January 6, 2025: On this episode of NCL’s “We Can Do this” podcast, National Consumers League CEO Sally Greenberg speaks with Amy Hinojosa, President and CEO of Mana, a National Latina Organization, and Dr. Ge Bai, an expert on health care accounting, finance, and policy at Johns Hopkins University, regarding a shocking lack of transparency for a program that has more than doubled in cost reaching more than $120 Billion in 2022.
By Sam Sears, Health Policy Associate, National Consumers League
The National Consumers League (NCL) recently published a new issue brief focused on hospital’s medical debt practices. With over 100 million Americans grappling with medical debt, and 1 in 7 of them reporting to KFF Health News that they’ve been denied care, it is prudent to evaluate these anti-consumer hospital policies.
The analysis, which was completed by Magnolia Market Access, found that 340B hospitals are significantly more aggressive with their medical debt policies – 340B hospitals are twice as likely to deny or defer chare and also significantly more likely to take legal action against a patient. Additionally, our analysis found that for-profit hospitals are significantly less aggressive in their practices against patients with medical debt than nonprofit or government hospitals, and that screening for financial assistance does not resolve medical debt issues.
Medical debt is unpredictable and can have long lasting consequences. Nearly 50% of Americans struggling with medical debt have it reported to their credit report, and over 40 million people owe nearly $88 billion that has been sent to collections. The Biden Administration has taken action to combat and address medical debt, which you can read more about here on our blog. However, there are additional actions that policymakers may take.
NCL has, and continues to fight to protect consumers from excessive troubles due to medical debt, including working with policymakers to combat anti-consumer debt collection policies hospitals continue to practice. The findings from the analysis conducted in this issue brief further highlight the need for 340B Drug Pricing Program reform, to ensure the savings that hospitals receive are reinvested in ways that continue to benefit consumers and patients.
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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 nclnet.org.
By Nancy Glick, Director of Food and Nutrition Policy
Today, over 100 million Americans, or 40.3 percent of adults, are living with obesity. This makes obesity the nation’s most widespread chronic condition, impacting many more people than diabetes, heart disease, stroke, certain cancers, chronic lung disease, and chronic kidney disease.
Yet, the sad fact is obesity still gets short shrift from health professionals and policymakers, even though it worsens the outcomes of more than 230 chronic diseases, is responsible for an estimated 400,000 premature deaths annually, and costs society an estimated $1.72 trillion a year. As a consequence, only 10 percent of people with obesity get help from medical professionals, meaning the disease remains largely undiagnosed and undertreated. This is occurring even though leading medical societies, including the American Medical Association (AMA), agree that obesity is a serious disease requiring comprehensive care.
It doesn’t have to be this way, which is why the National Consumers League worked with the National Council on Aging and leading obesity experts to issue the first Obesity Bill of Rights for the nation, which establishes eight essential rights so people with obesity will be screened, diagnosed, counseled, and treated according to medical guidelines. The goal is to put an end to the prejudice, incorrect beliefs about obesity, misinformation about treatment options, and outdated government policies that keep Americans from getting the same standard of care as those with other chronic diseases.
It will take time for the Obesity Bill of Rights to be incorporated into clinical practice, but specific rights already have significance. This is the case with new “blockbuster” injectable medicines called GLP-1 (glucagon-like peptide-1 receptor) agonists that work by mimicking a hormone produced in the small intestine to reduce appetite and slow digestion. Considered a game-changer in chronic obesity treatment, GLP-1s can help people lose up to 20 percent of their weight in 26 months. Thus, The Right to Coverage for Treatment reinforces calls from obesity specialists and medical societies for an end to exclusionary coverage policies by insurers and government agencies, so GLP-1 medications are a treatment option for adults at higher risk for living with weight-related diseases.
The major challenge has been the Medicare program, which excludes coverage for weight loss drugs due to past safety concerns that no longer exist today. But this could change. On November 26, 2024 the Centers for Medicare and Medicaid Services (CMS) published a proposed rule to allow seniors on Medicare and adults with Medicaid to have coverage for GLP-1s, thereby removing one of the biggest obstacles impeding access to quality obesity care in the country. If CMS’s proposal is finalized, the right to coverage for obesity treatment will become a reality for 7.4 million Americans – a good start in ensuring that people with obesity receive individualized quality care.
However, there is a lot of misinformation about GLP-1 medications, so The Right to Accurate, Clear, Trusted, and Accessible Information is also important, especially because disinformation is raising concerns among health professionals and the public. To date, the Food and Drug Administration (FDA) has approved four GLP-1 drugs based on evidence from large-scale clinical trials that these medicines are safe and achieve substantial weight loss. Yet, critics of these drugs assert these compounds cause severe side effects in all users, claim GLP-1 medications cause depression and suicidal thoughts, and allege the European Union (EU) is investigating this matter.
Responding to these allegations, experts in obesity treatment have assembled the facts from scientific journal articles and government reports. In furtherance of the right of the public to have this information, here is a summary of these findings:
The Rand Corporation coined the term “truth decay” to call attention to the blurring of the line between opinion and fact. It is important that “truth decay” not become a new obstacle to Americans receiving quality obesity care.
November 15, 2024
Media contact: National Consumers League – Lisa McDonald, lisam@nclnet.org, 202-207-2829
WASHINGTON, DC– President-elect Trump’s decision to nominate Robert F. Kennedy Jr. as Secretary of Health and Human Services (HHS) is a grave error, prioritizing conspiracy theories over evidence based science and medical research that is a foundation of our public health system.
The nomination is a staggering blow to the integrity of our nation’s healthcare delivery system. Kennedy, one of the loudest anti-vaccine voices during the COVID-19 pandemic, has been vocal about his theory that vaccines cause autism, a theory unsubstantiated by medical research. Vaccines are one of the most significant achievements in modern medicine, virtually eradicating childhood diseases such as smallpox and polio, saving millions of lives, and ensuring that our children grow up healthy and safe. The World Health Organization has repeatedly affirmed that vaccines are a cornerstone of public health, drastically reducing child mortality and preventing devastating diseases.
Parents across the nation, regardless of their political affiliations, share the same goal: to see their children grow up healthy and strong. By advancing vaccine skepticism, Mr. Kennedy jeopardizes not only children’s health but also public confidence in science, medicine, and the agencies tasked with protecting public safety—a foundation that has taken over a century to build.
If he is confirmed for the position, Mr. Kennedy, an environmental lawyer by training with no experience in the health or medical community, would oversee critical agencies such as the Centers for Disease Control and Prevention (CDC), the Food and Drug Administration (FDA), and the National Institutes of Health (NIH). His anti-science stance raises serious concerns about his ability to lead a department responsible for infectious disease control, food and drug safety, Medicare and Medicaid policy, and life-saving medical research.
In addition, Mr. Kennedy has proposed drastic changes to the FDA, including loosening regulations on raw milk and eliminating the user fees that fund the oversight of drugs and medical devices. These fees are essential for ensuring timely reviews and approvals for medical devices and drugs. Eliminating them delay the availability of new medical innovations and treatments that serve public health.
This is not the first time that Trump has recommended an unqualified individual for Secretary of Health and Human Services. In 2016, President Trump selected Tom Price, whose tenure ended after just three months due to ethical issues and misuse of taxpayer funds.
The Department of Health and Humans Services deserves a leader committed to advancing science, protecting public health, and upholding the integrity of the nation’s healthcare systems. With this nomination, President-elect Trump is proposing putting the fox in the henhouse, essentially putting our public health under an unsuitable leader who would dismantle the very programs that protect our health and the nation’s food supply.
The National Consumers League calls on the U.S. Senate to reject this nomination. Furthermore, we urge President-elect Trump to withdraw this appointment and select a candidate who will champion science, uphold public trust, and protect the health of the nation.
By Sally Greenberg, Chief Executive Officer, National Consumers League
Now that we are a mere 15 days away from the election, all attention is unsurprisingly laser-focused on the outcome of the general election. Surprisingly, however, both candidates have made it clear that one of the leading healthcare issues on the ballot is the future of the Affordable Care Act (ACA). Ten years after its enactment, the ACA has become intertwined with the very fabric of the healthcare landscape in the US and thus requires federal agencies to regularly revisit the statutes to ensure it is fulfilling its original intent.
Now that the current administration has released proposed rulemaking on core provisions of the ACA, it has become more important than ever to add statutes to address a loophole in the essential health benefits (EHB) provision of the ACA. There is no better time for three federal agencies – the Department of Treasury, Department of Labor, and Department of Health and Human Services – to change language in the ACA that is constantly exploited by profit-seeking insurers, producing severe access and affordability barriers for patients and undermining the original intent of the ACA.
The loophole goes something like this: Essential health benefits are a central pillar of the ACA and provide affordability protections to Americans by ensuring that everyone in the individual and small group health insurance markets has access to coverage that actually covers the services they need. These essential health benefits fall into ten categories, one of which is prescription drugs.
If a patient pays out-of-pocket for their prescription (an essential health benefit), that dollar amount counts towards their out-of-pocket maximum. Once they hit the out-of-pocket cost maximum set by the ACA, insurance kicks in and covers the remainder of their out-of-pocket costs. However, insurers and pharmacy benefit managers (PBMs) are designating some specialty prescriptions to be “non-essential” – regardless of whether a patient needs them to stay alive. Once labeled “non-essential,” the patient is no longer protected by the out-of-pocket maximum set by the ACA.
What does this look like in practice? A patient may spend money on lifesaving medications that don’t count toward their out-of-pocket maximum. All year, a patient could pay out-of-pocket for prescriptions but never reach their maximum and see their insurance kick in. This saves a few bucks for insurers and PBMs but imposes massive financial burdens for patients who would otherwise be protected under the ACA. The EHB loophole forces patients to pay more out-of-pocket, a situation that circumvents the original intent of the law — which, as a reminder, is to keep drug costs affordable for consumers.
How can we close this loophole? The Department of Treasury, Department of Labor, and Department of Health and Human Services could act now. The tri-agencies can integrate language to close the EHB loophole into the Notice of Benefit and Payment Parameters (NBPP) to clarify that any service covered by a health plan is defined as an EHB.
Both of the frontrunners of the 2024 presidential election have signaled their intent to find solutions that lower prescription drug costs for Americans. While the country braces for the ripple effects of a new administration regardless of the results, regulators should close the EHB loophole to protect consumer access to treatments in line with the original intent of the ACA – affordable and accessible care for patients.
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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.
September 20, 2024
Media contact: National Consumers League – Melody Merin, melodym@nclnet.org, 202-207-2831
WASHINGTON, DC – The National Consumers League (NCL), America’s pioneering consumer advocacy organization, today applauds the Federal Trade Commission (FTC) for bringing action against the three largest prescription drug benefit managers (PBMs) and affiliated group purchasing organizations (GPOs). The FTC’s administrative complaint states that PBMs have engaged in anticompetitive and unfair rebate practices, inflating the list prices of insulin, lining their pockets, and transferring the costs to patients.
The following statement is attributable to NCL’s Chief Executive Officer Sally Greenberg:
“We applaud the FTC for its continued actions and investigation into PBMs. This latest action reinforces the role PBMs play in creating consumers high out-of-pocket costs of medicines consumers face. Caremark Rx, Express Scripts, and OptumRX administer four-fifths of all prescriptions within the states, and prioritizing their profits over the patients’ wellbeing directly impact why 25 percent of insulin patients are unable to afford their medication.”
The FTC’s press release about the administrative complaint can be read 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.
By Nancy Glick, Director of Food and Nutrition Policy
Americans need and now have an Obesity Bill of Rights for a reason: People with obesity do not receive the same concern, level of attention, and quality care as those with any other serious chronic disease.
Put into real-life terms: Though the adult obesity rate now exceeds 42 percent – the highest level ever recorded – obesity is still viewed as a problem of lack of willpower; too many health professionals act in discriminatory ways based on people’s size; and those seeking obesity care often face exclusions in insurance plans, restrictive practices that delay or deny treatment, or are not factored into decisions regarding medicine use.
The consequence is that only 10 percent of people with obesity get help from medical professionals and only 2 percent of those eligible for treatment with Food and Drug Administration (FDA)-approved anti-obesity medicines (AOMs) have been prescribed these drugs, meaning the disease remains undiagnosed and undertreated. Compounding the impact, untreated obesity worsens the outcomes of more than 230 other chronic diseases, which is why obesity is responsible for as many as 400,000 Americans dying from obesity annually and costs the nation $1.72 trillion a year in direct and indirect health expenditures – more than what Social Security paid in retirement benefits in 2022.
It does not have to be this way.
And this is where the Obesity Bill of Rights enters the picture. Developed by the National Consumers League (NCL) and the National Council on Aging, in consultation with leading obesity specialists, the bill of rights establishes eight essential rights with the core requirements so adults will receive the same person-centered, quality care for obesity as those with other chronic conditions. As such, the bill of rights serves as a blueprint for necessary changes in medical practice and government policy, starting with actions that can happen now.
One immediate action item is pressing Congress to pass the Treat and Reduce Obesity Act (TROA), an important legislation that will allow more seniors to be treated with FDA-approved anti-obesity medications under the Medicare program. This matter is a high priority because obesity rates have nearly doubled among older adults to include two in every five Americans ages 65 and older.
Another priority is ensuring that health professionals have the prescribing information to effectively treat people with obesity when they are taking drugs for other conditions, such as depression, schizophrenia, infections, and cancer. The simple fact is that certain drugs work differently in people with obesity and the consequences can be underdosing, a delay in response time, or the drug remaining in the body too long, potentially causing side effects. For example, studies show the drug brexpiprazole (Rexulti®), which treats depression and schizophrenia, takes significantly longer to reach effective levels in people with obesity – and some patients never reach these levels. Fortunately, the same research provides an improved dosing regimen so all patients with obesity can achieve efficacy.
A different challenge involves drugs like posaconazole (Noxafil®), an antifungal often prescribed by oncologists to prevent infections. Two separate clinical trials show that obesity significantly increases posaconazole’s “half-life” – a term reflecting the amount of time it takes to rid the drug from the body. Half-life is an issue with posaconazole because many oncology medications must be delayed until the drug is out of the body’s system. Thus, if the package insert does not flag this matter when patients have obesity, doctors prescribing posaconazole may not know about the increase in half-life and start using oncology medicines too soon.
These problems are not rare, but drug labels to guide safe and effective prescribing are dismissing people with obesity. For this reason, the Obesity Bill of Rights includes language to make accurate prescribing a requirement for receiving person-centered obesity care. Moreover, because increasing research validates the consequences of “flying blind” when drugs behave differently in the bodies of people with obesity, the obesity community is raising alarm bells, supported by a position statement from the American College of Clinical Pharmacology (ACCP), which urges FDA to close gaps in the testing and approval process for new drugs intended for use by people with obesity.
However, because more immediate action is needed, five leading obesity organizations – American Society for Metabolic and Bariatric Surgery, the Obesity Action Coalition, the Obesity Medicine Association, the STOP Obesity Alliance, and The Obesity Society – issued a joint statement calling on drug manufacturers to update their labeling immediately to provide correct usage instructions for people with obesity when there should be a difference in dosing.
NCL stands with the obesity community in calling for this sensible action and urges FDA to be a catalyst in ensuring that health professionals have the prescribing information needed for their patients with obesity to take important therapeutics safely and achieve the maximum benefit. For more information, visit right2obesitycare.org.
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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.
June 25, 2024
Media contact: National Consumers League – Melody Merin, melodym@nclnet.org, 202-207-2831
WASHINGTON, DC – Last week, NCL submitted comments to the Centers of Disease Control and Prevention (CDC) Advisory Committee on Immunization Practices (ACIP) in response to their request for public comments in advance of the ACIP meeting being held June 26 – 28, 2024 in Atlanta, Georgia. During this meeting, ACIP will be discussing several vaccines, including but not limited to COVID-19, flu and RSV vaccines. The committee will also be voting on recommendations many of the vaccines discussed, including COVID, flu and RSV for adults.
In the comments, NCL urges that the Committee do all in its power to ensure that both flu and COVID vaccines are made available at the same time, thus allowing patients to receive both vaccinations at the same appointment. NCL also asks that ACIP review the current recommendations for the RSV vaccine, specifically the shared clinical decision-making requirement. To read NCL’s comments in full, click here.
The Advisory Committee on Immunization Practices (ACIP), which is composed of fifteen medical and public health experts and is charged with advising the CDC Director on the use of vaccines and the adult and childhood immunization schedules. ACIP meets regularly to review data, studies and proposals for vaccines, and as needed for emergency cases. Meetings are open to the public, and since COVID they have been streamed online. The June 26 – 28 meeting will be streamed online, via YouTube and is available to watch 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 nclnet.org.
May 15, 2024
Media contact: National Consumers League – Melody Merin, melodym@nclnet.org, 202-207-2831
Washington, DC – Last week, Senate Democrats reintroduced legislation to revamp federal cannabis policy. The Cannabis Administration and Opportunity Act aims to legalize cannabis at the federal level, create a new regulatory framework for cannabis, expand research into cannabis’ potential and risks, and more. The National Consumers League (NCL), the nation’s oldest consumer advocacy organization, has been actively monitoring the growing threats to consumer safety as the market for untested, unapproved cannabis products has exploded. NCL Chief Executive Officer, Sally Greenberg, released the following statement:
“We are grateful to Senators Schumer, Wyden, and Booker for their ongoing leadership in this space and for acknowledging the critical role of FDA in helping to protect public health. As cannabis products have grown in popularity – and most recently, high THC products have perpetuated the market – it is increasingly important that, if cannabis is legalized, our federal policies and regulations are science-based and prioritize public health. We know that cannabis manufacturers often make misleading or even false claims about their products ability to mitigate or even cure various health issues and consequently our leaders must help consumers better navigate this marketplace across the U.S. FDA is best positioned to achieve that outcome. A new report reiterates the need to ensure that FDA has sufficient regulatory tools and resources to mitigate public health risks and that more research be done to better understand the benefits, risks, drug interactions, etc. of cannabis products.”
Learn more about the cannabis consumer market and the path to safe cannabis at cannabiswatch.org.
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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 nclnet.org.
March 14, 2024
Media contact: National Consumers League – Melody Merin, melodym@nclnet.org, 202-207-2831
Washington, DC – The National Consumers League (NCL) today released a statement following Senators Ron Wyden (D-OR) and Mike Crapo (R-ID) recent press conference announcing their push to include bipartisan PBM reforms in the broader funding package.
The following statement is attributable to NCL Chief Executive Officer, Sally Greenberg:
“For far too long now, PBMs have been taking advantage of our drug pricing system, finding ways to increase their profits without delivering value to consumers. Now, after years of investigations, pharmacy closures and high out-of-pocket costs, our leaders are doing something about it. By disconnecting Medicare prescription drug costs from PBM profits, this legislation will address one of the many ways PBMs use the system to their financial advantage. Congress has a huge opportunity to help seniors better afford and access the medications they need. We urge Congress to get this done without delay.”
Learn more about NCL’s work to address the PBM problem 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 nclnet.org.
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.
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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.
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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.
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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.
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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.