52 Years Consumer Action a celebration of service
NCL has been invited to Consumer Action’s 52 Anniversary Celebration on November 2, 2023. We are looking forward to your participation in this special event.
NCL has been invited to Consumer Action’s 52 Anniversary Celebration on November 2, 2023. We are looking forward to your participation in this special event.
AARP Director of Fraud Prevention Kathy Stokes will join NCL experts for a conversation about how advocates, media, and policymakers can create victim-centered dialogues about fraud.
Sally Greenberg attended the Consumer Federation of America National Food Policy Conference.
Sally Greenberg, NCL CEO, attended the Friends of Cancer Research conference “Supporting the Use of Real World Data in Oncology Drug Development” September 11, 2023 where FDA Commissioner Dr. Robert Califf spoke.
On Monday, July 24, 2023, our Health Policy Director Robin Strongin spoke at the Accelerate Approval for Patients Congressional Briefing. Hosted by Patients Rising Now, the event focused on the new dynamics between CMS and FDA and its impact on patients.
NCL CEO Sally Greenberg spoke at this year’s We Work For Health Summit. As part of panel focusing on PBMs, Sally shared her knowledge of how patient health suffers as PBMs are involved in practices such as the need for prior authorizations and step therapy.
Sally Greenberg attended the Public Citizen’s 50th Anniversary Gala at the National Portrait Gallery and Smithsonian American Art Museum in Washington, DC.
Industry and policy leaders gathered for the Spring Health Advisory Council meeting. Critical topics discussed included addressing barriers to medication access and improving primary care accessibility.
Create a Patients’ Bill of Rights for People with overweight and obesity, the National Consumers League and the National Council on Aging are conducting a series of town halls in 2023 to help determine what “rights” are necessary for older adults to be in charge of their own health when seeking and obtaining obesity care.
The availability of cannabinoid-containing products following the passage of the 2018 Farm Bill has increased exponentially, partially driven by demand and interest in its potential health and wellness benefits. However, questions remain on the legality, quality, safety, and effectiveness of many of these products.
John participated in a wide-ranging scam prevention roundtable in Arlington, VA hosted by Amazon. The event brought together stakeholders from consumer groups, tech companies, and the financial sector to discuss ways to improve scam awareness and victim support.
A Hill briefing on accessing lower cost bio biosimilars, an alternative to name-brand biologic pharmaceuticals, will take place on Wednesday, May 17. Sally and the following distinguished leaders are scheduled to share their experiences:
Jason Harris, Vice President Government Affairs, National Psoriasis Foundation
Anna Hyde, Vice President Policy and Access, The Arthritis Foundation
Bret Jackson, President & CEO, Economic Alliance of Michigan
Sally and Reid Maki attended an event hosted by Unchained at Last, the organization that is dedicated to ending forced and child marriage in the United States. The exclusive event featured a conversation between Former First Daughter Chelsea Clinton and Fraidy Reiss, the Founder and Executive Director of Unchained at Last. Fraidy is an activist against forced marriage, child marriage, and teenage marriage.
Chief Counsel for Development & Innovation at the FTC’s Bureau of Consumer Protection Dan Salsburg will join with NCL experts to discuss business email compromise.
NCL staff will be attending the 29th LifeSmarts National Championship in Cincinnati.
Senator Sheldon Whitehouse and his Chief of Staff, Monalisa Dugué, join Georgetown University Law Center adjunct faculty member David Goodfriend for a discussion on technology policy, how they view the Supreme Court and what has influenced it, climate issues, and the role of staff in the legislative process.
Sally Greenberg attended the Antitrust Seminar at Utah School of Law in Salt Lake City.
In honor of National Credit Education Month, NCL is partnering with FICO.
To mark National Women’s History Month NCL honors five women who continue to dedicate their career advocating and fighting for consumers.
NCL Vice President John Breyault co-hosted an evening reception in honor of National Consumer Protection Week with Project GOAL, Consumer Action, Safe Kids Worldwide, and Amazon. Working across government, industry, and consumer advocacy, we celebrated the importance of protecting consumers.
Sally will be moderating a virtual panel at a March conference focused on HIPAA, the law that protects privacy of our health information. The summit will focus on consumer protection, anti-trust enforcement, and worker rights.
NCL joined with Consumer Federation of America and Sports Fans Coalition to launch the Ticket Buyer Bill of Rights. The goal of the initiative is to give policymakers a clear set of principles for crafting pro-consumer and pro-competition live event ticketing reform legislation.
The Child labor Coalition is cohosting the event with Accountability Research Center, Peacejam, and Satyarthi. Len Morris’s short film, “Butterfly, Butterfly,” explores the plight of child laborers in the United States and abroad and is an urgent call-to-action for policymakers.
NCL Vice President John Breyault testified before the Maryland House of Delegates in support of HB 795, a bill that would strengthen consumer protections against unfair and deceptive live event ticketing practices.
Sally will speak at the 25th International Generic and Biosimilar Medicines Association Annual in Orlando, FL.
Sally and Reid Maki attended the Fight Like Hell: The Testimony of Mother Jones movie in The Cinema at Eaton DC.
Reid Maki attended the Human Trafficking Legal Center and co-hosted a panel discussion on child forced labor in the United States. The panel discussed policy recommendations to prevent these crimes and to hold perpetrators accountable.
Sally and Robin Strongin, NCL’s Senior Director of Health Policy, will attend a conference on Protecting Treatment Choice: Perspectives from Patients, Providers, and Advocates.
Reid Maki, NCL’s Director of Child Labor Advocacy attended the Free the Slaves celebration. Last month, the Alliance 8.7 unanimously adopted an accountability framework for Pathfinder countries committed to achieving Target 8.7 of the United Nations Sustainable Development Goals.
John will be speaking on a panel about data breach notifications organized as part of the Identity Theft Resource Center and Better Identity Coalition’s Identity, Authentication, and the Road Ahead” conference.
Sally attended the Kelley Drye’s Government Relations & Public Policy Practice for the 18th annual Congressional Forum – A Look at the Legislative Agenda for 2023. This event provides clients and friends an opportunity to learn first-hand from federal legislators and leading policy makers about topics that will be relevant in the 118th Congress
Sally will participate in the American Telemedicine Association (ATA) Action Patient Voices for Telehealth Coalition Meeting that will provide perspectives on federal and state policies related to virtual care and discuss the activities to support the advancement of telehealth.
Sally receives a certificate of appreciation for NCL’s work on the consumer and worker protections subcommittee of the transition team for DC Attorney General Brian Schwalb.
VP of Fraud Policy & Telecommunications John Breyault will be one of the speakers at a panel discussion about the prevalence of fake online reviews, their impact on companies and consumers alike, and the steps policymakers can take to stop their spread.
Sally will join TikTok CEO Shou Chew for an update on Project Texas, the company’s plan to enhance efforts to protect data and secure platform integrity. The Flyer is in the link below.
Impact 100 DC is an all-volunteer women’s philanthropic community dedicated to improving lives in the Greater Washington, DC area by collectively funding transformational grants to local nonprofit organizations.
In celebration of Dr. Martin Luther King, Jr.’s birthday, Sally participated in the MLK parade in DC, where she ran into Chairman of the DC Council Phil Mendelson. Check out her photos in the link below.
Sally and the NCL team joined our friends from the Consumer Federation of America to celebrate CFA’s 50 years of work on behalf of consumer protection and safety and to pay tribute to some of the leading consumer advocates working to keep Americans safe, healthy, and free from predatory practices.
Sally is part of the transition team for incoming DC Attorney General Brian Schwalb’s office and the team is delivering a document with recommendations for priorities for the AG for his work on consumer protection, antitrust investigations, and worker rights and protections.
NCL is leading the charge for a comprehensive federal privacy statute. In her op-ed for The Hill publication, Sally explains why such protections are important and winnable.
John is one of the speakers at this November conference in Orlando.
Sally and John Breyault, NCL’s Vice President of Fraud Policy & Telecommunications, attended a Capitol Hill briefing to provide background information and an outline for congressional action to make the live ticketing marketplace more fair and transparent. John also served as a panelist.
Sally joined consumer colleagues and companies that work with consumers to advance good policies at a reception to celebrate the 51st anniversary of Consumer Action. At the event, Senator Ed Markey joined consumer advocates in accepting an award for his decades of outstanding leadership in both the House and Senate.
Sally joined a panel of international experts on the transformation of the labor market in Uzbekistan; a labor market that once forced children to leave school to work picking in cotton fields to one that now boasts a more fair, transparent, and worker-friendly cotton sector. Ten years ago NCL and our Child Labor Coalition were part of a protest at the Uzbekistan embassy calling for an end to that country’s treatment of children.
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
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
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
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
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
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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.”
/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.
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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.
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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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