NCL launches campaign to warn Americans about Chinese government’s collection of U.S. consumers’ genetic data 

September 7, 2022

Media contact: National Consumers League – Katie Brown, katie@nclnet.org, (202) 207-2832 

WASHINGTON, D.C. – The National Consumers League (NCL) today announced it is launching a national campaign – www.protectmypatientdata.com – to warn Americans of the threat posed by the Chinese government’s collection of U.S. healthcare and genomic information. The campaign will target consumers, healthcare leaders, and lawmakers and will highlight the privacy and national security risks resulting from this bulk collection of data.

According to a February 2021 report from the U.S. National Counterintelligence and Security Center (NCSC), the Chinese government has made the collection of American healthcare information a top strategic priority and has gained access to large datasets in the U.S. and around the world through both illegal and legal means. This includes partnering with prominent research and healthcare entities in the U.S. to provide them with genomic sequencing services, allowing them to gain access to Americans’ health records.

On June 3, 2021 President Biden signed an Executive Order to further “address the threat of Chinese surveillance technology firms that contribute – both inside and outside China – to the surveillance of religious or ethnic minorities or otherwise facilitate repression and serious human rights abuses.”

“Genetic data remains one of the most sensitive and least protected types of personal information and yet the consequences of it falling into the wrong hands are profound,” said Sally Greenberg, executive director of NCL. “Authoritarian governments have already used genomic data to potentially surveil and control their own citizens and to conduct unsanctioned scientific research. That is why NCL is sounding the alarm and urging consumers and healthcare providers to be more diligent than ever when sharing personal healthcare information with third parties, particularly those funded or operated by the Chinese government.”

NCL has a long history of calling for consumer protections in the genetic testing industry. In February 2019, NCL issued a statement calling for investigation of direct-to-consumer genetic testing services like FamilyTreeDNA in the wake of reports that these services were sharing genetic data with law enforcement agencies.

On August 29, 2022, MGI Americas, an affiliate of Chinese genome research giant BGI, re-entered the U.S. next-generation sequencing market, having been previously barred from selling its genome sequencing machines in America. BGI is closely affiliated with the Chinese Communist Party (CCP) and People’s Liberation Army (PLA) and the data it collects has no legal protection against disclosure to the Chinese government.

A recent Reuters investigation found that BGI had scraped the DNA data of pregnant women from its pre-natal test kits and added them to the China National GeneBank, which it manages for the Chinese government. BGI has also been implicated in the repression of the Uighur minority in Xinjiang, for which two of its entities were sanctioned by the U.S. Department of Commerce.

NCL is urging providers and researchers to be cognizant of the risks of partnering with BGI and other Chinese healthcare companies, whose collection of data could be used to advance the country’s precision medicine industry and for more nefarious purposes, including the potential surveillance, exploitation, and manipulation of American citizens. NCL recently published a Genetic Privacy Bill of Rights and released a Policy Framework detailing steps that Congress, the Biden Administration, and industry can take to protect these consumer rights.

In addition to the education campaign, NCL will also embark on a series of initiatives to protect consumers:

  • Working with Members of Congress to create and implement new protections for genetic data, such as the Protecting Americans’ Data from Foreign Surveillance Act, introduced by Sen. Wyden (D-OR), Sen. Whitehouse (D-RI), Sen. Rubio (R-FL), Sen. Lummis (R-WY), and Sen. Hagerty (R-TN).
  • Engaging with the Biden Administration as they develop a potential Executive Order aimed at increasing protections for sensitive personal information, like genetic data.
  • Participating in the Federal Trade Commission’s (FTC) rulemaking process regarding privacy and data protection, to ensure that genetic data is also protected.
  • Educating health care research institutions and major health care associations about the unique risks posed by a lack of safeguards for genetic testing, and what they can do to increase protections.

 

###

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.

The National Consumers League mourns the death of NCL Awardee, labor champion and writer, Barbara Ehrenreich

September 6, 2022

Media contact: National Consumers League – Katie Brown, katie@nclnet.org, (202) 207-2832 

WASHINGTON, D.C. – The National Consumers League is mourning the death of one of our Trumpeter Awardees, best-selling author of Nickel and Dimed, and hourly worker champion Barbara Ehrenreich.  Ehrenreich accepted NCL’s Trumpeter Award in 2008, which was presented because of her writing on behalf of the working poor.  In Nickel and Dimed,  Ehrenreich traveled around the country working minimum wage jobs and writing about how very difficult that was to do; she wrote a compelling narrative about impossibility of making ends meet, even as a single woman, living on jobs like restaurant server and hotel maid. She described in graphic detail the daily grind and many demeaning experiences she encountered.

NCL Executive Director Sally Greenberg speaks to her immense impact on the labor industry, “Barbara Ehrenreich talked the talk, and walked the walk with her long and admirable history of raising awareness about the plight of working Americans.  Nickel and Dimed showed the world just how difficult it is to live on subsistence wages, find housing, health care, buy food, own a car and then have to go to work. She pulled the veil off of the faulty notion that working people can comfortably live off minimum wage jobs. We owe her a debt of gratitude for putting her life on hold to work these jobs and write about the economic reality for working people.”

NCL was honored to have Ehrenreich at our annual Trumpeter Dinner in 2008, present her with the Trumpeter Award, and we mourn her passing this past Labor Day holiday.

###

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.

Airline hotel and meal voucher commitments are a positive step forward

September 2, 2022

Media contact: National Consumers League – Katie Brown, katie@nclnet.org, (202) 207-2832 

WASHINGTON, D.C. – The National Consumers League (NCL) welcomes the major U.S. airlines’ commitments to provide meals and hotel rooms for travelers stranded due to delays within air carriers’ control. This announcement comes as consumer and passenger rights organizations have advocated for greater protections for travelers within the aviation industry.

The following statement is attributable to NCL Executive Director Sally Greenberg:   

“In July 2021, NCL, alongside a coalition of other consumer and passenger rights groups, met with Transportation Secretary Pete Buttigieg. A key ask to him was to publicly and personally make the DOT’s airline consumer protection work a priority. As today’s announcement shows, he is taking our challenge to heart. Absent pressure from the Department of Transportation, driven by an unprecedented wave of consumer complaints, it is hard to imagine that the biggest U.S. airlines would have made a commitment to provide meal and hotel vouchers and reimbursement to stranded consumers. While there is much more work to be done achieving a range of consumer protection reforms in the airline industry, today’s news is a positive step forward.” 

 

###

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.

National Consumers League applauds President Biden’s plan to cancel $10,000 in federal student loan debt to millions of Americans

August 24, 2022

Media contact: National Consumers League – Katie Brown, katie@nclnet.org, (202) 207-2832 

WASHINGTON, D.C. – The National Consumers League applauds President Biden’s decision to relieve student borrowers of billions of dollars in educational debt and to extend the federal loan repayment moratorium. By cancelling $10,000 in student debt for borrowers earning less than $125,000 and cancelling $20,000 for borrowers who received Pell Grants, this administration is providing direct aid to consumers suffering from the plight of educational debt.

The following statement is attributable to NCL Executive Director Sally Greenberg:

“President Biden is providing critical assistance to millions of borrowers across the country. Importantly, this executive order will work to negate the impact of student debt that disproportionately affects women and Black borrowers. As consumers face increased rents, grocery costs, fuel prices, and even student loan interest rates, educational debt cancellation will help provide relief on strained household budgets by reducing—and in many cases eliminating—student debt costs.”

###

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.

National Consumers League weighs in on FDA’s OTC Hearing Aid Rule, encourages consumers to consult with medical professionals

August 17, 2022

Media contact: National Consumers League – Katie Brown, katie@nclnet.org, (202) 207-2832

Washington, DC – Today, the U.S. Food and Drug Administration (FDA) issued its final rule enabling access to over-the-counter hearing aids for consumers with perceived mild to moderate hearing loss. National Consumers League (NCL) strongly supports expanding access to and affordability of hearing aids. NCL is encouraged by the positive impact these policy changes will have on increasing access to life-altering hearing aids. “We hope this means that more people will proactively assess their hearing loss and seek the help they need for their hearing health needs” said Sally Greenberg, Executive Director of NCL.

At the same time, while OTC hearing aids are a promising first step in achieving that goal, NCL remains concerned about potential consumer safety issues surrounding the use of OTC hearing aids without consultation of a trained, medical professional. NCL strongly encourages consumers to first consult with a medical professional before treating their perceived hearing loss with a hearing aid, including those that will be sold OTC.

Safety is the cornerstone of NCL’s mission. This is why NCL, along with 90 leading healthcare and consumer organizations, weighed in during the public comment period and via a group letter to FDA urging the agency to adopt lower the maximum outputs for OTC devices and establish a limit on gain. This limit has been recommended by leading hearing health professional organizations to ensure consumer safety. FDA ultimately lowered the maximum outputs in the final rule but decided against establishing a gain limitation. While we are pleased that the FDA recognized the need to lower the maximum outputs, we believe these devices could have been safer by limiting the amount of gain, as recommended by hearing care professionals. The lack of a gain limit, coupled with excessive amplification of sound for prolonged periods of time, may put some consumers at risk of experiencing increased hearing loss.

Because hearing loss is a medical condition that is unique to each individual, it should be addressed in consultation with a hearing care professional. With OTC hearing aids expected to be in stores as early as mid-October, NCL encourages consumers to purchase hearing aids in consultation with a professional who can help them fully understand the nature of their hearing loss, if any exists at all, and ensure that the treatment plan is appropriate for their needs, including the potential use of OTC hearing aids.

If consumers experience any adverse events or complications related to the use of OTC hearing aids, including worsening hearing after using such a device, NCL encourages consumers to report these events to the FDA. Instructions for reporting adverse events, are available at https://www.fda.gov/safety/medwatch, or by calling (800) FDA-1088.

###

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.

The National Consumers League commends the enactment of the Inflation Reduction Act in increasing Medicare and Medicaid beneficiaries’ access to adult vaccines

August 17, 2022

Media contact: National Consumers League – Katie Brown, katie@nclnet.org, (202) 207-2832

Washington, DC – The National Consumers League (NCL) is tremendously encouraged by the enactment of the Inflation Reduction Act (H.R. 5376), which includes important provisions to increase access to adult vaccines. More specifically, the Act will provide all recommended adult vaccines to Medicare and Medicaid beneficiaries at no cost to patients.

NCL has been a longstanding advocate of expanding vaccine access to consumers, and recognizes the importance of vaccines as a life-saving, preventive public health measure. As a member of the Adult Vaccine Access Coalition (AVAC), NCL supports increasing access to all recommended adult vaccines by eliminating no cost sharing policies, which can place an immense financial burden on patients. As with any other health service, cost burden has kept both Medicare and Medicaid beneficiaries from receiving their recommended adult vaccines. Limiting vaccine access is harmful, and keeps adults from protecting themselves and their communities from preventable disease.

The crucial vaccine provisions within the Inflation Reduction Act include language from both the Protecting Seniors Through Immunization Act, and the Helping Adults Protect Immunity (HAPI) Act, both spearheaded by AVAC and advocated for by NCL. The Act will provide free recommended adult vaccines for both Medicare and Medicaid beneficiaries starting in 2023. It also mandates that under Medicare Part D, there will be no copays or any other out-of-pocket expenses for any adult vaccine that is recommended by the Advisory Committee on Immunization Practices (ACIP). In addition, Medicaid and CHIP will increase access to adult vaccines by improving federal reimbursement for providers that immunize those patients. Expanding access to vaccines through these mandates will promote vaccine uptake through the removal of cost burden for both Medicare and Medicaid beneficiaries.

The inclusion of these provisions in the Inflation Reduction Act is a critical step towards increasing vaccine access and coverage to Medicare and Medicaid beneficiaries nationwide. Its enactment will not only promote better health outcomes for consumers, but also represents a significant step towards expanding health equity. NCL appreciates President Biden’s swift action in signing this landmark piece of legislation yesterday.

###

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 strongly supports FDA’s proposal to ban menthol

August 3, 2022

Media contact: National Consumers League – Katie Brown, katie@nclnet.org, (202) 207-2832

Washington, DC – The National Consumers League filed comments today with the Food and Drug Administration (FDA) in support of the agency’s proposal to ban menthol products.

“We commend the FDA’s actions, though we believe the ban on menthol cigarettes in the United States should have been implemented years ago,” said Sally Greenberg, Executive Director of NCL. “Nevertheless, this ban on menthol will save hundreds of thousands of lives and will have especially important positive benefits for African Americans because tobacco companies have relentlessly marketed menthol cigarettes to African Americans for decades.”

NCL recently recorded a podcast with the African American Tobacco Control Leadership Council, the country’s leading public health education and advocacy organization taking on Big Tobacco to save Black lives. The podcast can be found here: https://nclnet.org/menthol-cigarettes-going-up-in-smoke/

NCL also noted that the United States is an outlier among nations of the world in its proposal to ban menthol just now. The EU implemented a ban for its 28 member countries in 2020.

“Menthol enhances the addictive effects of nicotine in the brain,” said Greenberg. “The tobacco industry knew this and yet continued to market the product to Americans, especially targeting African Americans. Menthol is associated with progression to regular cigarette smoking in youth and young adults.”

###

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.

National Consumers League releases its Top Food and Nutrition Policy Priorities for 2022

July 20, 2022

Media contact: National Consumers League – Katie Brown, katie@nclnet.org, (202) 207-2832

Washington, DC – At a time of significant change in the food industry, the National Consumers League (NCL) today released a food policy agenda to improve food safety, reduce sodium in the diet, achieve better portion control, increase transparency in food and beverage labeling, and promote a more sustainable food system. Additionally, NCL is calling for a national strategy to ensure there will be an ample supply of safe infant formula products in the US along with aggressive regulatory oversight.

“Currently, over 335 million people live in the US, and all are consumers who deserve to be represented in the regulation of the foods and beverages they consume and serve to their families,” said Sally Greenberg, NCL’s Executive Director. “Especially now when technology is changing food production, food safety protocols, and the composition of novel and reformulated foods and beverages, NCL will speak for consumers on strengthening the food safety system, filling the gaps in food labeling, alleviating food insecurity, and reducing food waste.”

Addressing serious food safety lapses and areas where regulation has not caught up to changes in food production, manufacturing, and market trends, NCL’s agenda concentrates on 11 priorities where education and changes in public policy will have a direct and positive impact on the American public:

1. Strengthen the Food Safety System

As the Food and Drug Administration (FDA) moves forward with its New Era of Smarter Food Safety Blueprint, NCL will press FDA to finalize its Food Traceability Proposed Rule, enabling rapid traceback to the source of a contaminated food. Similarly, NCL will stress the need for the U.S. Department of Agriculture (USDA) to modernize poultry safety rules and update food safety rules, such as expanded pathogen testing in meat and poultry products and updated safe handling instructions label for these products.

2. Ensure the Safety and Availability of Infant Formula

The critical shortage of infant formula in the U.S. requires a national strategy to ensure there will be an ample supply of safe infant formula products in the US along with aggressive regulatory oversight of the safety protocols at U.S. manufacturing facilities. NCL will also advocate for policies that increase the number of companies manufacturing infant formula, and changes in the Special Supplemental Nutrition Program for Women, Infants, and Children (WIC) program that allow for more flexibility in the range of infant formula products available through WIC.

3. Make Alcohol Facts Labeling Mandatory

Since 2003, NCL and the Center for Science in the Public Interest have taken the lead in pressing the federal agency that regulates most alcoholic beverages – the Treasury Department’s Bureau of Alcohol and Tobacco Tax and Trade Bureau (TTB) – to issue rules requiring an easy-to-read, standardized “Alcohol Facts” label on all beer, wine and distilled spirits products. Because this

labeling now appears on hard ciders, wine coolers, certain beers and other products regulated by the FDA, NCL, CSPI and the public health community are stepping up the fight to make mandatory alcohol labeling a reality.

4. Reduce Excess Sodium in the Diet

Because Americans on average consume 50 percent more sodium per day than is recommended, NCL will continue to raise awareness of the goal set by FDA to lower sodium intake to 2,300 milligrams (mg) per day and encourage consumers to use the Nutrition Facts label to choose products with less sodium, reduced sodium or no sodium added.

5. Require Labeling of Caffeine Content

While FDA considers 400 mg of caffeine per day as the amount not generally associated with dangerous side effects, the agency only requires food labels to disclose whether there is added caffeine in the food or beverage, not the total amount. Therefore, NCL is calling for new policy requiring all products containing caffeine to list the amount of caffeine per serving and per container.

6. Ensure Transparency in the Labeling of Plant-Based Meat Alternatives

In June 2022, NCL released a new report, Education and Transparency in Labeling Plant-Based Meat Alternatives: A Consumer-Focused Agenda to Improve Understanding and Decision-Making of Plant-Based Meats, which lays out seven priorities for regulatory action, including the requirement that labels on PBMAs are standardized and clarify the protein source and that nutrition/health claims for these products undergo FDA review and are supported by available scientific evidence. 

7. Improve the Labeling of Alternative Sweeteners

Although NCL applauds FDA’s decision to include “Added Sugars” on the recently updated Nutrition Facts Label, the organization supports a Citizen Petition to ensure transparent labeling of substitute sweeteners and is urging FDA to stop misleading claims, such as “No Added Sugars” and “Zero Sugar,” that imply the product is healthier than the original without disclosing that the sugar reduction resulted from reformulating with artificial substances and sugar alcohols. 

8. Modernize Food Standards of Identity

Because many “standards of identity” – recipes for what a food product must contain and how it is manufactured – are now 75 and even 80 years old and out of date, NCL supports FDA’s action plan to modernize food standards of identity. However, NCL urges FDA to focus on several food products where updating SOIs will lead to healthier offerings, such as olive oil, Greek yogurt, and canned tuna.

9. Improve Federal Nutrition Education and Food Labeling Policies by Elevating the Role of Portion Control and Balanced Food Choices, Revising the Definition of “Healthy,” and Developing Uniform Front of Pack Nutrition Rating Symbols

NCL is implementing a three-phased strategy to improve nutrition education and food labeling policies, which entails: 1) education and advocacy that emphasizes portion control and ensures consumers know the recommended daily intake of calories is 2,000 per day, 2) furthering FDA’s efforts to define the term “heathy” on food labels by addressing if and how added sugar content is calculated; and 3) encouraging FDA to adopt a “Traffic Light” labeling system to depict “healthy” foods on the front of the package.

10. Increase Funding and Access to Federal Nutrition Programs

NCL’s advocacy to enhance the Supplemental Nutrition Assistant Program (SNAP) during the COVID-19 pandemic helped to increase access to healthy food to people in need. Now, NCL is working with partners to broaden the public health impact of SNAP by reducing the eligibility requirements, strengthening the nutritional goal for SNAP and providing incentives for healthier foods sold in retail establishments.

11. Reduce the Amount of Food Waste

Because about 90 billion pounds of food goes uneaten every year in the US, NCL is working to help the nation meet the goal of reducing food waste by 50 percent by 2030. As such, we will continue working with USDA, FDA and the Environmental Protection Agency (EPA) to raise awareness of food loss and waste and inform consumers of how they can reduce food waste in their homes.

###

 

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 applauds the FDA for renewing its focus on infant formula

July 14, 2022

Media contact: National Consumers League – Katie Brown, katie@nclnet.org, (202) 207-2832

Washington, DC— The National Consumers League (NCL) applauds the Food and Drug Administration (FDA) for taking strong steps to assure consumers that infant formula coming from overseas has been properly inspected and is free from contaminants or adulterants and therefore safe for infants.

“Consumers should have confidence that the infant formula that is being imported to the U.S. … involved a thorough review of the information provided by the companies, including details about the product’s nutritional adequacy and safety, microbiological testing results, labeling information, and importantly, details about the manufacturing facility’s food safety production practices and inspection history,” according to a press statement posted on FDA.gov.

Over the past few months NCL, the nation’s oldest consumer advocacy organization, has issued several statements on the infant formula shortage. The shortage was caused primarily by the unconscionable and unsanitary practices at Abbott’s Michigan infant formula facility when it failed to follow safety protocols, falsified documents to the FDA, and then shipped contaminated formula resulting in babies contracting foodborne illnesses and as many as nine infant deaths, according to FDA documents. Abbott’s reckless actions – coupled with the FDA’s slow response to the outbreak – finally lead to both parties issuing a recall of the faulty formula and ultimately triggered a nationwide shortage of powdered infant formula.

As FDA renews its focus on infant formula, NCL applauds the agency’s determined outreach to keep parents informed about how to read food labels from products made abroad. These labels use metric measurements that consumers in the United States may not easily comprehend. Most importantly, FDA has ramped up inspections of the products to ensure good and safe manufacturing processes.

Below are several statements on the infant formula crisis issued by NCL in the past few months, one of which includes our June 16 testimony before a Senate Judiciary Subcommittee.

https://nclnet.org/ncl-applauds-fda-response-formula-shortage/

https://nclnet.org/senate-testimony-consolidation-harms-consumers/

https://nclnet.org/baby-formula-shortage/

 

###

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.

A New Patient-Centered Action Agenda calls for people with obesity to have the same rights and access to care as people with other chronic diseases

July 7, 2022

Media contact: National Consumers League – Katie Brown, katie@nclnet.org, (202) 207-2832

Washington, DC— The National Consumers League (NCL) today released A New Patient-Centered Obesity Action Agenda: Changing the Trajectory of Obesity Through Patient Empowerment, Health Professional Intervention and Supportive Government Policies, a new report with a blueprint to change how Americans think about obesity, empower people with obesity to get the best care, and afford those with obesity the same access to care as adults with other serious chronic diseases.

Issued as a call to action, the report was prepared in consultation with a panel of leading obesity specialists as a roadmap for overcoming one of the difficult challenges affecting US adults now living with obesity: despite significant advances in the understanding and treatment of obesity, only 10 percent of people with obesity get help from medical professionals,[1] meaning the disease remains largely undiagnosed and undertreated. Accordingly, only 30 million[2] of the estimated 108 million adults living with obesity[3] have been diagnosed with the disease and only around 2 percent of those eligible for anti-obesity medications have been prescribed these drugs.[4]

The consequences of undertreatment affect virtually every aspect of the healthcare system. Obesity not only has a negative impact on almost every aspect of health and well-being, but it worsens the outcomes of over 230 obesity-related chronic diseases, from type 2 diabetes and heart disease to some forms of cancer.[5] Accordingly, obesity is responsible for an approximately 300,000 premature deaths each year[6] deaths and costs the U.S. economy an estimated $1.72 trillion annually in direct and indirect costs.[7]

“Although obesity is one of today’s most visible public health problems, it is often ignored and discounted as a serious disease, resulting in a health crisis that has only worsened with time,” said
Sally Greenberg, NCL’s Executive Director. “This report focuses attention on the numerous public perception, provider and policy-related factors that preclude Americans with overweight and obesity from getting effective treatment and must be addressed if obesity outcomes are to improve in the US.”

To change the trajectory of the obesity epidemic, the report calls for a national mobilization to overcome the “human” factors– incorrect beliefs about the cause and treatment of obesity, prejudice towards people due to their size, lack of training for health providers, access barriers, and outdated government policies – that continue to prevent Americans from seeking and obtaining obesity care. Towards this end, NCL’s patient-centered action agenda identifies nine priorities for action:

  1. Redefine Obesity for the American Public as a Treatable Chronic Disease

Although the American Medical Association classifies obesity as a chronic disease requiring treatment, three-quarters of Americans believe obesity results from a lack of willpower. Thus, redefining obesity as a treatable chronic condition will provide a new context for health providers and patients to have a positive discussion about weight, leading to more people getting diagnosed and treated.

  1. Adopt Patient-First Language for Obesity

Unlike other chronic diseases where health professionals use people-first language that puts a person before a diagnosis, practitioners routinely use terms to describe obesity that can be off-putting and demoralizing. To change this situation, the National Consumers supports the agenda of the People-First Initiative launched by the Obesity Action Coalition, which advocates for widespread adoption of people-first language by practitioners in all healthcare settings.

  1. Make Combatting Weight Stigma a National Priority

Studies show that 40 percent of healthcare professionals –physicians, nurses, dietitians, psychologists and medical students – admit to having negative reactions based on a person’s size.[8]Addressing this pervasive problem requires a unified national initiative that makes the impact of weight stigma “real” for clinicians and the public and disseminates the latest information to health providers on strategies to reduce weight stigma.

  1. Elevate the Need for Physician Training in Obesity

A recent study of 40 US medical schools finds that 30 percent of these institutions provide little or no education in nutrition and obesity interventions while one third of schools reported no obesity education programs in place.[9] These findings underscore the urgency for US medical schools to change their priorities and develop curricula that comprehensively addresses the disease of obesity.

  1. Establish Excess Weight as a Vital Sign

Besides body temperature, blood pressure, heart rate and respiration, health providers routinely measure height and weight at each visit. Thus, if healthcare professionals were to calculate and provide patients with their Body Mass Index (BMI) at the time of the office visit, practitioners could have a tool to discuss excess weight when patients are most receptive to discussing their health status.  It is recognized that BMI is a crude measure and not the sole predictor of obesity but when combined with patient-friendly information that explains the level of weight and options for treatment, this interaction could initiate a positive, respectful conversation about obesity care.

  1. Provide the Tools for a Doctor-Patient Dialogue on Excess Weight

A major reason primary care providers (PCPs) are reluctant to provide obesity counseling is the lack of informational tools to have conversations with patients about their weight status and care options. Therefore, a unified effort to make available to PCPs evidence-based, patient-friendly content on obesity will facilitate a better dialogue between clinicians and patients and promote shared decision-making.

  1. Establish Coverage of Obesity as a Standard Benefit Across Insurers and Health Plans

Although employers and insurers are starting to cover treatment options for obesity in employee benefit packages, too many people continue to be denied coverage or face access barriers, such as step therapy and prior authorization, that delay treatment. Improving obesity outcomes therefore requires supporting legislative efforts, like the “Safe Step Act” that would require group health plans to provide an exception process for step-therapy protocols. It also necessitates collaboration among payers, providers, policymakers, and advocates to establish a standard, affordable benefit for the prevention and treatment of obesity that applies across plan types and payers.

  1. End Outdated Medicare Rules That Exclude Coverage for Necessary Obesity Care

Today, the many millions of Americans enrolled in the Medicare program are denied safe and effective obesity treatment due to outdated Medicare Part D rules that exclude coverage for FDA-approved obesity drugs and Medicare Part B policies that places undue restrictions on intensive behavioral therapy by allowing only primary care providers to deliver IBT and severely restricting the physical locations where this care can occur. Congress has the power to change this situation, which is why NCL has joined with the obesity, public health and nutrition communities is pressing for swift passage of the Treat and Reduce Obesity Act (TROA). The proposed legislation would expand Medicare coverage to allow access to IBT from a diverse range of healthcare providers while ending the exclusion for new anti-obesity medications that are improving the standard of care for adult Americans with obesity.

  1. Create a Patients’ Bill of Rights for People with Obesity

For too long, people with obesity have been stigmatized, discriminated against, and have faced significant hurdles and burdensome requirements to receive care. Changing this situation will require giving people with obesity the knowledge, skills and confidence to be advocates for their best obesity care. Therefore, NCL’s patient-centered obesity action agenda calls for the creation of a Patients’ Bill of Rights for People with Obesity based on the recognition that obesity is a treatable disease and everyone with obesity deserves the same level of attention and care as those with other chronic conditions.

###

About the Report

To prepare the report, NCL partnered with the Obesity Care Advocacy Network (OCAN) to host a roundtable discussion in December 2021where public health specialists, leading professional societies, the minority health field and the obesity policy community assessed the state of the science on obesity today, the scope and cost of the disease in the US and the major barriers impeding quality obesity care with special attention to the “human” obstacles that keep people with obesity from seeking or obtaining treatment. Additionally, NCL conducted a literature review to gather additional insights, especially regarding how to change how people with obesity see themselves, so they become empowered to advocate for their care as patients with a chronic disease. Based on this assessment, NCL drafted the report, which was vetted by experts participating in the roundtable, and developed the policy recommendations included in the Patient-Centered Obesity Action Agenda.

 

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.

 

[1] Stokes A, et al. Prevalence and Determinants of Engagement with Obesity Care in the United States. Obesity. Vol. 26, Issue 5; May 2018, 814-818

[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] Allison DB, et al. Annual deaths attributable to obesity in the United States JAMA 1999Oct 27 282(16)1530–8.

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

[8] Fruh SM, et al. Obesity Stigma and Bias. J Nurse Pract. 2016 Jul-Aug; 12(7): 425–432.

[9] Butch WS, et al. Low priority of obesity education leads to lack of medical student’ preparedness to effectively treat patients with obesity; results from the U.S. medical school obesity education benchmark study. BMC Med Educ 20, 23 (2020)