• Facebook
  • Twitter
  • Instagram
  • Youtube
  • LinkedIn
  • Skype
  • Take Action
  • Partner With Us
  • DONATE
National Consumers League
  • About NCL
    • About Us
    • Our Programs
    • Leadership
    • History
    • Trumpeter Awards
    • Legal Work
    • Careers
    • NLC Policies
    • Take Action
  • Our Work
    • Consumer Education
    • Consumer Protection
    • Food & Nutrition
    • Fraud Prevention
    • Health
    • Workers Rights
  • Thought Leadership
  • Publications
    • Annual Report
    • Bulletin
    • Top Ten Scams of 2024
    • Tribute Book 125 Years
  • Newsroom
    • News & Highlights
    • Press Releases
    • Podcast
    • NCL in the News
    • Keeping Up With Sally & Staff
    • Media Contacts
  • Contact
  • Search
  • Menu Menu
  • DONATE
  • About NCL
    • About Us
    • Our Programs
    • Leadership
    • History
    • Trumpeter Awards
    • Legal Work
    • Careers
    • NCL Policies
  • Our Work
    • Consumer Education
    • Consumer Protection
    • Food & Nutrition
    • Fraud Prevention
    • Health
    • Workers Rights
  • Thought Leadership
  • Publications
    • Annual Report
    • Bulletin
    • Top Ten Scams of 2024
    • Tribute Book 125 Years
  • Newsroom
    • News & Highlights
    • Press Releases
    • Podcast
    • NCL in the News
    • Keeping Up With Sally & Staff
    • Media Contacts
  • Contact
  • Take Action
  • Partner With Us

Health Advisory Council Newsletter | Fall 2022

Member Spotlight: Infusion Access Foundation

Kindyl Boyer

Director, Advocacy

Q: How long have you been at the Infusion Access Foundation and what do you love most about your role there?

A: I  just had a handful of people, including my retired uncle, message me on LinkedIn saying, “congrats on your work anniversary!” so I know the answer to this – two years and two months!

I’ve always been someone who sticks up for “the little guy.” Whether that was a classmate or the underdog of two competing teams, I always knew who I was rooting for. In the context of the American healthcare system, there are two huge giants battling it out– insurance groups and pharmaceutical companies. “The little guy” is the patient. The person who has just been given a life-changing diagnosis and is now expected to navigate the convoluted maze that is our healthcare system. I think what I love most about my role is that my job is to stick up for patients, whether that’s on the state- or federal-level advocating for laws that would improve patient access, affordability, and equity or on the insurance payor side advocating for insurance coverage. I never want anyone managing a chronic or autoimmune disease to feel alone or like they have no one to turn to, and I love that IAF allows me to be there for those individuals and advocate on their behalf.

Q: What are the biggest issues that infusion patients face in receiving treatment and being able to adhere to their treatment plans?

A: Having a chronic illness or autoimmune condition is a full time job, but unfortunately, not a paying one. Patients are not only taking on the cost burden of managing their conditions, but they are also taking on the administrative burden of navigating our healthcare system. I wish I could say that as soon as your doctor prescribes a treatment, you are able to receive that treatment, and your insurance will cover all or most of the cost. But, that’s not the case. Patients are constantly jumping through hoops to access their prescribed medications, from step therapy protocols that require patients to try and fail an alternative treatment before they can take the one their doctor recommended to mid-year coverage changes, where an insurer can suddenly decide that they will no longer cover your medication halfway through your plan’s coverage year. From what I’ve heard from infusion patients, it’s the constant battle to afford and access their medications that prevents adherence. It’s also just hard to do it all. We all live busy lives, and managing a chronic illness is no small task.

Q: What policy issues has IAF been prioritizing to advocate for infusion patients?

A: IAF advocates for policies that will improve patient access, equity, and affordability. It is our job to look out for threats to these priorities. Whether that’s through talking to patients or monitoring new insurance or legislative policies. As I mentioned previously, two of the biggest threats to patient access, include step therapy and non-medical switching. The former refers to an insurance tactic  known as “fail first” that requires patients to try and fail a medication before being allowed to take the medication they were originally  prescribed. We aren’t talking about Prime Wardrobe; this is not your harmless try-on-at-home-and-return-if-it-doesn’t-fit deal. We are talking about someone who is experiencing real symptoms from a chronic disease being expected to try a medication their doctor did not prescribe, “prove” that it doesn’t work for them by getting sicker or watching their condition worsen, and only then will their insurance company allow them to take the medication prescribed by their physician.

The latter threat- non-medical switching-  is another insurance practice that forces patients to switch medications for “non-medical” reasons. IAF has heard from patients who have been stable on their medication for years and suddenly, in the middle of their plan year, their insurance company mandates that they switch to a different medication. As you can imagine, these patients were scared of what that change would mean to their disease, quality of life, well-being, and employment. They didn’t want to switch from something that was keeping their disease stable for a reason unrelated to their health. This is an insurance company playing doctor. Putting aside the medical concerns, it is completely unacceptable in every other industry to change a contract in the middle of its term, yet insurance companies are allowed to change the conditions of their contracts with patients by either raising the cost responsibility or removing a medication from their formulary entirely (a drug formulary is the list of drugs an insurer will cover).

In regards to patient affordability, IAF has supported federal and state legislation that will shine a light on pharmacy benefit managers (PBMs) and bring greater transparency to the practices of these drug middlemen. Although PBMs market themselves as necessary negotiators serving as a liaison between drug manufacturers and insurance companies, it’s pretty clear where their allegiances lie when you discover that most are owned by major insurance companies. The way the system currently works is that drug manufacturers offer PBMs rebates in exchange for placement on an insurance company’s formulary.  PBMs often will pocket these rebates and fail to pass the savings on to patients. PBMs are also much more likely to select higher cost drugs which equate to bigger rebates for them.

Making sure patients can take advantage of cost assistance is another top priority for us. Many infusion or injectable patients rely on copay cards or third-party assistance to afford their medications. These cards typically look like your standard debit card and can be used at your infusion office or a pharmacy counter. Oftentimes, these cards are distributed by a drug’s manufacturer, but it can also come from a third-party charity. Regardless, it is real money that a patient can use to bring down the cost of their medication. Insurers are not a fan of these cards or copay assistance in general. Patients can better afford their medications when they have external assistance, and they can also reach their deductibles or out-of-pocket maximums faster. This requires insurance companies to pick up the bill faster. As you can imagine, insurers don’t like this. So in response, insurers have implemented “copay accumulator programs” or “copay maximizer programs.”These programs limit how much third party cost assistance counts towards a patient’s out-of-pocket expenses. IAF is working to ban these programs in all 50 states and federally.

Lastly, IAF is acutely aware that the structural inequities in our country mean that different groups of people experience disease management differently. Whether that’s due to unconscious bias at the doctor’s office due to the color of your skin or one’s proximity to the closest infusion center. We know that not everyone has the same opportunity to achieve optimal health. Therefore, addressing health disparities in the infusion community is a top priority for the IAF team. We hope that by listening to patient advocates and different community leaders, we can better understand the needs of certain patients and meet these individuals where they are.

Q: How does IAF plan to continue engaging with patients to inform its policy and advocacy work going forward?

A: As 2022 comes to a close, we have been asking ourselves–how can we improve in 2023? We know that all of the policy issues I just mentioned are likely to remain relevant for quite some time. However, it’s important to have consistent “check ins” with the patient community, making sure that the things we are advocating for are actually important to patients. That’s been the main driving force behind our most recent focus group project. We are currently in the midst of meeting with several groups of infusion patients and learning about their experiences navigating the healthcare system and receiving infusion treatments. We hope these conversations will inform our advocacy and overall strategy for 2023 and beyond. We have also recruited patient advocates across disease states and diverse backgrounds to be members of the new IAF Stakeholder Advisory Council (IAF STAC). IAF STAC will serve as a collective of individuals affected by and invested in affordable access to infusion and injection medications. This group will work with and advise IAF staff on mission-critical programs to ensure that all of IAF’s offerings are appropriate, timely, patient-driven, and representative of the needs of a diverse patient population. We hope 2023 will be our most impactful year yet.

  • Health Advisory Council Newsletter | Fall 2022

    Newsletter Home

    NCL Health Policy at Work

    Member Updates

    Member Spotlight: Infusion Access Center

    • Our Impact

      The work of the National Consumers League is making a difference in people’s lives across the country. Meet some of the consumers touched by our programs.

      Read about NCL’s impact

    • Preventing yet another victim

      Paige, 55, a Nashville wife and mother of two, answered an employment ad for secret shoppers. Before sending payment to the scammers, she reached out to NCL.

      Read about NCL’s impact

    • Building a stronger generation

      A grease fire flared up in Decklan’s kitchen. As his family scrambled and panicked, fearing that the whole house might erupt in flames, Decklan remained calm. He hurried over to the pantry, grabbed some baking soda, and dumped it on the fire quickly extinguishing the blaze.

      Read about NCL’s impact

    • Script Your Future saved my life

      Cincinnati resident Charles, 45, lost his computer business — and health insurance— during a time of economic downturn. A diabetic, Charles was now unable to afford his medication. He stopped taking it which made him seriously ill and put his life at risk.

      Read about NCL’s impact

    • For a safer workplace

      Jeremy is a fast-food worker who has been employed at a number of Chipotle restaurants in New York City. When he was just 20 years old, he took part in an NCL research project that revealed that management practices within the fast food chain were putting workers—and food safety for customers—at risk.

      Read about NCL’s impact

    • Our Impact

    • Preventing yet another victim

    • Building a stronger generation

    • Script Your Future saved my life

    • For a safer workplace

    Our Programs

    Child Labour Lifesmart script your future Fraud.org Logo 6 R2OC

    About NCL

    • About Us
    • Our Programs
    • Leadership
    • History
    • Trumpeter Awards
    • Legal Work
    • Careers
    • NCL Policies

    Our Work

    • Consumer Education
    • Consumer Protection
    • Food & Nutrition
    • Fraud Prevention
    • Health
    • Workers Rights

    More

    • Thought Leadership
    • Newsroom
    • Privacy Policy
    • Contact
    • Take Action
    • Partner With Us
    DONATE
    Our office is open: Mon-Fri, 9 am – 5 pm, Eastern
    Phone: (202) 835-3323
    Fax: (202) 835-0747
    Email: info@nclnet.org
    © Copyright 2025 - National Consumers League
    Scroll to top

    [gravityform id=”11″ title=”true” description=”false”]

    [gravityform id=”9″ title=”true” description=”false” ajax=”true”]

    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

    <embed src=”https://art19.com/shows/ce489618-5918-423a-9b5f-35ce4c28ca09/episodes/2f8fa6fc-6aad-4f1f-bf13-3bdb0aa41732/embed?theme=light-custom&primary_color=%231850a3″ width=”100%” height=”300″></embed>

    <iframe src=”https://art19.com/shows/we-can-do-this/episodes/c7b22520-c0aa-4718-9b59-4ee67e494547/embed?theme=light-custom” style=”width: 100%; height: 200px; border: 0 none;” scrolling=”no”></iframe>

    <iframe src=”https://art19.com/shows/we-can-do-this/episodes/ab80228e-48d9-4a45-a894-a1bfc4e41c64/embed?theme=light-custom” style=”width: 100%; height: 200px; border: 0 none;” scrolling=”no”></iframe>

    <iframe src=”https://art19.com/shows/we-can-do-this/episodes/ea08cbc0-f9f2-4082-9222-4e33f68b6826/embed?theme=light-custom” style=”width: 100%; height: 200px; border: 0 none;” scrolling=”no”></iframe>

    <iframe src=”https://art19.com/shows/we-can-do-this/episodes/5039453f-6008-413a-9f6b-c9be649fd26e/embed?theme=light-custom” style=”width: 100%; height: 200px; border: 0 none;” scrolling=”no”></iframe>

    <iframe src=”https://art19.com/shows/we-can-do-this/episodes/fafb46f8-6d90-4cd8-91be-616366d1b8ca/embed?theme=light-custom” style=”width: 100%; height: 200px; border: 0 none;” scrolling=”no”></iframe>

    <iframe src=”https://art19.com/shows/we-can-do-this/episodes/25f0485d-bbce-46c8-bb90-139dcf1a2e7b/embed?theme=light-custom” style=”width: 100%; height: 200px; border: 0 none;” scrolling=”no”></iframe>

    <iframe src=”https://art19.com/shows/we-can-do-this/episodes/ffbcae35-84c5-4c8b-9686-6e2c79679dd0/embed?theme=light-custom” style=”width: 100%; height: 200px; border: 0 none;” scrolling=”no”></iframe>

    <iframe src=”https://art19.com/shows/we-can-do-this/episodes/520bdd73-d142-4508-9706-d81b5c042dff/embed?theme=light-custom” style=”width: 100%; height: 200px; border: 0 none;” scrolling=”no”></iframe>

    <iframe src=”https://art19.com/shows/we-can-do-this/episodes/12354e8b-bf15-4eba-b34f-20e435df3bb7/embed?theme=light-custom” style=”width: 100%; height: 200px; border: 0 none;” scrolling=”no”></iframe>

    <iframe src=”https://art19.com/shows/we-can-do-this/episodes/e2091efc-d66d-49f4-aa8e-8e6249858310/embed?theme=light-custom” style=”width: 100%; height: 200px; border: 0 none;” scrolling=”no”></iframe>