Voices, Urgency, and Hope at the National Health Council Annual Meeting

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By Sally Greenberg, NCL CEO

Have you heard of Alpha-1 Disorder? I hadn’t either until I had a conversation with the Alpha-1 Disorder team that’s gathered in Ft. Lauderdale for the National Health Council Annual Meeting. I love coming to this gathering because of the energy and drive behind the diverse patient groups and companies working to develop treatments and cures. Lisa Bercu, our Senior Health Policy Director, and I are here talking with and learning from colleagues across the health care spectrum.

Back to Alpha 1 or Alpha-1 Antitrypsin Deficiency (AATD) it’s a genetic condition that can cause damage to the lungs and/or the liver and is often misdiagnosed as COPD. There is no cure for Alpha-1, but symptoms can be managed with treatment. The Foundation is here and exists to advocate for research, more effective treatments and cures, and benefits for patients with Alpha 1.

Tracy Garner from Easter Seals is describing what lies ahead for Medicaid patients whose benefits will be slashed, as called for in HR 1, the so-called “Big Beautiful Bill” that Congress passed in 2025. One in four people in the US identifies as having a disability. One-third of those receive Medicaid benefits. That will have a huge impact on these patients.

Tracy and her team are working with states and their over seventy affiliates to hold meetings with the Centers for Medicare & Medicaid Services and state Medicaid administrators.

Ashlie White’s with the American Orthotic and Prosthetic Association. Her patient base is made up of amputees, and her challenge is ensuring that they get the Medicaid coverage they need, as many of them are on the program. The slashing of Medicaid could be devastating to these patients.

Cheryl Wicks’ group, Mosaic, provides support to 5,000 people with disabilities, mental and behavioral needs, and autism. I asked her what she thought legally about Sheltered Workshops for people with disabilities, where they get to go to work but get paid subminimum wage. NCL has never thought those Sheltered Workshops were a good thing, as they take advantage of people with disabilities, having them work for dirt cheap wages on the theory that at least they are getting out of the house or home. She agreed and used a term I had never heard – Community Integrated Employment, which means people with developmental and intellectual disabilities have jobs like everyone else that pay the legal minimum wage and work out much better. They are at grocery stores or pharmacies, stocking shelves or doing other similar work. Walgreens is particularly outstanding as an employer of people in her community. Hear, hear!

I cannot possibly capture the impact and dedication I feel among these patient advocates and the companies that develop the drugs and cures to treat the conditions described above, and so many more.

FTC Forces Transparency Reforms on Express Scripts in Landmark Settlement

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Media Contact: Lisa McDonald, Vice President of Communications, 202-207-2829

Washington, DC – Today, the National Consumers League (NCL) applauds the Federal Trade Commission (FTC) for securing a landmark settlement with one of the nation’s largest pharmacy benefit managers (PBMs), Express Scripts, Inc., and its affiliated entities. The settlement requires Express Scripts to make significant changes to its business practices that will, among other things, increase transparency, base patients’ out-of-pocket expenses on the drug’s net cost rather than the artificially inflated list price, and increase fairness in community pharmacy reimbursement.

“For too long, pharmacy benefit managers have operated with little transparency, leaving patients and community pharmacies to bear the consequences,” said NCL’s CEO Sally Greenberg. “This settlement advances reforms NCL has long championed, greater transparency, accountability, and fairer practices that put patients first, and we appreciate the FTC’s leadership in moving this work forward.”

The FTC’s action addresses longstanding concerns about PBM practices that have contributed to inflated drug prices and higher patient costs.  These actions are expected to lower patients’ out-of-pocket costs for prescription drugs like insulin by up to $7 billion over the next decade and deliver millions of dollars in new annual revenue to community pharmacies.

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About the National Consumers League (NCL)

The National Consumers League, founded in 1899, is America’s pioneer consumer organization. Our mission is to protect and promote social and economic justice for consumers and workers in the United States and abroad. For more information, visit www.nclnet.org.

Bipartisan PBM Reforms Mark Progress Toward Lower Drug Costs for Patients 

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Media Contact: Lisa McDonald, Vice President of Communications, 202-207-2829 

Washington, DC – Today, the National Consumers League applauds the passage of the bipartisan Consolidated Appropriations Act of 2026 (CAA), which includes meaningful reforms to hold pharmacy benefit managers (PBMs) accountable and bring greater transparency to the prescription drug marketplace. These reforms are an important step toward ensuring that patients, employers, and plan sponsors benefit from lower drug costs—not entities who profit from opaque pricing practices. 

“PBMs often work behind closed doors, raising costs for patients while diverting savings from those who need them most,” said Sally Greenberg, CEO of the National Consumers League. “By increasing transparency and prioritizing patients Congress has taken a positive step toward a fairer, more accountable prescription drug marketplace.”  

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About the National Consumers League (NCL)      

The National Consumers League, founded in 1899, is America’s pioneer consumer organization. Our mission is to protect and promote social and economic justice for consumers and workers in the United States and abroad. For more information, visit www.nclnet.org.   

My 11-Year-Old Got the HPV Vaccine — Here’s Why It Matters for Cancer Prevention

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By Lisa Bercu, NCL Senior Director of Health Policy

Last week, my 11-year-old received her first HPV (human papillomavirus) vaccine. Like most kids, my daughter doesn’t love getting shots, but I talked it up for months in advance. I explained the HPV vaccine helps prevent cancer, which could otherwise rear its ugly head years or even decades down the road. And, that she may be spared many of the health risks and worries that so many women of my generation grew up with, including dealing with abnormal pap smears and invasive follow-up procedures. With that in mind (and knowing she would be rewarded with ice cream later!), she bravely rolled up her sleeve and got her vaccine.

That moment came against the backdrop of a significant and troubling policy shift. Earlier this month, the Centers for Disease Control and Prevention (CDC), under Secretary Kennedy’s leadership, made several changes to the childhood vaccine schedule. These changes were not driven by new scientific evidence. Instead, they reflect a departure from decades of established research, elevating ideology and misinformation in ways that will increase confusion for families, disrupt access to routine immunizations that have been given to children for years, and reduce public confidence in vaccines that are proven to be safe and effective.

These changes include altering the recommendations for the HPV vaccine. The CDC is now recommending a single dose instead of the two doses previously recommended. While there is growing evidence that one dose may be sufficient to protect people against HPV-related cancers, there isn’t sufficient evidence to support that change yet, and the American Academy of Pediatrics and American College of Obstetricians and Gynecologists continue to recommend the full series of doses for adolescents.

HPV Vaccine = Cancer Prevention

During Cervical Cancer Awareness Month, it’s worth underscoring a critical fact: HPV vaccination is cancer prevention.

HPV is extremely common, with more than 200 strains, and it is transmitted through intimate skin-to-skin contact (e.g., sex). Most people will be infected with at least one HPV type at some point in their lives, and certain types can lead to cancer. The HPV vaccine protects against the types that cause the vast majority of cervical cancers, as well as other cancers such as throat, anal, vaginal, vulvar, and some head and neck cancers. According to the American Cancer Society, the HPV vaccine, when given at the recommended ages, can prevent more than 90% of HPV-related cancers.

The HPV vaccine can be given to children starting at age 9, with routine vaccination at 11 or 12. The recommended dosing schedule is as follows:

    • 9-14 years: 2-dose series across a 6–12-month period
    • 15 years or older: 3-dose series across a 6-month period

While the HPV vaccine is typically given to preteens, adults up to age 45 can get it. Vaccinating at the recommended age not only strengthens immune response but also ensures protection before potential exposure to HPV and before cancer can begin to develop. Importantly, this guidance applies to both boys and girls. HPV can cause cancer in men, as well including anal, penile, throat, and head and neck cancers. The vaccine works. According to the CDC, among young adult women, infections with HPV types that cause most HPV cancers and genital warts have dropped 81%. And among vaccinated women, the percentage of cervical pre-cancers caused by the HPV types most often linked to cervical cancer has dropped by 40%.

Unfortunately, following the changes to the CDC’s recommendations, insurance coverage of the HPV vaccine is in flux. Most private insurers are expected to continue covering all doses of the vaccine through 2026 at no cost to patients, but coverage of the second and third doses after 2026 remains uncertain. Under the Vaccines for Children program, coverage of the first dose is expected to continue, while coverage of second and third doses is currently unclear.

What You Can Do

You can help ensure children get the protection they need:

    • Talk with your child’s healthcare provider about the HPV vaccine at the recommended ages. If your child is eligible for the HPV vaccine now, talk to your healthcare provider as soon as possible, as insurance coverage may change.
    • Review and share trusted information from organizations like the American Academy of Pediatrics.
    • Advocate for policies that uphold science-based vaccine recommendations.

Weakened Vaccine Guidance Threatens Decades of Public Health Progress 

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Media Contact: Lisa McDonald, Vice President of Communications, 202-207-2829 

Washington, DC – The National Consumers League strongly opposes the decision to reduce the CDC’s recommended childhood immunization schedule without scientific justification or public review. 

“By cutting recommended childhood vaccines without evidence-based rationale or expert input, this action recklessly discards decades of peer-reviewed research demonstrating vaccines are safe, effective, and essential to preventing serious childhood illness,” said NCL CEO Sally Greenberg. 

“The U.S. faces distinct disease risks and health system challenges that demand a strong immunization schedule,” Greenberg continued. “Weakening these recommendations will further erode trust in the CDC, lower vaccination rates, and lead to avoidable outbreaks that expose children to preventable disease.” 

Childhood vaccines have prevented millions of cases of disease, tens of thousands of deaths, and billions in health care costs in the United States. NCL urges federal health officials to restore science-driven, transparent decision-making and reaffirm the CDC’s commitment to protecting children and families. 

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About the National Consumers League (NCL) 

The National Consumers League, founded in 1899, is America’s pioneer consumer organization. Our mission is to protect and promote social and economic justice for consumers and workers in the United States and abroad. For more information, visit www.nclnet.org. 

Public Health Undermined: NCL Slams ACIP’s Dangerous Vaccine Reversal

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Media Contact: Lisa McDonald, Vice President of Communications, 202-207-2829  

Washington, DC – The National Consumers League (NCL) is deeply concerned by today’s vote from the CDC’s Advisory Committee on Immunization Practices (ACIP) to eliminate the long-standing recommendation that all newborns receive a hepatitis B vaccine at birth.   

“We all want to protect our children.  But this reversal disregards decades of scientific evidence, proven public health outcomes, and the consensus of the nation’s leading medical experts,” said NCL’s Senior Director of Health Policy Lisa Bercu. “Rolling back this recommendation puts infants at unnecessary and avoidable risk. As several ACIP members warned, the consequences of today’s decision will be measured in preventable childhood infections and puts them at long– term risk of liver cancer.”  

NCL is particularly troubled that the vote appears to be influenced by fringe skepticism rather than by evidence-based medicine. Secretary of Health and Human Services, Robert F. Kennedy Jr. has long promoted scientifically discredited anti-vaccine claims and has financially benefited from organizations that amplify this misinformation, raising serious concerns about his credibility and motives on public health issues. The bottom line is consumers deserve guidance grounded in science—not ideology.  

“This move also risks sowing confusion among parents and undermining confidence in a vaccine that has been proven safe, effective, and vital for more than three decades,” Bercu continued. “At a time when the nation is already combating outbreaks of preventable diseases, weakening a cornerstone of childhood immunization sends exactly the wrong message.” 

NCL urges the acting CDC Director to carefully weigh this decision, reaffirm the agency’s principles of relying on scientific evidence, and maintain the universal recommendation that has protected generations of children.  

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About the National Consumers League (NCL)       

The National Consumers League, founded in 1899, is America’s pioneer consumer organization. Our mission is to protect and promote social and economic justice for consumers and workers in the United States and abroad. For more information, visit www.nclnet.org.   

Guest Blog: Lives on the Line: Dialysis Patients Fight for Innovative Medicine

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By Katie Riley, Vice President of Communications, Alliance for Aging Research

For many older Americans with kidney failure, life isn’t just about surviving the next dialysis session, it is about protecting their hearts, keeping their transplant hope alive, and preserving dignity and independence.

When kidneys stop working and patients rely on dialysis, phosphorus levels build up. That small-but-dangerous imbalance massively raises the risk of cardiovascular events and can threaten someone’s eligibility for a transplant.

Enter a lifesaving tool: oral Phosphate Lowering Therapies (PLTs). These medications help keep phosphorus under control and are especially important for older adults, including those on fixed incomes or using nursing-home care. But a federal policy change at the start of 2025 cut off easy access. Under the new rule, oral-only PLTs were moved into the ESRD payment bundle meaning many patients outside dialysis centers or in nursing homes have to jump through hoops to get access to them.

That policy shift is more than inconvenient…it’s harmful. Reports reveal that aging dialysis patients in nursing homes are being denied coverage altogether, resulting in higher phosphorus levels, greater risk of heart problems, and shrinking transplant chances.

Patients across the country have been impacted by the bundle and are sharing their concerns with policymakers and the public. Here are a few of their stories:

CKD care is not always straightforward, and encompassing every patient into a single fixed-payment bundle system takes away the key patient and provider relationship, where decisions are made to save lives, not time.

Ensuring that older adults can get the treatments they need to manage chronic conditions like kidney failure demands action.

The solution to this problem is simple. Medicare must reverse the decision to include oral-only Phosphate Lowering Therapies into the ESRD Bundle and restore coverage access to Medicare Part D. This change would immediately expand treatment options, reduce avoidable harm, and help keep thousands of older Americans eligible for transplant.

But the call for action is not just coming from advocates or clinicians, it is coming directly from patients. Their experiences are clear, consistent, and urgent. They are telling us what is at stake: their health, their independence, and their chance at a better life. Policymakers must listen.

Seniors and kidney patients deserve policies shaped by the realities they live every day not by technical payment decisions that ignore those realities. We urge the administration to return to a patient-centered Medicare approach that respects individual needs and ensures that older adults can age with health, dignity, and hope.

Consumer Group Applauds FDA’s Action to Update Hormone Replacement Therapy Warnings 

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Media Contact: Lisa McDonald, Vice President of Communications, 202-207-2829  

Washington, DC — The National Consumers League (NCL)’ s CEO attended the FDA announcement today that the agency will no longer require the “black box warning” on local estrogen products.  NCL applauds the decision, which follows science and removes warnings that don’t follow the medical data for menopausal women and related conditions.  

“For too long, outdated and misleading warnings have discouraged women from using very safe and effective local estrogen medications to relieve the often-debilitating symptoms of menopause,” said Sally Greenberg, CEO of the National Consumers League. “We have been asking for the removal of the black box warning for decades. The FDA’s action reflects current evidence and acknowledges the important role these local estrogen therapies can play in improving women’s health and quality of life.”   

NCL is particularly pleased to see the removal of boxed warnings for local vaginal estrogen products — a step that will expand options for managing menopause-related conditions. At the same time, we urge consumers to be vigilant, seek the advice of their health care providers and look for transparency to ensure that they receive clear, evidence-based information about all treatment risks and benefits.  

“Women deserve science-driven policies and access to care that reflects the best available research. The Administration listened to female patients, their doctors, providers, and women’s health researchers and for that we are grateful,” Greenberg concluded. 

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About the National Consumers League (NCL)      

The National Consumers League, founded in 1899, is America’s pioneer consumer organization. Our mission is to protect and promote social and economic justice for consumers and workers in the United States and abroad. For more information, visit www.nclnet.org.   

NCL Urges FDA to Reject Misleading Petition on Acetaminophen Labeling

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Warns against politicizing drug safety decisions and spreading misinformation to pregnant women 

Media Contact: Lisa McDonald, Vice President of Communications, 202-207-2829 

Washington, DC – The National Consumers League (NCL) has submitted comments urging the U.S. Food and Drug Administration (FDA) to reject a petition from the Informed Consent Action Network (ICAN) that calls for new warnings on over-the-counter acetaminophen products. NCL warns that ICAN’s proposed labeling changes are not supported by credible science and could needlessly alarm pregnant women. 

“Decades of high-quality research show no causal link between acetaminophen use in pregnancy and neurodevelopmental disorders such as autism,” said NCL CEO Sally Greenberg. “The science is clear: acetaminophen remains the safest and most effective option for managing fever or pain during pregnancy. Overstating unproven risks will only confuse and endanger women and their babies.” 

“Inserting politically motivated warnings into drug labeling would erode public trust in the FDA and risk discouraging appropriate treatment for pregnant women, potentially leading to greater harm,” Greenberg added. “Pregnant women deserve clear, evidence-based information to protect their health and their children’s health.”  

NCL notes that medical experts, including the American College of Obstetricians and Gynecologists, the Society for Maternal-Fetal Medicine, and the American Academy of Pediatrics, have all reaffirmed acetaminophen’s safety when used as directed. In addition, FDA’s own notice to physicians issued in September states that “a causal relationship has not been established.” 

NCL’s full comments are available here. 

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About the National Consumers League (NCL)      

The National Consumers League, founded in 1899, is America’s pioneer consumer organization. Our mission is to protect and promote social and economic justice for consumers and workers in the United States and abroad. For more information, visit www.nclnet.org.   

NCL Responds to FDA Action on Fluoride Supplements: Access Still in Question

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Media Contact: Lisa McDonald, Vice President of Communications, 202-207-2829  

Washington, DC – Last week, the Food and Drug Administration (FDA) announced actions to restrict the sale of unapproved ingestible fluoride prescription drug products for children. The agency has notified four companies of its intent to take enforcement action against those marketing unapproved fluoride-containing drugs labeled for use in children under age three or for older children at low or moderate risk for tooth decay.  

“Fluoride remains one of the most effective and affordable tools we have to protect children’s teeth,” said NCL CEO Sally Greenberg. “While we are relieved that this is not a ban on fluoride supplements, the FDA’s actions highlight an ongoing concern about access to safe and effective fluoride sources for children. Millions of families, especially those without access to fluoridated water, depend on fluoride supplements prescribed by their healthcare providers to prevent painful and costly cavities.  There is scant evidence that fluoride supplements harm children, as the FDA alleges. I myself took them when I was pregnant, and he took them as an infant, and millions of other children enjoy great dental health with no neurological effects.”  

“Preventing cavities is always better than treating them. Without prevention, families face unaffordable dental bills, and children face serious long-term health consequences,” Greenberg concluded. “It is imperative not to deprive children without access to fluoridated water of other safe sources of fluoride.”  

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About the National Consumers League (NCL)       

The National Consumers League, founded in 1899, is America’s pioneer consumer organization. Our mission is to protect and promote social and economic justice for consumers and workers in the United States and abroad. For more information, visit www.nclnet.org.