Sally Greenberg: Fluoridated water is essential for public health, not a danger

/in , , , /by

Sally Greenberg: Fluoridated Water is Essential for Public Health, Not a Danger

Media contact: National Consumers League – Lisa McDonald, lisam@nclnet.org, 202-207-2829

Washington, DC— In response to recent media coverage about Robert F. Kennedy Jr. and Florida Surgeon General Joseph A. Ladapo campaigning against water fluoridation, Sally Greenberg, CEO of the National Consumers League (NCL), issued the following statement:

“Robert F. Kennedy Jr.’s statements on fluoride could jeopardize a proven public health measure. Consumers are best served by reliable, evidence-based health information, not alarmist misinformation.”

The comments made by Kennedy and Ladapo echo similar claims from the 1960s, when groups like the John Birch Society suggested that fluoridation of drinking water was a “communist plot.” Today’s anti-fluoride activists point to a 2019 Canadian study that found that pregnant mothers exposed to higher fluoride levels during pregnancy, gave birth to baby boys with slightly lower IQ’s, as measured at ages 3-4. In this study, mothers were asked to self-recall beverage consumption per day and did not take into account the children’s fluoride exposure in early childhood.

The Center for Disease Control and Prevention (CDC) calls fluoridated drinking water one of the most successful public health interventions in U.S. history, with its origins dating back to 1945 in Grand Rapids, Michigan. Since then, water fluoridation has been proven to significantly reduce rates of tooth decay, especially in economically disadvantaged and vulnerable populations. The CDC estimates that fluoridated drinking water reduces tooth decay by approximately 25% in children and adults. Health authorities, including the American Dental Association and World Health Organization, affirm that fluoride is safe at the levels currently used in the U.S.

“Fluoridated water is a vital measure to protect public health and reduce health disparities in dental care,” says Greenberg. Recent examples of removing fluoride from water, such as Calgary, Canada (2011) and Juneau, Alaska (2007), resulted in an explosion of dental decay. In both cities, the absence of fluoride in the drinking water corresponded with an increase in cavities and dental surgeries, particularly among children. For more information, visit CDC’s resources on fluoride.

###

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.

Nancy Glick

The Obesity Bill of Rights: Priorities for government action

/in , , , , , , , , , , , , /by

Nancy GlickBy 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.

###

 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.

PBMs are driving the increase in out-of-pocket healthcare costs for consumers, says NCL

/in , , , , , , , , , , /by

July 23, 2024

Media contact: National Consumers League – Melody Merin, melodym@nclnet.org, 202-207-2831

WASHINGTON, DC – The National Consumers League (NCL) today submitted a letter to both the Republican and Democratic chairs of the House Committee on Oversight and Accountability expressing concerns about pharmacy benefit managers (PBMs) driving the increase in out-of-pocket healthcare costs for American consumers. The letter was submitted just as the committee was conducting a hearing with top executives from Express Scripts, CVS Caremark, and Optum Rx.

The following statement is attributable to NCL’s Chief Executive Officer Sally Greenberg:

“We are concerned that these anti-consumer practices are putting the profits of insurance companies and their PBMs before patients, local pharmacies, employers, and state governments. Congress has an opportunity to review these corporate practices and work to ensure a reduced market power, thus minimizing the incentives for PBMs to steer patients towards higher-priced medicines, claim higher and higher rebates to fatten their bottom line, and ultimately driving independent pharmacies out of business.”

The full letter can be accessed here.

###

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.

Nancy Glick

It’s time to care about obesity care

/in , , , , , , , , , , /by

Nancy GlickBy Nancy Glick, Director of Food and Nutrition Policy

Every year, the calendar is full of national health observances – special months, weeks and days that raise awareness of serious diseases and health issues. While all are valuable to advance the health of the Americans, Obesity Care Week taking place March 4-8 is especially significant.

Why?  Because even 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 or restrictive practices that delay or deny treatment.

The consequence is that that only 10 percent of people with obesity get help from medical professionals, meaning the disease remains largely undiagnosed and undertreated.

It doesn’t have to be this way. There are a variety of safe and effective treatment options. And medical societies, including the American Medical Association (AMA), agree that obesity is a complex disease requiring ongoing quality care. The key is for society – including health professionals, insurers and policymakers – to care about obesity and agree that treatment matters. Here are the reasons why.

It is long past time for health professionals, employers, insurers, policymakers and the American public to care about obesity and work collectively to break down the barriers that prevent people from accessing proper care and treatment. This is the purpose of Obesity Care Week – to shine a light on a disease that no one has wanted to talk or think about and shift the way society views obesity and treats the disease.

Obesity Care Week is also an opportunity to call attention to the first Obesity Bill of Rights for the nation, developed by NCL and the National Council on Aging in consultation with leading obesity specialists and issued in January 2024. Starting with the recognition that obesity is a treatable disease, the Obesity Bill of Rights establishes eight essential rights so adults will receive the same level of attention and care as those with other chronic conditions and have access to all treatments deemed appropriate by their health providers. Now is the time to advance changes in federal, state, and employer policies that will ensure these rights are incorporated into medical practice.

More information about the Obesity Bill of Rights is available at: www.right2obesitycare.org.

Americans now have an Obesity Bill of Rights

/in , , , , , , /by

January 31, 2024

Media contact: Nancy Glick, 202-320-5579, nancyg@nclnet.org; Simona Combi, 571-527-3982, simona.combi@ncoa.org

Washington, DC – Because obesity – the most prevalent and costly chronic disease in the United States –remains largely undiagnosed and untreated a decade after the American Medical Association (AMA) classified it as a serious disease requiring comprehensive care,[1] the National Consumers League (NCL) and National Council on Aging (NCOA) today introduced the nation’s first Obesity Bill of Rights and launched a grassroots movement – Right2ObesityCare – to advance changes in federal, state, and employer policies that will ensure these rights are incorporated into medical practice.

Developed in consultation with leading obesity specialists and endorsed by nearly 40 national obesity and chronic disease organizations, the Obesity Bill of Rights establishes eight essential rights, so people with obesity will be screened, diagnosed, counseled, and treated according to medical guidelines and no longer face widespread weight bias and ageism within the health care system or exclusionary coverage policies by insurers and government agencies.

“Our goal with the Obesity Bill of Rights is to define quality obesity care as the right of all adults and empower those with the disease to ask questions and demand treatment without discrimination or bias regardless of their size or weight” said Sally Greenberg, Chief Executive Officer of the National Consumers League. “For too long, adults with obesity have encountered a health care system that is working against them. They have been stigmatized, discriminated against, not treated with respect by their health providers, and have faced significant hurdles and burdensome requirements to receive obesity care.”

As described by Patricia Nece, J.D., Immediate Past Chair of the Obesity Action Coalition, “For my entire life, I’ve been a target of ridicule simply because of my weight. People rarely take time to look beyond my weight to see me.”

Currently, only 30 million[2] of the estimated 108 million adults living with obesity[3] have been diagnosed with the condition, and only about 2% of those eligible for anti-obesity medications have been prescribed these treatments.[4] The consequence of untreated obesity for the nation is worsening outcomes for over 230 obesity-related chronic diseases,[5] approximately 400,000 premature deaths a year,[6] and an estimated $1.72 trillion in direct and indirect costs to the U.S. economy.[7]

Defining Quality Obesity Care for All
The Obesity Bill of Rights establishes and promotes eight essential rights to drive transformational change and define the core requirements for people with obesity to receive person-centered, quality care:

  1. The Right to Accurate, Clear, Trusted, and Accessible Information on obesity as a treatable chronic disease
  2. The Right to Respect by all members of the integrated care team when screening, counseling, and providing treatment
  3. The Right to Make Treatment Decisions about one’s health goals and obesity care in consultation with the individual’s health providers
  4. The Right to Treatment from Qualified Health Providers including counseling and ongoing care from health providers with expertise in obesity care
  5. The Right to Person-Centered Care that is personalized, respects the individual’s cultural beliefs, meets their specific health goals, and considers the person’s whole health and not just their weight status
  6. The Right to Accessible Obesity Treatment from Health Systems, so those with severe obesity receive care in settings that allow for privacy, using size and weight-accessible equipment and diagnostic scans
  7. The Right for Older Adults to Receive Quality Obesity Care that comprises a respectful, comprehensive care approach consistent with their personalized medical needs
  8. The Right to Coverage for Treatment with access to the full range of treatment options for the person’s disease as prescribed by the individual’s health provider

“Collectively, these rights will ensure that adults with obesity have trusted, accurate information about their disease, respectful and nondiscriminatory care from medical professionals, and insurance that provides access to all treatments deemed appropriate by their health providers,” said Ramsey Alwin, NCOA President and CEO. “In town halls across the country, older adults told us they often feel invisible when seeking obesity care. The Obesity Bill of Rights recognizes and aims to address their unique challenges.”

Putting the Bill of Rights into practice

With the goal of reversing the trajectory of the nation’s obesity epidemic, NCL and NCOA will spearhead Right2ObesityCare, a new grassroots movement to engage people with obesity, their caregivers, health professionals, community leaders, employers, and a network of obesity and chronic disease organizations to drive adoption of the Obesity Bill of Rights in clinical settings.

Using the online hub www.right2obesitycare.org to mobilize stakeholders, Right2ObesityCare will focus on national and state policy efforts, including developing a set of national “obesity goals” for full implementation of the Obesity Bill of Rights by December 31, 2029. Plans include hosting regional town halls, workshops, and advocacy forums across the country; scheduling meetings with federal and state legislators and regulators; and arming interested citizens and advocacy leaders with materials and tools to advocate for implementation of the Obesity Bill of Rights in their communities and workplaces. NCL and NCOA also will pursue development of a model law that stakeholders can use to incorporate the Obesity Bill of Rights into state law.

“The Obesity Bill of Rights brings us a step closer to creating a society where all individuals are treated with respect and without discrimination or bias regardless of their size or weight. Establishing eight essential rights for people living with obesity strengthens efforts to end such blame, shame and discrimination and give individuals who want and need it, access to safe and effective options to improve their health,” added Joe Nadglowski, President and CEO of the Obesity Action Coalition.

Advocacy on implementing the Obesity Bill of Rights also gives policymakers new impetus to pass legislation that will remove the regulatory and insurance obstacles that keep many people with obesity from getting the care prescribed by their health providers.

According to Rep. Brad Wenstrup, DPM (R-OH), “By tackling obesity head on, we can better prevent numerous additional diseases like type 2 diabetes, high blood pressure, and heart disease. My bill, the Treat and Reduce Obesity Act (TROA), expands Medicare beneficiaries’ access to treatment options to include FDA-approved medications, clinical psychologists, registered dieticians, and nutrition professionals. Not only would this legislation help Americans live healthier and longer lives, but it can also save taxpayer dollars over the long run.”

Added Rep. Gwen Moore (D-WI), “Obesity is a chronic condition – not a personal or moral failing. We need to ensure our health care system treats it as a disease, so that Americans with obesity can access holistic, high-quality care that meets the full spectrum of their needs. I am proud to be a co-lead of the Treat and Reduce Obesity Act, which puts us on a path toward effectively treating obesity, helping create healthier outcomes for Americans and supporting enhanced quality of life for Medicare beneficiaries who need comprehensive care.”

Development of the Obesity Bill of Rights

A year in development, the Obesity Bill of Rights is the product of extensive research combined with four town hall meetings hosted in senior centers and churches in California, Delaware, Mississippi, and Oklahoma between June and August 2023. At these town halls, more than 250 older adults, community leaders, and local clinicians described a health care system that is inhospitable to delivering quality obesity care, and physicians described having limited time for counseling, not enough training in obesity management, and inadequate coverage and reimbursement for obesity care.

After turning this knowledge and the lived experiences of older adults into a first draft, NCL and NCOA hosted a roundtable at The Obesity Society annual meeting in October 2023 where leading obesity experts reviewed the preliminary document and made recommendations. NCL and NCOA then sought feedback from specialists in minority health, aging, and rural health, as well as health professionals and other stakeholders who provided additional guidance. The final step was to circulate the updated Obesity Bill of Rights to a wide group of stakeholder organizations, resulting in initial endorsements from 36 obesity, public health, and chronic disease organizations and medical societies.

Nearly 40 consumer, aging, and public health organizations endorse the Obesity Bill of Rights

To date, the following organizations have endorsed the first-ever Obesity Bill of Rights: 1) the Academy of Nutrition and Dietetics; 2) Alliance for Aging Research; 3) Alliance for Women’s Health & Prevention; 4) American College of Occupational and Environmental Medicine; 5) American Medical Women’s Association; 6) American Nurses Association; 7) American Society on Aging;  8) American Society for Nutrition; 9) Association of Black Cardiologists; 10) Association of Diabetes Care & Education Specialists; 11) Bias180; 12) Black Women’s Health Imperative; 13) Choose Healthy Life; 14) ConscienHealth; 15) Council on Black Health; 16) Defeat Malnutrition Today; 17)  Gerontological Society of America; 18) Global Liver Institute; 19) Health Equity Coalition for Chronic Disease; 20) HealthyWomen; 21) Lupus Foundation of America; 22) MANA; 23) National Asian Pacific Center on Aging; 24) National Black Nurses Association; 25) National Hispanic Council on Aging; 26) National Hispanic Health Foundation; 27) National Kidney Foundation; 28) Noom, Inc.; 29) Nurses Obesity Network; 30) Obesity Action Coalition; 31) Obesity Medicine Society;  32) Patients Rising;  33) Partnership to Advance Cardiovascular Health; 34) Preventive Cardiovascular Nurses Association; 35) The Obesity Society; and 36) WeightWatchers.

###

About NCL

The National Consumers League, founded in 1899, is America’s pioneer consumer organization. The organization’s 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.

About NCOA

The National Council on Aging is the national voice for every person’s right to age well. We believe that how we age should not be determined by gender, color, sexuality, income, or ZIP code. Working with thousands of national and local partners, we provide resources, tools, best practices, and advocacy to ensure every person can age with health and financial security. Founded in 1950, we are the oldest national organization focused on older adults. Learn more at www.ncoa.org.

 

[1] Obesity Medicine Association. June 19, 2013. “AMA House of Delegates Adopts Policy to Recognize Obesity as a Disease. Accessible at https://obesitymedicine.org/blog/ama-adopts-policy-recognize-obesity-disease/:

[2] PharMetrics-Ambulatory EMR database, 2018. Novo Nordisk Inc.

[3] Hales CM, et al. Prevalence of Obesity and Severe Obesity Among Adults: United States, 2017-2018. Centers for Disease Control and Prevention. NCHS Data Brief. No. 360. February 2020.

[4] PharMetrics-Ambulatory EMR database, 2018. Novo Nordisk Inc.

[5] Obesity Care Advocacy Network. Fact Sheet: Obesity Care Beyond Weight Loss

[6] Hurt Rt, et al. Obesity epidemic: overview, pathophysiology, and the intensive care unit conundrum. J Parenter Enteral Nutr. 2011 Sep;35(5 Suppl):45-135

[7] Milken Institute (October 2018), “America’s Obesity Crisis: The Health and Economic Costs of Excess Weight.”

The National Consumers League applauds the reintroduction of bipartisan legislation to give millions of Medicare beneficiaries access to safe and effective obesity treatments

/in , , , , , , , , , , , , , , , /by

July 21, 2023

Media contact: National Consumers League – Katie Brown, katie@nclnet.org, 202-823-8442

Washington, D.C. – The National Consumers League (NCL) welcomes the reintroduction  of the Treat and Reduce Obesity Act (TROA) as a needed step to end outdated Medicare rules that leave millions of seniors with diagnosed obesity – particularly members of Black and Latino communities – vulnerable to disability, disease and premature death due to lack of access to the full range of treatment options.

Introduced by Senators Tom Carper (D-DE) and Bill Cassidy (R-LA) and Representatives Brad Wenstrup (R-OH), Raul Ruiz (D-CA), Mariannette Miller-Meeks (R-IA) and Gwen Moore (D-WI), TROA will end this regulatory logjam by expanding coverage under Medicare Part D to new FDA-approved anti-obesity medications, which are currently excluded under a policy dating back to 2003. TROA will also end Medicare Part B restrictions on intensive behavioral therapy (IBT) that limit the delivery of IBT to primary care providers and restrict the physical locations where this care can occur. Through TROA, clinical psychologists, registered dietitians and nutrition professionals will be able to provide IBT if an individual with obesity is referred by a physician.

At a time when the obesity rate among adult Americans exceeds 40 percent and is even higher among communities of color – virtually half of African Americans (49.6 percent) and 44.8 percent of Hispanics are living with obesity – passage of TROA could be a critical step in changing the trajectory of a disease that for too long has been overlooked and undertreated. The National Consumers League applauds TROA’s reintroduction in the 118th Congress and pledges our support to gain passage of this important legislation on an expedited basis.

###

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.

Financing the healthcare of tomorrow playlist: Tracks for consumers and policymakers

/in , , , , , , , , /by

By Robin Strongin, Health Policy Director

July 12, 2023

My husband has advanced Lewy Body Dementia and one of the few things we can still enjoy together is listening to music. We used to curate playlists for all kinds of music. We even put together playlists to mark special occasions (like our daughter’s wedding). Really, any topic became fair game for a playlist.

I was invited to speak at the Patients Rising Disrupting Healthcare Summit summer conference in Washington DC. My panel topic was Financing the Healthcare of Tomorrow. As I was preparing my presentation, I spoke with Michael Capaldi, Executive Director, the Institute for Gene Therapies. Mike is an expert on gene and cell therapies, and these therapies are definitely the healthcare of tomorrow, although thankfully, we are beginning to see the promise of these therapies today. When we talked about my presentation, he said, “you know, Robin, patients are really at a crossroads:  on the one hand, they are much more educated and empowered about their care, but some of the new therapies on the horizon are so complex, the cost and time commitments to innovate in these areas are so high, that groups like the National Consumers League [i]are in position to help patients and caregivers understand these complexities.”

And that’s when it hit me. A playlist. My colleague had me at Crossroads. If you’re a fan of delta blues, like my husband and me, then you know Robert Johnson and his classic, Crossroads.  The rest of my remarks rounded out my Financing the Healthcare of Tomorrow Playlist: Tracks for Consumers and Policymakers, which include:

Crossroads (Robert Johnson)—Robert Johnson’s haunting work reminds me of the difficult choices health policymakers have to make when it comes to healthcare financing—of course research and innovation are expensive—the diseases for which there are no cures, the conditions crying out for prevention, are complex and require decades of research, a deep understanding of basic science, and navigating an unpredictable regulatory path. Too many diseases and too few resources lead to heartbreaking trade-offs. Patients also have difficult choices to make when it comes to paying for their care. We shouldn’t have to be making deals with the devil—as Robert Johnson sings about in Crossroads. Instead, we need to reframe the questions we ask, review how we prioritize funding streams, and think creatively about financing mechanisms. Rather than question if society spends too much on healthcare, we should be asking how can we spend it more efficiently? How do we adequately incentivize all involved in funding transformational innovation? How do we make sure patients can afford and access the treatment they need?

I Am Woman (Helen Redding)—it gets really old but here we are, still talking about, and working on, closing the gender gap—in raising capital for venture funding for women-lead innovation teams; and in awarding grants to women lead research teams. Did you know, that according to the NIH Database monitoring NIH grants, grants awarded to women lead teams in 2022 numbered 19,028 and in the same year men won 31, 560 NIH grants? Progress yes, but not good enough. Not even close. Why is this important?  Because the teams with funding ask the research questions. The more diverse the research teams, the broader the array of diseases that are studied. More cures for more people.

Your Cheatin’ Heart (Hank Williams, Jr.)—I want to be careful and not paint all hospitals with the same brush but I would be remiss not to point out that too many hospitals are behaving badly: taking huge advantage of their nonprofit status, aggressively placing liens on patients who can’t afford their care, engaging in abusive debt collection activities, and worse, denying care; manipulating the 340B program designed 30 years ago to enable true safety-net providers to help low-income and other vulnerable patients access more affordable medicines and healthcare services. Some entities participating in the 340B program have taken advantage of the program’s current lack of clarity at the expense of the patients that the program is meant to serve.

Bad to the Bone (George Thorogood) – When it comes to taking advantage of our healthcare system, one major player in the drug pricing process might be considered “bad to the bone” – pharmacy benefit managers, or PBMs. PBMs continue to find ways to increase their profits while consumers are forced to pay high out-of-pocket costs for the prescription medicines they need. Although they were intended to help negotiate savings on medicines (which would be good), they are not passing along discounts to patients and are actually incentivized to steer patients to higher cost medicines – b-b-b-b-bad to the bone if you ask me!

Party Like It’s 1999 (Prince)—Shakespeare asked, What’s in a name? Fair question. Reminds me to also ask, what’s in a definition and when is it time to update it? How we defined value, quality (as in value of care, quality of care) and other terms in 1999, needs to be reevaluated on an ongoing basis. New innovations, insights, and understandings necessitate we revisit how we define, measure, and update the terms and metrics used to make decisions that affect healthcare financing. A great example comes from another colleague[ii]  who has co-authored and published compelling work on a “paradigm shift in managing high blood pressure.” He and his colleagues make the case that “Abandoning the view that hypertension is a disease in favor of regarding it as a cause of a disease and hence, adopting a population-based preventive approach would encourage the development of simpler guidelines.” Refreshed decades old thinking that could yield the elusive results the status quo has not achieved seems worthy of a party, like its 2023.

I Will Survive (Gloria Gaynor) and Stayin’ Alive (The Bee Gees)—Really, isn’t this what we are all trying to do?

A Change Is Gonna Come (Sam Cooke)—for patients like my husband, for our family, and for all the other patients and caregivers, change cannot come soon enough.  I pledge to do everything possible to advocate for meaningful change and help Patients Rising.

[i] I direct health policy for National Consumers League

[ii] Wald, Nicholas J., Wald, David S., Kellermann, Arthur L., “When Guidelines Cause Hypertension,” Commentary, The American Journal of Medicine, 2018, pp. 1402-4.

We must never forget the importance of vaccines

/in , , , , , , , , /by

Sally Greenberg

By Sally Greenberg, Chief Executive Officer

I have written before about being born into a family that experienced the agony of the polio epidemic. My uncle Roger Joseph’s battle with the disease—including his diagnosis in 1951 by my father, a practicing internist—devastated our entire family. My uncle, a golden boy, popular, handsome, brilliant, and kind, graduated from the University of Minnesota and Harvard Law School; he also won a silver star for his military service in WW2. Married with three daughters, he had a thriving law practice when he fell ill.

His case was severe and rendered him paralyzed. Confined to an Iron Lung for two years, the device was designed to stimulate breathing in patients whose lungs no longer functioned. With a great deal of therapy, my Uncle Roger, by then quadriplegic, moved to a motorized wheelchair that he ended up using for the rest of his life. He doted on his children, moved in with my grandmother, slept in a rocking bed to facilitate his breathing, and had an attendant on duty 24 hours a day. When we visited my grandmother, we visited our uncle too. He also came to our home for Sunday dinners, and I recall him taking breaths carefully before speaking, and when he did, he was wry and funny. He also had to learn to write again with his non-dominant hand. My mother, who had always idolized him, marveled at how his handwriting never changed.

My uncle lived 16 years with polio, thanks to a loving family, modern medicine, financial wherewithal, his wheelchair, and his attendant. Paralyzed from the neck down, he nonetheless spent these years productively, doting on his daughters, going to work every day, and attending baseball games, and even traveling abroad.

In 1954, U.S. physician Jonas Salk developed a vaccine to prevent the disease. The polio vaccine was first tested on 1.6 million children in Canada, Finland, and the United States before it was used more broadly. By 1957, annual cases had dropped from 58,000 to 5,600, and by 1961, only 161 cases remained. Had my uncle had access to the vaccine, he never would have gotten sick.

The powerful lessons about vaccines weren’t lost on anyone in my family. This explains why I feel obligated to confront head-on the dishonesty and lies of the anti-vaxxers. I have traveled to the CDC and the FDA numerous times to testify in support of childhood and adult vaccinations, and each time have been confronted by vaccine deniers.

Here’s the problem: Those of us with memories of family members with devastating diseases like polio are aging out. We are victims of our own success in wiping out childhood diseases. Younger generations have now been vaccinated for polio, measles, rubella, mumps, influenza, diphtheria, tetanus, and whooping cough so they do not know the trauma these illnesses caused to millions of families. Come to think of it, I’m in that category myself.

Florence Kelley, who in 1899 launched the National Consumers League, wrote in the 1880s about the dark days of “diphtheria”; she lost three young siblings to the disease, which sent her mother into lifelong depression. But I have never known anyone with diphtheria, thanks to vaccines.

My 27-year-old son never had measles—nor any of his friends. But my siblings and I all did, along with rubella, chicken pox, and the mumps. Measles alone is far more serious than often understood. In 2021 alone it killed nearly 128,000 unvaccinated children under age 5 around the world.

All of which leads me to the reason I have written this blog. Each year, Uncle Roger’s daughters proudly award the Roger E. Joseph Prize, (created by my Uncle Burton Joseph, in honor of his brother and their dad) and for this year’s prize, my cousin Linda produced a video; it tells a compelling story of her experience with her father’s illness. Hebrew Union College, which graduates reform rabbis, hosts the awards. Honorees have included Rosa Parks, Henry Louis Gates, Morris Dees, Sara Bloomfield, and the Center for Reproductive Rights. A complete list is at the link below.

Indeed, the Roger E. Joseph Prize is a point of immense pride for our family, but it also gives us the opportunity to talk about diseases like polio and, now Covid, and the critical importance of the vaccines developed to prevent them.

How truly fortunate we are to have a medical establishment that has helped to prevent families from suffering, the way ours did, when a loved one falls ill from an infectious disease.

As the anti-vaccine movement grows each year—a = movement that traffics in conspiracy theories and junk medicine—note Robert Kennedy Jr.’s anti-vaccine crusade, which his own family has denounced in this article published by Politico.

Now more than ever we need to have conversations about the critical importance of vaccines.

http://www.rogerejosephprize.org/about-the-prize

NCL statement on FDA review of the oral toxicity of cannabidiol (CBD)

/in , , , , , /by

May 12, 2023

Media contact: National Consumers League – Katie Brown, katie@nclnet.org, 202-823-8442

Washington, D.C. – This week, researchers from the Office of Food Additive Safety, Center for Food Safety and Applied Nutrition, Food and Drug Administration (FDA) published an analysis on the toxicity of cannabidiol (CBD). 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 cannabidiol (CBD) products has exploded. NCL Chief Executive Officer, Sally Greenberg, released the following statement:

“We’re encouraged to see the experts at the FDA continue efforts to study CBD. These findings unfortunately further validate our concerns around the risks, including negative drug-drug interactions, disruption of critical metabolic pathways, liver injury, reproductive toxicity, and more. These concerns are of course heightened by the fact that many consumers are using products without physician oversight and often use products for long periods of time. The data highlights the need to ensure that FDA has sufficient regulatory tools and resources to mitigate public health risks in this wild west CBD marketplace.”

Learn more about the path to safe cannabis and CBD use here. And learn more about the cannabis consumer market at cannabiswatch.org.

###

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.

NCL applauds expansion of Medicaid in North Carolina

/in , , , , /by

March 28, 2023

Media contact: National Consumers League – Katie Brown, katie@nclnet.org, 202-823-8442

Washington, D.C. – North Carolina became the 40th state to expand Medicaid under the Affordable Care Act. “NCL applauds Governor Roy Cooper, the work of relentless advocates, and those in the state legislature -Republicans and Democrats- who worked to make this week’s legislation possible,” said Robin Strongin, director of NCL’s health policy work. House Bill 76, the Access to Healthcare Options, is expected to provide health coverage to over 600,000 people throughout North Carolina.

“The expansion of Medicaid is a lifeline for those in need, shoring up rural health care, strengthening mental health services, improving access to health care for working families. The other 10 states should follow North Carolina’s lead,” continued Strongin.

Governor Cooper proposed using a portion of the almost $1.8 billion Medicaid expansion signing bonus to create the Improving Health Outcomes for People Everywhere (IHOPE) Fund.  Medicaid expansion will take effect upon the signing into law of the FY 2023-25 appropriations act.

###

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.