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Health Advisory Council Newsletter | Winter 2022

Updates from our Members

America’s Health Insurance Plans (AHIP)


AHIP and its coalition partners are working diligently to promote awareness of and preserve the patient protections included as part of the No Surprises Act, which took effect on January 1. AHIP is responding to legal challenges that threaten the core elements of the No Surprises Act that will lower health care costs for patients. In January, AHIP filed amicus briefs in support of the Biden Administration’s rulemaking process in legal challenges brought by Texas Medical Association, American Medical Association, and Association of Air Medical Services. AHIP will continue to respond to various legal challenges to the law and work to ensure no American has to face a surprise medical bill that could lead to financial ruin.

The Coalition Against Surprise Medical Billing (CASMB), of which AHIP is a founding member, continues to engage stakeholders, lawmakers, and press to elevate the new patient protections and ensure they remain in place. CASMB released a statement in response to legal challenges by the American Medical Association and American Hospital Association, and continues to support its members filing amicus briefs to defend the No Surprises Act.

Following recent guidance from the Biden Administration, health insurance providers are covering the costs of over-the-counter tests for COVID-19. Click here to learn more about health insurance providers’ announcements on how members can access covered tests.

To learn more about AHIP and CASMB efforts to protect patients from surprise medical bills and health insurance providers’ coverage of over-the-counter COVID-19 tests, contact Nicole Eynard at neynard@ahip.org.

Consumers for Quality Care


Consumers for Quality Care (CQC) and 14 partner organizations sent a thank-you letter to Senator Raphael Warnock (D-GA) for introducing S.3339 Capping Prescription Costs Act of 2021. This legislation would limit the cost-sharing on prescription drugs under marketplace health plans, prioritizing patients and consumers. Senator Warnock took an important step towards a more equitable health care system and we hope S.3339 is a catalyst for Congress to prioritize patients in their legislation.

Read our thank-you letter here.

Deterra Drug Deactivation and Disposal System

The Deterra® Drug Deactivation and Disposal System has won a 2021 SEAL Business Sustainability Award for its at-home drug disposal pouches and containers. The SEAL (Sustainability, Environmental Achievement & Leadership) Awards recognize companies’ leadership, transparency and commitment to sustainable business practices.

Deterra was honored in the Sustainable Product category, which highlights innovative and impactful products that are literally “purpose-built” for a sustainable future. Key criteria for selection included impact metrics, innovation, and how the product inspires others to adopt more environmentally conscious practices. Deterra uses proprietary, organic activated carbon to deactivate unwanted prescription and over-the-counter medications, rendering them inert, irretrievable and safe for disposal in the normal household trash. Deterra Pouches are manufactured in a factory built to LEED® Silver sustainable building guidelines on equipment powered by 100 percent wind-generated electrical energy, and the packaging is USDA Certified, 50 percent or more bio-based, and has earned the I’m green™ plastic certification from Braskem.

To learn more, read the full SEAL Awards press release.

Eli Lilly

Kelly Copes-Anderson, head of diversity, equity, and inclusion at Eli Lilly and Company, recently penned an op-ed, “Recognizing obesity as a disease, not a choice, is a step toward health equity.”

The piece, co-authored with Fatima Cody Stanford, an obesity medicine and nutrition physician and scientist at Massachusetts General Hospital and Harvard Medical School, highlights the Treat and Reduce Obesity Act of 2021 that, if enacted, would update Medicare’s outdated policies by recognizing obesity as a treatable medical condition and expanding access to clinically effective treatments for it.

FDA Office of Women’s Health

This past November, in recognition of National Diabetes Awareness Month, the FDA Office of Women’s Health launched a new educational video titled “Be Empowered, Understanding Diabetes.” This resource highlights some of the ways diabetes can impact women differently and shares the unique experiences of women affected by diabetes. We encourage you to share the tips and resources found in the video and corresponding blog with anyone you know living with diabetes. Our latest blog post focuses on American Heart Month and can be viewed here. To close out 2021, a recap of accomplishments throughout the year was shared with stakeholders via an e-mail blast but can also be accessed here via our webpage. If you are not subscribed to the OWH newsletter, the subscription option is located at the top of the OWH homepage, www.fda.gov/womens.

Health Equity Council

Thirty-five Diverse Health Advocacy Orgs Urge CMS To Prioritize Equity & Access to Alzheimer’s Treatments:  The Health Equity Collaborative, together with UsAgainstAlzheimer’s, led a coalition letter addressed to the Centers for Medicare and Medicaid Services (CMS), conveying concerns about the healthcare access implications of its recent draft National Coverage Determination (NCD). The letter, featuring 35 leading patient, provider, disability, and civil rights organizations, was submitted as part of CMS’ public comments on the draft decision. See the full letter here.

Health Equity- Ending Racism in the US Health Care System: On March 12, the Health Equity Collaborative will host a panel discussion at SXSW in Austin, TX, with a group of advocates and subject matter experts from national civil rights and advocacy organizations. The discussion will focus on engaging with Congress and the Biden Administration to make health equity a priority by addressing social determinants of health to effectively solve for pervasive health disparities faced by communities in most need. Speakers include: Tammy Boyd, Black Women’s Health Imperative, Amy Hinojosa, MANA, A National Latina Organization, Justin Nelson, National LGBT Chamber of Commerce, and Jason Resendez, UsAgainstAlzheimers. Learn more here: https://schedule.sxsw.com/2022/events/PP116966

National Community Pharmacists Association

The National Community Pharmacists Association is asking patients to voice their support for a CMS Proposal that would lower Medicare Part D prescription drug costs at the pharmacy counter. CMS recently released a proposed rule that, if finalized, could lower costs for Medicare beneficiaries. Patients need to voice their support for the proposal by submitting comments urging CMS to finalize a workable framework for pharmacy DIR fees and ensuring all discounts are reflected at the pharmacy counter. There will be template comments available on www.fight4rx.org starting the week of February 14 that patients can easily personalize and submit. Please share this information with your stakeholders and encourage them to take action to lower their out-of-pocket costs.

Health Advisory Council Newsletter | Winter 2022

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PBPA Commends HHS Funding to Support Maternal and Infant Health

The Preterm Birth Prevention Alliance (PBPA), a coalition of maternal and women’s health advocates dedicated to improving preterm birth outcomes in the United States and addressing its disproportionate impact on women of color, applauds the U.S. Department of Health and Human Services (HHS) for awarding nearly $350 million to states across the country to improve support for safe pregnancies and healthy babies.

“For far too long, U.S. maternal health care has lagged behind that of other developed countries, particularly for women of color,” noted Sally Greenberg, Executive Director of the National Consumers League. “This additional funding will enable local health departments and nonprofits to better address the health care needs of the most vulnerable mothers and their babies.”

The funding, awarded by HHS’ Health Resources and Services Administration (HRSA), will support home visiting services, increase access to doulas, address infant mortality and maternal illness, and improve data reporting on maternal mortality.

“Maternal health care in the U.S. has consistently failed women of color,” Greenberg continued.  “We applaud HHS for this additional funding that will help to improve the maternal health for all mothers and babies, especially women of color and those most at-risk.”

The funding announcement follows the release of a report by the U.S. Commission on Civil Rights which found that Native American women are more than two times more likely to die from pregnancy-related complications than white women in the U.S. This disparity was further exacerbated for Black women in the U.S., who are three to four times more likely to die from pregnancy-related complications than white women.

“In addition to expanding programs to support maternal health, we must increase representation from racially and ethnically diverse groups in research and clinical trials, particularly those studying treatment options to prevent maternal morbidity and mortality,” said Greenberg.  “The need for the additional HHS funding and the report from the Commission on Civil Rights clearly illustrate how critical representative research and real world evidence are to ensuring all mothers and their babies have the same opportunity for the best possible health outcomes.”

Diverse research for a diverse America: The value of equitable, real-world research

August 12, 2021/in Blog, Health, Prevention Blog Post

By Sally Greenberg, NCL Executive Director

While the COVID-19 pandemic has led to hardship for all Americans, it is clear that people of color have been disproportionately burdened. Across the health care continuum, addressing this disparity has become part of the broader conversation about the history of systemic racism and the underlying social determinants of health that negatively affect the mental, physical, and economic health of individuals and entire communities.

The pandemic has underscored persistent health disparities, and there is growing recognition that representation in research and clinical trials can have a profound impact on health outcomes. A lack of representation from racially and ethnically diverse groups in research and clinical trials have typically led to gaps in data, missing the opportunity to assess the full impact of various treatments and drugs across a range of populations. The collection and use of real-world research and data to inform the potential use, risks, and benefits of medical products and treatments can ultimately lead to better health outcomes, particularly for those who have been underrepresented in the past.

Existing efforts to improve inclusion

Efforts to expand diversity and representation in medical research are underway in Congress. Policymakers are encouraging the incorporation of Real World Evidence (RWE) in drug development through the recent Cures 2.0 draft legislation released by Reps. Diana Degette (D-CO-1) and Fred Upton (D-MI-6). While the status quo limits us from effectively reaching underserved populations, the proposed legislation would allow studies that include RWE for some drugs after they have been approved. At the heart of this issue is a growing appreciation that the same therapy can affect different populations in different ways, which is why Cures 2.0 supports collecting data that more accurately reflects the unique experiences and needs of patients across diverse populations.

Recognizing the potential for RWE in maternal health

The lack of representative research in the field of maternal health is undeniable, and its implications are staggering. The dismal state of maternal care in the United States reflects how our health care system has failed women of color, including by not adequately studying treatment options to prevent maternal morbidity and mortality. The need for RWE is clear when you consider the persistent disparities in health outcomes that plague minority communities.

Preterm birth and its disproportionate impact on women of color is a stark illustration of the need to make progress on representative research in maternal health. Preterm birth is the second-largest contributor to infant death in America today. Despite the tremendous physical, emotional, and financial toll that preterm birth continues to take on our country — disproportionately so on women and families of color — not enough therapeutic tools currently exist to prevent it.

Today, “17P,” the only FDA-approved treatment to help reduce the likelihood of spontaneous, recurrent preterm birth in the United States is at-risk of being withdrawn from the market in all its forms, including the branded product and five generic versions. Unfortunately there is conflicting evidence from two different clinical trials, one representative of a diverse U.S. population and another studied in a largely white population in Europe. It’s not a straightforward comparison. If 17P is withdrawn, the women most affected by preterm birth, predominantly women of color, would be left without an FDA-approved treatment option.

The FDA is considering the path forward, including additional data collection through leveraging RWE from past patient use. The success of the first (approval) trial for 17P in the impacted communities signals the importance of RWE. Continued access to 17P is, at its core, a matter of health equity. Black women must not yet again be left vulnerable to a system that historically has overlooked them.

PRETERM BIRTH PREVENTION ALLIANCE APPLAUDS FDA’S GRANTING OF HEARING FOR THE ONLY FDA-APPROVED THERAPIES TO REDUCE RECURRENT PRETERM BIRTH

WASHINGTON, DC, August 26, 2021 –

Preterm Birth Prevention Alliance a coalition of maternal and women’s health advocates dedicated to improving preterm birth outcomes in the United States and addressing its disproportionate impact on women of color, commends the U.S. Food and Drug Administration (FDA) for granting a public hearing to discuss 17P, the only FDA-approved class of branded and generic treatments to reduce preterm birth in indicated patients.

We appreciate the FDA’s willingness to hear directly from individuals facing prematurity and the providers who treat them about their experiences with 17P,” said National Consumer League’s Executive Director Sally Greenberg. “It is an important step towards better understanding variations in efficacy across diverse populations and ensuring all women have an equal chance at the best possible outcomes.”

Last week, the FDA agreed to grant Covis Pharma, the manufacturer of the branded 17P product Makena its request for a public hearing to discuss 17P. Hydroxyprogesterone caproate—or “17P”—has been approved since 2011 and is the only FDA-approved class of treatments to help prevent spontaneous, recurrent preterm birth in the United States. In 2020, the FDA proposed withdrawing 17P in all its forms, including the branded product and its five generic versions, based on conflicting efficacy data from two studies composed of vastly different populations, one predominantly inclusive of women in the U.S. most vulnerable to preterm birth and one not.

“Mothers and birthing people deserve access to the best possible treatments to prevent preterm birth. We cannot achieve birth equity if we study pregnant women as a monolith,” said Blythe Thomas, Initiative Director of 1,000 Days. “It is only by systematically researching the real-world, post-market impact of 17P on individuals from a variety of racial and ethnic backgrounds, while maintaining access for all affected, that we can reduce disparities in maternal and infant health.”

While the hearing date has not yet been set, the Alliance looks forward to sharing the perspectives of affected individuals and their physicians with the agency once the hearing is scheduled and will continue to advocate for at-risk moms and babies of all races and ethnicities.

###

ABOUT THE PRETERM BIRTH PREVENTION ALLIANCE

The Preterm Birth Prevention Alliance (PBPA) is a coalition of maternal and women’s health advocates who share a common concern about the state of preterm birth in the United States and the proposed market withdrawal of 17P, the only FDA-approved class of treatments to help prevent spontaneous, recurrent preterm birth. Formed in 2021 by the National Consumers League, the 15 partners in the PBPA seek to improve preterm birth outcomes in the United States by maintaining access to safe, FDA-approved treatment options and advocating for more diverse medical research that adequately represents the experiences of women and newborns of color. Women of color need a seat at the table. To learn more, visit www.pretermbirthalliance.org

LEADING PATIENT ADVOCATES LAUNCH PRETERM BIRTH PREVENTION ALLIANCE TO PROTECT CRITICAL ACCESS TO THE SOLE FDA-APPROVED CLASS OF THERAPIES TO REDUCE RECURRENT PRETERM BIRTH

WASHINGTON, DC, April 20, 2021 – Today, the National Consumers League (NCL), along with a coalition of patient advocacy organizations dedicated to advancing the health of mothers and infants, announced the launch of the >Preterm Birth Prevention Alliance.

Members of the Alliance are joining forces in an effort to preserve patient access to the only Food & Drug Administration-approved class of treatments for pregnant women who have previously had an unexpected, or spontaneous, preterm birth. Together, Alliance members seek to ensure that the Food & Drug Administration (FDA) hears concerns from the full range of stakeholders about the potential risks and impact of withdrawal for at-risk pregnant women and their providers.

For the fifth year in a row, the U.S. preterm birth rate has increased (to 10.2 percent of births), and preterm birth and its complications were the second largest contributor to infant death across the country. Preterm birth also represents a significant racial health disparity, with Black women in America experiencing premature delivery at a rate 50 percent higher than other racial groups throughout the country.

However, in 2020, the FDA >proposed withdrawing hydroxyprogesterone caproate, commonly called “17P” or “17-OHPC”, the only FDA-approved class of branded and generic treatments to help prevent the risk of preterm birth in women with a history of spontaneous preterm birth. The FDA is currently determining whether to hold a hearing on the status of 17P, based on conflicting efficacy data from two studies composed of vastly different patient populations, one inclusive of women in the U.S. most vulnerable to preterm birth and one not.

“We’re fighting for a more inclusive healthcare system that gives everyone an equal chance to have the best outcomes possible,” said Sally Greenberg, executive director of the National Consumers League. “We don’t believe that removing 17P from the market without gaining a better understanding of who could benefit the most from its use is in the best interests of patients, nor their healthcare providers, particularly as there are no other approved treatment options available.”

To date, 14 organizations have joined NCL to advocate for the health interests of at-risk pregnant women and infants, including: 1,000 Days; 2020 Mom; American Association of Birth Centers; Black Mamas Matter Alliance; Black Women’s Health Imperative; Expecting Health; Healthy Mothers, Healthy Babies Montana; HealthyWomen; Miracle Babies; National Birth Equity Collaborative; National Black Midwives Alliance; National Partnership for Women & Families; Sidelines High-Risk National Support Network; and SisterReach.

“As a trained obstetrician and gynecologist, I know firsthand the impact of preterm birth on Black women and birthing people. I also know that racism – not race – is the driving factor leading the disproportionate impact of preterm birth on Black women and birthing people thereby exacerbating systemic inequities in maternal and infant health. To achieve birth equity, which is the assurance of the conditions of optimal births for all people with a willingness to address racial and social inequities in a sustained effort, we must work to protect and uphold a standard of care for spontaneous, recurrent preterm births and ensure it remains accessible and affordable for all who stand in need,” added Dr. Joia Crear Perry, founder and president of the National Birth Equity Collaborative.

The Preterm Birth Prevention Alliance is calling for the FDA to grant a public hearing to fully consider all of the data, additional research methods, and stakeholder perspectives before deciding whether to withdraw approval of this critical class of therapies. The health of America’s moms and babies warrants the utmost care and consideration.

###

ABOUT THE PRETERM BIRTH PREVENTION ALLIANCE

The Preterm Birth Prevention Alliance is a coalition of maternal and women’s health advocates who share a common concern about the state of preterm birth in the United States and the proposed market withdrawal of 17P, the only FDA-approved class of treatments to help prevent spontaneous, recurrent preterm birth. Formed in 2021 by the National Consumers League, we seek to improve preterm birth outcomes in the United States by maintaining access to safe, FDA-approved treatment options and advocating for more diverse medical research that adequately represents the experiences of women and newborns of color. Women of color need a seat at the table. To learn more, visit www.pretermbirthalliance.org.

Initial support for the Preterm Birth Prevention Alliance is provided by Covis Pharma.

MEDIA CONTACT:

Carol McKay, carolm@nclnet.org

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