debilitating health conditions.   “Today’s hearing will help inform our policymaking as we explore how current programs are working and if any gaps that exist may need to be addressed in order to improve the quality of life for millions across the country.”  REAUTHORIZING THE BOLD ACT   “For example, my bipartisan bill, H.R. 7218, the Building Our Largest Dementia Infrastructure for Alzheimer’s Reauthorization Act or 'BOLD Act' would continue programming to ensure individuals living with Alzheimer’s have access to the highest quality of health care while building on efforts to identify and diagnose the disease sooner.  “The BOLD Reauthorization Act also includes educational resources for caregivers to help ease the challenges for those caring for loved ones with this vicious disease.  “These continued investments are even more important now that we have treatments to slow the progression of Alzheimer’s and will help to ensure patients and their families have more time to spend with one another.   “I say that as someone who just lost their mother-in-law to the disease in October.   “I would like to thank Representative Tonko for leading this legislation with me, and I look forward to working to get this important bill reauthorized this year.”  BUILDING UPON THE WORK OF THE PROTECTING HEALTH CARE FOR ALL PATIENTS ACT   “Another crucial bill we are considering today is the Charlotte Woodward Organ Transplant Discrimination Prevention Act, led by Representatives Cammack and Dingell, which will prohibit health care providers and other entities from denying or restricting an individual's access to organ transplants solely on the basis of the individual's disability.   “This builds on the work we did last week, led by Chair Rodgers, who has been a champion for individuals with disabilities, by passing the Protecting Health Care for All Patients Act out of the House of Representatives to ensure individuals with disabilities are treated fairly and are able to access the treatments they need.  “We’ll also consider the DeOndra Dixon INCLUDE Project Act, which will authorize current programs at the National Institutes of Health to continue cutting-edge research on Down Syndrome, and address gaps in current research initiatives.   “The INCUDE Project will continue to facilitate improved coordination across NIH and build upon research that will improve the quality of life for those living with Down Syndrome.   “Other bills being considered today are designed to provide access to care for individuals in rural communities as well as diagnose potentially fatal, yet treatable chronic diseases, such as heart disease and certain cancers.  “The SIREN Reauthorization Act, led by Representative David Joyce, will continue sending resources for rural emergency medical providers to ensure they can maintain their essential services.  “H.R. 7189 will reauthorize programs to help address gaps in care for individuals with congenital heart disease. Efforts like this have helped ensure over 90% of kids who are diagnosed with congenital heart disease live well into adulthood.   “Many of the bills we are considering will promote greater access to care, facilitate earlier detection, diagnosis, and interventions and help individuals live longer and healthier lives.   “Thank you to all of my colleagues who worked hard to get the legislation before us today and for their leadership on these policies.” 



Feb 14, 2024
Health

Chair Rodgers Opening Remarks on Legislative Proposals to Support Patients and Caregivers

Washington D.C. — House Energy and Commerce Committee Chair Cathy McMorris Rodgers (R-WA) delivered the following opening remarks at today’s Health Subcommittee legislative hearing to discuss bipartisan policy proposals that support patients and caregivers.  “First, just let me say thank you to all of you, to the Chair, to the Ranking Member, to my colleagues, and to the extraordinary staff—given my announcement last week. “I am blessed. “It has been a tremendous blessing to lead this Committee. “I can testify that being the Chair of the House Energy and Commerce Committee—the best committee on Capitol Hill—is the best position in the House, and it has been a privilege and an honor for me to lead.  “And I’ll just say, we’re going to finish strong. We have a whole year ahead of us and we have a lot of work to do. “I look forward to working with all of you on important issues, including the issues that are before us today. “As I’ve said many times before, this Committee has a rich history of plowing the hard ground necessary to legislate, and that means coming together to get things done and to get results. “I’m proud of our efforts so far this Congress—like the Lower Costs, More Transparency Act —which are fundamental to driving down the cost of care and fixing our broken health care system. “Today, we’re focusing 19 bipartisan bills that support patients, caregivers, and health care providers.”  IMPROVING PUBLIC HEALTH “Specifically, we will examine proposals to help improve our understanding of various diseases, disabilities, chronic conditions, and stillbirths. “We’ll look at legislation to continue support for emergency medical services and health care providers, to reauthorize respite care resources for family caregivers, and to prevent organ transplant candidates from being denied a transplant based solely on having a disability. “I look forward to hearing from our witnesses about the importance of these programs.” INCLUDE ACT “I’m particularly excited that we are moving forward with the DeOndra Dixon INCLUDE Project Act of 2024 that I’ve introduced with Representatives Diana DeGette, Tom Cole, Rosa DeLauro, and Eleanor Holmes Norton. “You all know that my mission here has been to improve the lives of individuals with disabilities. “That’s why I’m proud to champion this bill that would provide important Congressional oversight and direction for the INCLUDE Project at the National Institutes of Health. “Established by a Congressional directive in 2018, INCLUDE, also known as the Investigation of Co-occurring Conditions Across the Lifespan to Understand Down Syndrome Project, conducts research on critical health and quality-of-life needs for individuals with Down syndrome throughout their lives.   “At the time INCLUDE was established, Down Syndrome was among one of the least studied and funded genetic conditions at the NIH, despite it being one of the most common chromosome abnormalities. “I just want to underscore how important it was that Congress took action to make studying Down syndrome a priority at the NIH. “Individuals with Down syndrome are affected by many of the same diseases and conditions that are the focus of the programs we are examining today. “However, those diseases may affect those with Down syndrome differently, require different strategies to treat, or may appear more often in those with Down syndrome than in the general population, as is the case with Alzheimer’s disease. “For a neurological disease like Alzheimer’s, it may take new tools and strategies to know if a treatment is working. “Individuals with Down syndrome are living longer than ever, and the NIH needs to help push forward meaningful research that will benefit those with Down syndrome and their families in all stages of their lives. “It is important that we also acknowledge this research could benefit the millions of people who battle conditions—like Alzheimer’s, cancer, and heart conditions—that are common among, but hardly limited to people with Down syndrome. “Our bipartisan legislation directing the NIH to continue this important work will help us take Down syndrome research to new heights and usher in a new era of innovation to help everyone with Down syndrome—and their families—live their lives to their fullest potential. “We still have a lot of work ahead, including these important bipartisan bills before us today, and I am looking forward to continuing our work over the rest of this Congress to improve the lives of the American people.”



Feb 12, 2024
Press Release

E&C Leaders Ask Government Watchdog to Assess Risks of HHS and USDA Selling Excess Laboratory Equipment

Members raise dual-use concerns over lab equipment that could facilitate bioterrorism or warfare Washington, D.C. — House Energy and Commerce Committee Chair Cathy McMorris Rodgers (R-WA), Subcommittee on Health Chair Brett Guthrie (R-KY), and Subcommittee on Oversight and Investigations Chair Morgan Griffith (R-VA), on behalf of the Health and Oversight Committee Republicans, wrote to Government Accountability Office (GAO) Comptroller General Gene Dodaro. In the letter, the Chairs request GAO study the oversight by the Department of Health and Human Services (HHS) and U.S. Department of Agriculture (USDA) of sales of used and excess laboratory equipment and protective clothing that could be used to facilitate bioterrorism or warfare.  KEY EXCERPT :  “In 2023, GAO reported that a number of incidents over the past 10 years have led to questions about the nature and adequacy of U.S. government oversight of pathogens with pandemic potential. Moreover, these lapses have furthered concerns about the potential for a biological weapons attack. In recent years, increases in the accessibility of scientific findings and dual-use biological laboratory equipment—such as used fermenters, centrifuges, and other equipment—could increase the likelihood of such an attack. The availability of both biological laboratory equipment and protective clothing on the commercial market provides access to materials needed to conduct legitimate scientific research, but also increases the chances this equipment could be used for malicious purposes, such as biological terrorism or warfare. Furthermore, the existence of a resale market for this type of equipment and clothing at reduced cost means terrorists have the potential for even greater access to the supplies needed to create biological weapons.” CLICK HERE to read the full letter.



Feb 7, 2024
Press Release

Chairs Rodgers and Guthrie Announce Legislative Hearing to Support Patients and Caregivers

Washington, D.C. — House Energy and Commerce Committee Chair Cathy McMorris Rodgers (R-WA) and Subcommittee on Health Chair Brett Guthrie (R-KY) today announced a legislative hearing titled “Legislative Proposals to Support Patients and Caregivers.” “Americans are counting on Congress to deliver solutions that will improve the health and wellbeing of patients and support caregivers. In keeping with Energy and Commerce’s rich history of plowing the hard ground necessary to legislate, we will consider bipartisan policy proposals that accomplish just that. I am grateful to my colleagues for leading these important efforts,” said Chairs Rodgers and Guthrie.    Subcommittee on Health hearing titled “Legislative Proposals to Support Patients and Caregivers.”   WHAT : A legislative hearing to discuss legislation designed to support patients and caregivers.  DATE : Wednesday, February 14, 2024  TIME : 10:00 AM  LOCATION : 2123 Rayburn House Office Building  WITNESSES : Witnesses will be announced and are by invitation only.    LEGISLATION TO BE DISCUSSED :  H.R. 6160 , To amend the Public Health Service Act to reauthorize a lifespan respite care program (Reps. Molinaro and Cárdenas )  H.R. 7208 , To reauthorize the Traumatic Brain Injury program (Reps. Pascrell and Bacon)  H.R. 7251 , To amend the Public Health Service Act to reauthorize certain poison control programs (Reps. Chavez-DeRemer, J. Joyce, Davis, and Cherfilus-McCormick)   H.R. 7153 , To reauthorize the Dr. Lorna Breen Health Care Provider Protection Act, and for other purposes (Reps. Wild and Kiggans)    H.R. 6960 , Emergency Medical Services for Children Reauthorization Act of 2024 (Reps. Carter and Castor)   H.R. 4646 , SIREN Reauthorization Act (Reps. D. Joyce and Dingell)   H.R. 7213 , Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act of 2024 (Reps. C. Smith and Cueller)   H.R. 7189 , Congenital Heart Futures Reauthorization Act of 2024 (Reps. Bilirakis, Soto, Carter, Schiff, Salazar, and Cárdenas)    H.R. 7218 , Building Our Largest Dementia (BOLD) Infrastructure for Alzheimer's Act of 2024 (Reps. Guthrie, Tonko, C. Smith, and Waters)   H.R. 2706 , Charlotte Woodward Organ Transplant Discrimination Prevention Act (Reps. Cammack and Dingell)   H.R. 620 , Alzheimer’s Accountability and Investment Act (Reps. C. Smith, Tonko, and Waters)   H.R. 619 , NAPA Reauthorization Act (Reps. Tonko, C. Smith, and Waters)   H.R. 6829 , Cardiomyopathy Health Education, Awareness, Research, and Training in the Schools (HEARTS) Act of 2023 (Reps. Pallone and A. Kim)  H.R. 7224 , To amend the Public Health Service Act to reauthorize the Stop, Observe, Ask, and Respond to Health and Wellness Training Program (Reps. Cohen, Wagner, Cárdenas , and Carter)  H.R. 7300 , Reauthorization of the Family-to-Family Health Information Centers (Reps. Sherrill and De La Cruz)  H.R. 7268 , DeOndra Dixon INCLUDE Project Act of 2024 (Reps. McMorris Rodgers, DeGette, Cole, and Holmes Norton)   H.R. 5012 , SHINE for Autumn Act of 2023 (Reps. Y. Kim, Castor, D. Joyce, and Kelly)  H.R. 3916 , SCREENS for Cancer Act of 2023 (Reps. Morelle and Fitzpatrick)   H.R. 4534 , Women and Lung Cancer Research and Preventive Services Act of 2023 (Reps. Boyle and Fitzpatrick)  This notice is at the direction of the Chair. The hearing will be open to the public and press and will be live streamed online at https://energycommerce.house.gov/ . If you have any questions concerning the hearing, please contact Emma Schultheis with the Committee staff at Emma.Schultheis@mail.house.gov . If you have any press-related questions, please contact Christopher Krepich at Christopher.Krepich@mail.house.gov .



Feb 7, 2024
Press Release

House Votes to Ban Metric Used to Deny Care for People with Disabilities and Chronic Illnesses

Washington, D.C. — Today, the House passed H.R. 485, the Protecting Care for All Patients Act , to ban federal health programs from using discriminatory measures known as Quality-Adjusted Life Years (QALYs) by a vote of 211 to 208. The legislation is led by House Energy and Commerce Committee Chair Cathy McMorris Rodgers (R-WA), House Ways and Means Committee Chair Jason Smith (R-MO), Rep. Michael Burgess, M.D. (R-TX), and Rep. Brad Wenstrup, D.P.M. (R-OH). "Every human life has value. The government should not be mercilessly placing a dollar value on someone’s life and denying care just because they have a disability or chronic illness. Patients, and those who are fighting for their loved ones’ lives, have pleaded with Congress to fix a system that actively prevents them from getting the care they need. I’m proud to champion this important legislation that will give patients with disabilities and chronic or rare illness hope,” said Chair Rodgers.   “Bureaucrats in Washington and across the country are trying to put a price tag on life. The Protecting Health Care for All Patients Act, reaffirms that every life has value and stops individual Americans from being reduced to mere dollars and cents on a spreadsheet. An individual has worth, regardless of someone’s age or whether they have a disability or other chronic ailment,” said Chair Smith. “All life has value. That is why it is imperative that our health care system upholds the fundamental principles of dignity and respect for every patient under our care,” said Rep. Michael C. Burgess, M.D. “Assigning monetary worth to a person's life through metrics like 'QALY' undermines this core principle and obstructs physicians' ability to provide quality care to all individuals, particularly those with disabilities and chronic illnesses. I am thankful that the House did the right thing today and passed this legislation, and I urge swift passage in the senate.” “As a physician, I believe it is vital that our health care system treats all patients with the dignity and respect they deserve. ‘QALY’ measurements put a dollar value on a person’s life and interfere with a physician’s ability to care for all of their patients by devaluing treatments for those who are disabled and chronically ill,” said Rep. Brad Wenstrup, D.P.M. “We should value human life—and work toward healthy human lives—not devalue human life nor indignify one another. I am proud the House voted to protect patients by passing this legislation today, and I hope that the Senate and White House will support this important bill.”  BACKGROUND : H.R. 485 would prohibit the use of Quality-Adjusted Life Years (QALYs) and other similar discriminatory measures in all federal programs—an expansion from the current prohibition that only applies in a limited fashion to the Medicare program.   QALYs devalue the life of people with a disability or those with chronic illnesses to determine whether the treatment is cost-effective enough to be paid for by the federal government. The use of QALYs is a clear form of discrimination.



Chair Rodgers Speaks on the House Floor to Protect Patients from Discrimination in Health Care

“Let’s give people with disabilities, rare diseases, or chronic illness hope.”  Washington D.C. —  House Energy and Commerce Committee Chair Cathy McMorris Rodgers (R-WA) spoke on the House Floor today in support of H.R. 485, the  Protecting Health Care for All Patients Act . Her legislation would ban Quality-Adjusted Life Years (QALYs) and other similar measures from being used in federal health care programs, removing a key way that these programs discriminate against people with disabilities and those with chronic and rare diseases.  SUPPORTING DIGNITY FOR ALL   “I rise in strong support of H.R. 485, my Protecting Health Care for All Patients Act , which affirms every person’s life has value by banning the use of Quality-Adjusted Life Years, or QALYs, and similar discriminatory measures from all federal health programs.    “As many of you know, my son Cole was born with a special, extra twenty-first chromosome—most of you know it as Down syndrome.   “When Cole was born, doctors gave us a long list of challenges and chances for heartache.    “It was difficult, but I could have never imagined just how positively he would impact this my life, my family's life, and the world.   “Today, Cole is a fun-loving sixteen-year-old with big dreams. He wants to be a football player, a pastor, and a race car driver. He’s on the basketball team and plays the drums. “For Cole, the sky’s the limit.    “Cole, and others with disabilities, deserve every opportunity to succeed.  “We shouldn’t be discounting their potential or pre-judging their quality of life just because of their disabilities.”   DISCRIMINATION IN HEALTH CARE    “Unfortunately, several tools frequently used in our health care system do just that.   “QALYs and other similar discriminatory measures assign a dollar value on the life of a patient to decide if a certain treatment is cost-effective, oftentimes discounting an individual’s worth and need for care solely because of their disability or chronic illness.    “It means a bureaucracy coldly determines the value of someone’s life and can deny necessary health care due to that calculation.    “Measurements like QALYs remove the consideration of unique circumstances and health conditions of a patient and their doctor’s judgment from deciding what’s best for the patient.    “I’m not alone in opposing the use of these measures.   “Democrats acknowledged this when they banned the use of QALYs in Medicare in the Affordable Care Act.   “In 2020, the Democratic National Committee platform stated that 'Democrats will ensure that people with disabilities are never denied coverage based on the use of quality-adjusted life-year (QALY) indexes.' “The non-partisan, National Council on Disabilities wrote a report in 2019 titled 'Quality Adjusted Life Years and the Devaluation of Life with a Disability' that condemned the usage of QALYs and has continued to write additional letters to Congress urging that we ban their use.   “Additionally, we’ve heard from nearly 200 advocacy groups spanning the political spectrum who are calling on Congress to prohibit the use of QALYs and other discriminatory measures.” BANNING QALYs  “This legislation, the Protecting Health Care for All Patients Act , bans federal payers, like Medicaid and VA Health Care, from using QALYs or other discriminatory measures that devalue the lives of people with disabilities and chronic or rare diseases, and it does this by simply applying the current ban on QALYs and other similar measures that exists in Medicare to all federal payers. “In passing this bill, it will mean that health care bureaucracies can no longer discriminate against the weakest and most vulnerable patients, and it will help ensure that people can get the health care that they and their doctors think best. “This would be a big deal. “Medicaid is the largest payer for people with disabilities, and we are letting it use measures that discriminate against the very people that it was designed to support. “And that’s to say nothing of the millions of injured or disabled veterans who rely on the VA for their health care, which is also allowed to use these types of measures. “However, let me be clear in this, H.R. 485 does not prohibit federal health care programs from rewarding value or finding other ways to hold down costs. “For example, if a treatment does not work or shouldn’t be covered, or it’s more appropriate to start with other, more cost-effective treatments first. “Nothing in this bill will preclude federal payers from continuing to make these kinds of coverage decisions. “In fact, the National Council on Disability has already identified alternative ways to measure value that do not devalue the life of someone with a disability or chronic disease.” GIVING HOPE “Because of Cole, I’ve spent much time in Congress as an ability advocate—encouraging people to focus on every individual’s God-given talent and potential. “Millions of Americans like Cole need their voices to be heard. “Whenever I meet with someone with a disability or chronic illness, or with their family, I hear the same thing over and over again. “They want the same chances to succeed in life as everyone else. “I hope that banning the use of discriminatory measures by federal payers against people with disabilities and chronic illness—and affirming every person’s life has value—is something can come together on. “Let’s give people with disabilities, rare diseases, or chronic illness HOPE.  “I urge support on this important legislation.”