White House Competition Council announcement is a big deal

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By John Breyault, Vice President of Public Policy, Telecommunications and Fraud 

Ask almost any consumer and they will tell you that junk fees are one of the banes of their existence. Not only do these fees add often unexpected costs to the price of goods and services, but they also inhibit competition; contributing to higher prices, worse service, and poorer product quality. Add to this the lost time and aggravation that comes with fighting companies that try to charge these fees and we have a recipe for constant consumer frustration. 

Fortunately, the Biden Administration seems to be hearing these concerns loud and clear. Last week, the White House Competition Council announced a range of executive actions and legislative proposals targeting junk fees and competition concerns that NCL have made a priority for years. These actions build on commitments the Administration made last fall to go after junk fees and other anti-consumer practices.  

So, what is in this announcement for consumers? The short answer is quite a bit. 

First, the Consumer Financial Protection Bureau announced a new rulemaking to close a loophole in the law that allows banks to get away with charging outrageously high fees for late credit card payments. Thanks to this loophole, banks have been able to get away with charging late fees as high as $41. This is big money for the banks. In 2020, banks charged around $12 billion in such fees, representing more than 10% of all fees and interest revenue. Under the new rule, the maximum fee a consumer will be hit with will be $8. This change is expected to save American consumers as much as $9 billion annually. As far back as 2009, NCL was calling for legislation to protect consumers from these “gotcha” fees, so this announcement is great news.  

Second, the Department of Transportation (DOT) will soon propose a rule to prohibit airlines from charging passengers for the “right” to sit next to their young children. Separating children from their parents in the air not only creates safety risks in an evacuation scenario, but it puts kids at increased risk of sexual assault. Back in 2016, Congress directed DOT to review airline family seating policies and, “if appropriate” act. Under the regulation-averse Trump DOT, the agency did the minimum possible to comply with the law by creating a new consumer education web page that described airlines’ family seating policies. This week’s action, however, will ban family seating fees outright, fulfilling a demand that NCL and other advocates have worked towards for years. Thanks to this new rule, parents should soon be protected from having to choose between an affordable seat and their kids’ safety in the air. 

Finally, the Administration called on Congress to pass a Junk Fee Prevention Act to crack down on a range of anti-competitive junk fees. Fees targeted by the legislation would include: 

  • Cell phone and broadband early termination fees – These fees, which can exceed $200, lock consumers into service they may not want or no longer need for years. They also make it harder for new entrants in the marketplace to compete with the big wireless and broadband carriers. 
  • Live event tickets – For more than a decade, NCL has advocated for action to control the fees that can add 50% or more to the price of a concert or sporting event ticket. The Junk Fee Prevention Act would prohibit excessive fees, require that all fees be included in the advertised price, and mandate disclosure of ticket holdbacks that keep more than 50% of tickets for a typical event from ever making it to market. 
  • Hotel resort fees – Resort fees (also called “destination fees”) are increasingly used to hide the actual cost of a hotel room. Instead of being included in the advertised price of a room, sneaky hotel chains charge the fee when a consumer checks out. Not only does this cost consumers billions annually, but it also harms honest hotels that advertise the full price. Thanks to NCL’s advocacy, state and federal regulators have taken aim at these deceptive fees. Now it is time for Congress to step up. 

Taken together, this package of regulatory and legislative reforms show that the Biden Administration is putting companies on notice that their days of raking in billions in profits by nickel-and-diming consumers with unfair and deceptive fees are numbered. NCL, along with our allies in the consumer community, will continue to be on the front line to make sure the Administration and Congress follow through on these ambitious and long-overdue plans. 

Do children in America ever work in deplorable, dangerous, Dickensian conditions? The short answer is “yes.”

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Reid Maki is the director of child labor advocacy at the National Consumers League and he coordinates the Child Labor Coalition.

Most Americans are unaware that the U.S. still has child labor, but 2022 made it abundantly clear that we do, and stories in the news made it clear that conditions can be downright shocking. Here are 10 child labor stories or developments that indicate child labor in the U.S. is not something in the past. Through the Child Labor Coalition, which the National Consumers League founded in 1989, we bring together 39 groups to work collectively to reduce international and domestic child labor and to protect working teens from occupational dangers. Our top 2022 U.S. developments:

  • Minors found working illegally in Brazilian-owned JBS meatpacking facilities in Nebraska and Minnesota. Several children suffered caustic chemical burns, including one 13-year-old. The children worked on the killing floor in cleaning crews, toiling long nights in the graveyard shift and used dangerous pressure-washing hoses while they stood in water mixed with animal parts. Initially, the number of children numbered 31 in Nebraska and Minnesota, but U.S. DOL has suggested the number of illegally employed teens in processing plant cleaning crews may be much larger. The CLC has expressed concerns about teens illegally working in meat processing plants since a large immigration raid in Iowa in 2003 found 50 minors working illegally in the plant.
  • Teens found working in an Alabama factory that supplied parts to Hyundai. In July, labor officials found three siblings, aged 12, 14, and 15, working in an Alabama stamping plant that supplied part to the car manufacturer Hyundai. According to reports, a larger number of minors worked in the factory in recent years. The story drew enormous publicity because factory-based child labor in the U.S. has become rare.
  • The Wisconsin legislature passed a bill to weaken child labor laws by expanding the hours of teen work, which endangers children’s educational development and presents certain health risks. The CLC amplified the work of labor unions on social media, we also wrote a letter to Gov. Tony Evers, urging him to veto the proposed legislation, which he did in February. According to research, high school age workers who toil more than 20 hours a week get lower grades and have an increased risk of dropping out.
  • An estimated 300,000 children still work for wages in agriculture, performing backbreaking labor in searing heat. Currently, federal law allows children who are only 12 to work unlimited hours as long as they are working when school is not in session. Federal legislation which would protect child farmworkers, the Children’s Act for Responsible Employment and Farm Safety (CARE), H.R. 7345, would raise the minimum age of farm work from 12 to at least 14 and lift the age of hazardous work from the current 16 to 18—the same as all other sectors. CARE saw some promising developments in 2022, including the holding of a congressional hearing on the bill—the first since 2009. We also secured over 200 organizational endorsements for CARE and we worked with CLC-members Human Rights Watch, Justice for Migrant Women, and First Focus Campaign for Children to obtain 47 CARE legislative cosponsors.
  • The Children Don’t Belong on Tobacco Farms Act, H.R. 3865 –and its companion bill S.2044—would ban child labor on U.S. tobacco farms where children toil long hours and routinely suffer symptoms of nicotine poisoning such as vomiting, fainting, dizziness, headaches and nausea. In a desperate attempt to keep nicotine off their skin, many teen tobacco workers toil while wearing black plastic garbage bags with holes punched out for their arms and head. Some teens work at great heights and great danger in tobacco drying barns. In the U.S., you have to be 21 to buy cigarettes but at age 12, you can work on tobacco farms and suffer poisoning from toxic nicotine. In this congressional session, we helped secure 32 cosponsors for H.R. 3865—more than double the amount of cosponsors in the 116th.
  • Enforcement of domestic child labor laws in 2022 through mid-November saw an almost 40 percent increase in the number of child workers involved in a violation of child labor rules—nearly 4,000 children, according to reporting by com, using Department of Labor data. Nearly 20 percent of the violations involved teens performing hazardous work.
  • USDOL and state labor agencies frequently found child labor violations among fast food restaurants. Massachusetts Attorney General Maura Healey fined Dunkin’, the donut franchises, $145,000 for over 1,200 child labor violations in 14 stores. U.S. DOL found violations in 13 Pittsburgh area McDonalds restaurants in which teens worked too many hours or too late, as well as a case of a teen doing prohibited hazardous work
  • In September, Human Rights Watch, a CLC member, issued a child rights report card for all U.S. states related to child marriage, child labor, juvenile justice, and corporal punishment, and how well they meet the standards set by the Convention on the Rights of the Child. Alarmingly, only four states earned passing grades: 20 received an “F”; 26 received a “D”; four received a “C” and none received a “B” or and “A.”
  • In July, Massachusetts became the seventh US state to ban entirely child marriage. Like child marriage globally, U.S. child marriage has substantial health, educational, and financial impacts on teens who marry. Most states have broad exemptions that allow teens to marry with the approval of parents or the courts. Massachusetts joins six other states that passed legislation to end child marriage: New York, Delaware, New Jersey, Rhode Island, Pennsylvania and Minnesota. The CLC is a member of the National Coalition to End Child Marriage, headed by the NGO Unchained at Last.
  • The CLC and HRW held a series of meetings with Wage and Hour in 2022 to secure the reopening of the occupational child safety rules for agriculture called “Hazardous Occupation Orders.” These rules have not been updated for agriculture in roughly four decades despite many lessons-learned about farm injuries during that time. We also helped Rep. Roybal-Allard and Rep. David Cicilline (D-RI) draft a letter to DOL Secretary Walsh urging enhanced safety precautions. The letter had 47 congressional signatories.

It is time to give Medicare beneficiaries effective obesity care

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Sally Greenberg

By Sally Greenberg, Chief Executive Officer

“What we’ve got here is a failure to communicate.”

As one of the most recognized quotes of all time, this line from the 1967 movie, Cool Hand Luke, originally addressed the struggle of a person’s will over government control.

Now the line is applicable to another and equally intractable struggle: ending 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.

The struggle is not new. As documented in a 2010 report from the US Surgeon General, the prevalence of obesity began to increase sharply in the 1980s and by the 1990s, public health leaders were calling obesity a national emergency. Now, the obesity rate among adult Americans exceeds 40 percent but 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. Moreover, because obesity is directly linked to over 230 medical conditions, the disease is responsible for an estimated 400,000 deaths a year, costing the nation over $1.72 trillion annually in direct and indirect health costs.

Confronting this growing crisis, in 2012, the United States Preventive Services Task Force (USPSTF) issued guidelines recommending screening all U.S. adults aged 18 and above for overweight and obesity and encouraging clinicians to treat or refer adults with obesity for treatment. Then, in 2013, the American Medical Association officially recognized obesity as “a disease state” on a par with other serious chronic diseases, like type 2 diabetes and hypertension, so healthcare professionals (HCPs) would be motivated to diagnose, counsel and treat obesity. These actions were the impetus for most private insurers, state health plans and state Medicaid programs to cover obesity care to some degree. Moreover, the Office of Personnel Management, which oversees health coverage for federal employees, now requires that insurers cover the full range of obesity treatment options, including intensive behavioral therapy (IBT), prescription weight loss drugs, and bariatric surgery. Additionally. Tri-Care, which covers military personnel and their families, and the Veterans Administration cover AOMs for adults who do not achieve weight loss goals through diet and exercise alone.

This leaves the Medicare program, which today represents the biggest obstacle impeding access to quality obesity care. Outdated Medicare Part B policy 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. Equally troubling, new FDA-approved anti-obesity medications (AOMs) are excluded from Medicare coverage based on a statutory prohibition tracing back to the start of the Part D program. This was in 2003 when fen-phen (the drug combination of fenfluramine and phentermine) controversy raised questions about the safety of weight loss drugs, leading the Centers for Medicare and Medicaid Services (CMS) to classify these medicines as “cosmetic” treatments not eligible for coverage, just like hair loss drugs and cold and flu treatments.

But obesity medicine has improved substantially since 2003. Due to the latest science on obesity as a serious chronic disease, there have been major advances in drug development, including new anti-obesity medications that achieve meaningful weight loss. Yet, while science has moved forward, CMS policy is stuck in the past.

To change this situation, advocates have gone to both Congress and CMS for help. In Congress, public health and aging organizations have been working to pass bipartisan legislation called the Treat and Reduce Obesity Act (TROA) that would end the exclusion under Medicare Part D prohibiting coverage for AOMs and change Medicare Part B rules to permit all qualified health practitioners to provide Intensive Behavioral Therapy (IBT) to Medicare beneficiaries. With CMS, advocates have written to and met with key staffers on several occasions, urging the agency to use its inherent authority to allow flexibility to include drugs under Part D that might otherwise be excluded. One key argument is that CMS has already done this on multiple occasions, ending exclusions for treatments for AIDS wasting and other medical conditions when it is urgent to do so.   And yet, ten years have passed since AMA classified obesity as a chronic disease with no action from either Congress or CMS. In Congress, TROA did not receive a floor vote in the House of Representatives in 2022 despite having 154 co-sponsors and widespread support from medical societies, public health organizations and the aging community. Similarly, CMS has kept the exclusion on coverage for anti-obesity medications, even though the Biden Administration has asked for ways to address systemic racial inequity and obesity is a throughline to better health outcomes.

To start a dialogue that could lead to meaningful action, the National Consumers League and the National Council on Aging decided to change the dynamic. In September 2022, our organizations sent an urgent letter to CMS Administrator Chiquita Brooks-LaSure requesting a meeting so we could speak to her directly on behalf of  about 18 million traditional Medicare beneficiaries whose diagnosis of obesity puts them at risk of other serious conditions. Our letter was well received and on January 17, this meeting took place.

Recognizing that there has been a “failure to communicate” the urgency of the moment, our purpose was to put a human face on seniors with obesity and to convey that bureaucracy and intransigence cannot be the reason that 18 million older adults are denied effective obesity care. As such, we asked Administrator Brooks-LaSure to end the impasse in Part D coverage of FDA-approved AOMs by making access to obesity treatment an agency priority. This action could be the catalyst empowering CMS staff to think differently about obesity and be more open to interpreting the statutory exclusion provision in a way that would permit coverage for anti-obesity medications.

It is too soon to know what the outcome of the meeting will be. We opened a door and pledged to maintain a frank and constructive dialogue with Administrator Brooks-LaSure and staff she designates on the needs of Medicare beneficiaries living with obesity. Our hope is to elevate obesity as a priority for CMS policy and to work with CMS and other stakeholders to remove the access barriers that keep too many Americans from seeking obesity care.

Celebrating the life of the brilliant Rev. Dr. Martin Luther King, Jr.

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Sally Greenberg

By Sally Greenberg, Chief Executive Officer

Each year, I savor the MLK Jr. weekend and holiday because it gives me time to reflect on the impact that Dr. King had. And here in Washington, DC, there’s an annual march along the boulevard named for King that snakes through Ward 8, a largely African American community, with lots of inspiring speeches, marching bands, Double Dutch jump rope jumping, and health fairs along the route. I try never to miss it and today’s march did not disappoint!

King was a towering figure who spoke to all of us as Americans about injustice, racial and otherwise. I loved that he refused to be discouraged by poverty and discrimination, telling his followers “out of the mountain of despair, a stone of hope.”

My “shot in the arm” when I start to get down about my work is King’s famous command “We shall overcome because the arc of the moral universe is long, but it bends toward justice.”

MLK weekend is also a time for reckoning about how racial injustice took root in America—beginning with the enslavement of 12 million Africans in 1619 and continued over hundreds of years, and its debilitating effects throughout generations.

Personally, I’m constantly learning new facts about the many forms racial discrimination has been embedded in our culture. I recently attended a program held in the affluent Friendship Heights section of Washington, DC. A series of posters were displayed in the window of a PEPCO substation describing how the city fathers in the 1920s decided to tear down an entire black neighborhood, uprooting blocks of homes that made up a thriving middle class community in Tenleytown right off Wisconsin Avenue.

These elected officials and members of the business community made plans to build a junior high school and a high school next door for white students. They bulldozed black homes whose children had long attended their neighborhood school, albeit a segregated school. So up went Alice Deal Junior High and Wilson High School. The school for black students closed and the black families, now without homes, moved out. Where they went is a mystery but probably to another part of town. Students at Wilson High, now called Jackson Reed, did the research for this project.

I was so surprised to be learning this history for the first time because 20 years ago, my son attended both schools, and I served as co-President of Alice Deal Middle School. No one had ever discussed this history until now.

Which tells us that we need to have these discussions.

The exhibit showed me that redlining was—and no doubt is—alive and well, and that white leaders, either through malice or indifference, thought nothing of destroying cohesive, vibrant African American communities in hundreds of cities throughout the United States. In doing so, they destroyed the fabric of these communities, their family ties, their civic life, and their children’s futures. These histories must not be forgotten.

What can we do to right the wrongs?

There is no way to compensate the African American community for slavery, for Jim Crow, or pervasive redlining and discrimination. But the bill HR 40, introduced in the House of Representatives for decades, would set up a commission to study the issue of reparations to African Americans. It sounds complicated, but compensation for past wrongs has been doled out many times.  Reparations were paid to Jewish victims of the Holocaust by Germany, to Native Americans in Alaska, to Japanese families interned during WWII, to 911 victims and their families from a taxpayer funded account.

NCL strongly supports HR 40.

While we hope that HR 40 sees the light of day in Congress, in the meantime, let’s not sweep US history under the rug. We can’t heal as a country until we confront the legacy of slavery and the persistent discrimination that followed emancipation. What happened in Washington, DC’s Tenleytown neighborhood in the 1920s is part of that legacy. I’m still learning and hope others are open to learning as well, and in the famous words of Dr. King: “The arc of the moral universe is long, but it bends toward justice.”

Nancy Glick

Alcohol labeling: We’re in it to win it

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Nancy GlickBy Nancy Glick, Director of Food and Nutrition Policy

For historians, 2003 will be remembered as the year that the space shuttle Columbia crashed, scientists finished sequencing the human genome, and the U.S. launched war against Iraq.

But 2003 also marks an important milestone for American consumers. In December of that year, three national consumer organizations – the National Consumers League (NCL), Center for Science in the Public Interest (CSPI), and the Consumer Federation of America (CFA) – first petitioned the federal government to require an easy to read, standardized “Alcohol Facts” label on all beer, wine and distilled spirits products. This sparked a 19-year battle that is finally paying off for the estimated 67 percent of Americans[1] who drink alcoholic beverages.

In 2003, the Nutrition Facts label on processed foods and non-alcoholic beverages had been in use for almost a decade (1994) and many consumers said they frequently or almost always read the label. Thus, public acceptance and use of the Nutrition Facts label created built-in public support for an Alcohol Facts label. In fact, polling NCL commissioned in both 2005 and 2007 showed overwhelming public support for comprehensive alcohol labeling. Now, polling consistently shows that 75 percent of Americans think alcoholic beverages should have standardized alcohol content labels and 72 percent say this labeling will encourage responsible alcohol use.

Even more significantly, not knowing what is in a beer, wine or distilled spirits drink increases the risk for overconsumption of alcohol, a serious and costly public health problem. According to the latest research findings, alcohol is a source of empty calories that contribute to obesity,[2] and can impact blood sugar control in people with diabetes.[3] Additionally, alcohol is a roadway killer accounting for about 30 percent of all traffic crash fatalities in the U.S.,[4] and excessive drinking increases the risk of liver disease, hypertension, cardiovascular disease, alcohol use disorders, certain cancers and severe injuries.[5] Consequently, an estimated 140,000 people in the United States die annually from alcohol- related causes,[6] which is why the cost of excessive alcohol use reached $249 billion in 2010 and is likely higher today..[7]

Based on this documented evidence, the 2003 petition, which was also signed by 73 nutrition/public health organizations and experts, called for a label that gives consumers the needed information to make responsible drinking decisions, such as the serving size, amount of alcohol and calories per serving, the percent alcohol by volume, and the number of standard drinks per container. And yet, the lead federal agency that regulates alcoholic beverages – the Alcohol and Tobacco Tax and Trade Bureau (TTB) – deliberated but failed to take meaningful action for almost two decades.

The arcane process started in 2005 with an advance notice of proposed rulemaking, which produced over 19,000 public comments. In 2006, TTB issued another notice of proposed rulemaking on allergen labeling followed by a notice in 2007 on alcohol and nutrition labeling. Unfortunately, however, TTB allowed these proposed rules to languish, ultimately deciding in 2013 to issue a voluntary rule allowing companies to decide what nutrition and calorie information to disclose – and what to keep hidden. Not surprisingly, many manufacturers opted out of TTB’s program so most alcoholic beverage products on the market remain unlabeled or carry incomplete information.

Even with these setbacks, the consumer community kept up the pressure on TTB because the need for alcohol labeling has only increased. This became apparent during the COVID-19 pandemic when a 2020 RAND study charted a 14 percent increase in alcohol consumption among adults over age 30 in one year.[8] Another national study found that excessive (binge) drinking increased by 21 percent during the pandemic, with the potential for 8,000 additional deaths from alcohol-related liver disease by 2040.[9]

And then, the sand started to shift. Also related to the pandemic, consumer demand skyrocketed for hard ciders, some types of beers, wine coolers and the other low-alcohol drinks sold in supermarkets and convenience stores and what consumers saw were complete alcohol labels on these products. This is because low-alcohol drinks fall under the purview of the Food and Drug Administration, not TTB. Armed with this evidence, NCL leaders met online with Department of Treasury and TTB officials in June 2021 and put TTB in the uncomfortable position of having to explain why often the same manufacturers who must put a standardized content label on brands regulated by FDA don’t bother to do so when their products are under TTB’s jurisdiction.

Not long after this meeting, the Treasury Department conducted its own review and on February 9, 2022, issued a report, Competition in the Markets for Beer, Wine and Spirits, that advanced the importance of labeling information to foster competition within the beverage alcohol industry. The report contains several recommendations, including the recommendation that “TTB should revive or initiate rulemaking proposing ingredient labeling and mandatory information on alcohol content, nutritional content, and appropriate serving sizes.”

This was encouraging news, so NCL doubled down, combining forces with CSPI and the Consumer Federation of America to get TTB to mandate alcohol labeling across the board. Recognizing that public pressure alone will not ensure success, the organizations turned to Congress, hosting briefings for lead staffers of the House and Senate appropriations committees with jurisdiction over TTB’s budget and sending a joint letter to key Congressional leaders from 23 consumer, health/nutrition, and alcohol policy organizations about the need for mandatory alcohol labeling. This led to report language in the draft House and Senate 2023 appropriations bills that encourages TTB to initiate a final rulemaking.

The last step was filing a lawsuit against TTB in the United States District Court for the District of Columbia on October 3, 2022, asking the court to direct TTB to grant or deny the 2003 petition within 60 days. The lawsuit was a gamble, but it worked: on November 17, 2022, TTB accepted the 2003 petition and committed to publish three rulemakings covering mandatory nutrient and alcohol content labeling, mandatory allergen labeling, and mandatory ingredient labeling within the next year.

However, this is not the end of the story. The proposed rules will be accompanied by open public comment periods where we can anticipate that segments of the alcohol industry will be aggressive in fighting robust consumer labeling.  Therefore, NCL will also be actively engaging a wide range of stakeholders to weigh in on behalf of consumers so the American public to have access to standardized and complete labeling information on beer, wine and distilled spirits. It has taken 19 years to get to this point, but our message is clear: alcohol labeling is long past due, consumers overwhelmingly want to see it, and we will stay in the fight until alcohol labeling is a reality.

[1] Gallup. Alcohol & Drinking. July 2022

[2] U.S. Department of Agriculture and U.S Department of Health and Human Services. Dietary Guidelines for Americans, 2020-2025. 9Th Edition. December 2020.

[3] Emanuele NV, et al. Consequences of Alcohol Use in Diabetics. Alcohol Health Res World. 1998; 22(3): 211–219.

[4] National Highway Traffic Safety Administration. Risky Drunk and Drugged Driving Statistics.

[5] U.S. Centers for Disease Control and Prevention. Alcohol and Public Health. Last reviewed April 14, 2022. https://www.cdc.gov/alcohol/fact-sheets/alcohol-use.htm

[6] U.S. Centers for Disease and Control Prevention. Deaths from Excessive Alcohol Use in the U.S. Page last reviewed April 14, 2021. https://www.cdc.gov/alcohol/features/excessive-alcohol-deaths.html . Accessed June 2, 2022.

[7] U.S. Centers for Disease Control and Prevention. Alcohol and Public Health. Page last reviewed April 14, 2022. https://www.cdc.gov/alcohol/features/excessive-drinking.html. Accessed June 2, 2022.

[8] Pollard MS, et al. Changes in Adult Alcohol Use and Consequences During the COVID-19 Pandemic in the US. JAMA Netw Open. 2020;3(9):e2022942.

[9] Julien J, et al. Effect of increased alcohol consumption during COVID-19 pandemic on alcohol-associated lover disease: A modeling study. Hepatology. Vol. 75; Issue 6; June 2022; 1480-1490.

Promising new therapies are giving hope to Alzheimer’s patients and families, so why limit access?

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Sally Greenberg

By Sally Greenberg, Executive Director

For years, Alzheimer’s patients, families, and caregivers have battled a condition with no treatment options. This year alone, an estimated 6.5 million Americans age 65 and older are living with Alzheimer’s.

The good news is, we’ve recently seen remarkable progress in the fight against Alzheimer’s disease as innovative treatments demonstrated the ability to halt disease progression in a major clinical trial and proved to curb cognitive decline. These therapies targeting the buildup of amyloid beta plaque in the brain (one of the telltale signs of Alzheimer’s) have shown promise for so many patients and families facing this fatal diagnosis.

The first such therapy was approved by the U.S. Food and Drug Administration (FDA) in June of last year. This should give us all hope for a brighter future, but this progress may be moot if regulatory barriers hinder patient access.

Rather than ensure broad coverage through the Medicare program – as is the case for nearly every other type of drug that receives FDA approval – the Centers for Medicare and Medicaid (CMS) decided this spring to restrict access to these new Alzheimer’s treatments only to patients participating in approved clinical trials. This puts severe limitations on coverage for an entire class of innovative Alzheimer’s disease treatments, with CMS in direct conflict with the FDA, whose medical experts approved the drug as safe and effective.

In fact, this puts the FDA’s entire accelerated approval pathway in the crossfire, sounding an alarm to millions of patients hoping for medical breakthroughs.

No one is arguing the therapy is a miracle cure, but that’s not how new therapies tend to work. History has shown that when it comes to serious conditions with high unmet medical needs, even small improvements are critical.

Accelerated approval first surfaced during the AIDS crisis, when HIV was a death sentence and there were no treatments. AIDS advocates demanded something – anything — despite minimal benefits “because we have nothing now and no hope.” The first AIDS treatments in the 1980s were grueling regimens with serious side effects, but they had to start somewhere. Today, as medicines have evolved, HIV-positive patients require one pill a day and can live with the disease.

The same is true for Duchenne’s Muscular Dystrophy, a terminal disease that lands young boys in wheelchairs often before they reach 10 years old. Approval of the first drug to treat Duchenne’s met significant controversy in 2016 because it was minimally effective. Yet, the FDA approved it because these patients had no hope. Today there are five treatment options for the disease that slows down the progression and buys time.

And in 2001, a game-changing therapy for chronic myeloid leukemia received approval; the treatment helped to spur innovation in what became targeted therapies for cancers.

The science and medical ecosystem will continue to naturally progress, moving us from zero treatment options to medicines that mitigate symptoms, to treatments that halt disease progression, and eventually, cures. This is true in the Alzheimer’s space, but by limiting access to an entire class of Alzheimer’s treatments, CMS is putting future scientific breakthroughs at risk and creating a ripple effect throughout the entire healthcare system. This new promising drug class will only be available to those with the financial wherewithal to pay thousands of dollars out of their own pockets.

With this precedent, any drug that emerges from the rigorous development pipeline could be deemed too expensive or too early in the discovery phase. CMS acting as the final arbiter on what new treatments will be made available and overriding the scientific judgment of FDA experts should concern all of us.

As we look ahead toward a new Congress, our lawmakers can and should put pressure on CMS to keep pace with the science and give hope to Alzheimer’s patients and families.

Sunshine in Litigation Act introduced in the District of Columbia

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By Sally Greenberg, NCL Executive Director

Here in the District of Columbia, we have a chance to stop the problem of secret settlements with the introduction of the DC Sunshine in Litigation Act (SILA).

The bill, which is scheduled for a hearing before Councilmember Allen’s Judiciary Committee on December 8, would require DC judges to consider public health and safety before granting a protective order, sealing court records, or approving a settlement agreement. Introduced by consumer champion and DC Councilmember Mary Cheh, the bill will ensure that injuries caused by dangerous or unhealthy products do not any longer get sealed away from the public through legal settlements.

As Councilmember Cheh said in her letter to the Council:

“This presumption in favor of public access is especially important in cases that have implications for individuals beyond the parties to litigation—in particular, cases that involve defective products or dangerous environmental conditions that pose a risk to the general public. Unfortunately, it has become increasingly common in cases like these for parties to undermine the public interest, often with a court’s endorsement, either through sweeping confidentiality clauses in settlement agreements or through protective orders issued by the court.

“Court-sanctioned secrecy in such cases can be a matter of life and death. Perhaps the clearest example of this comes from the high-profile litigation related to the opioid epidemic. As early as 2001, individuals and governments began filing lawsuits alleging that opioid manufacturers had misled doctors about the dangers of prescription opioids. However, because judges in these cases required that court records remain under seal, the compelling evidence of the manufacturers’ wrongdoing and of the dangers of opioids uncovered by the litigants was kept from the public for over a decade.”

This issue of secret settlements has a long and sordid history. Typically, a consumer sues a manufacturer for an injury or death that has resulted from a defect in one of the manufacturer’s products. The victim is suing a large corporation that can spend huge sums of money defending the lawsuit and delaying its resolution. Facing a formidable opponent and mounting medical bills, plaintiffs are discouraged from continuing and often seek to settle the litigation. In exchange for monetary damages, the victim is often forced to agree to a provision that prohibits him or her from revealing information disclosed during the case. While the plaintiff gets a respectable award and the defendant can keep damaging information from being publicized, the public remains unaware of critical health and safety information that could save lives.

Bipartisan federal SILA bills have been introduced since the 1990s, with Senator Herb Kohl (D-WI), now retired, being the prime champion, but sadly, none became law. So, we are left to legislate this important consumer protection matter on the state level.

The witnesses who testified before Congress in past years have developed a strong set of stories that underscores the importance of getting these bills passed. A shameful litany of products that have caused injury and death exists but without public scrutiny, the company continues to market and sell the product and keeps the hazards secret. At the hearings in 1990 and 1994, Congress heard testimony about silicone breast implants, adverse reactions to a prescription pain killer, “park to reverse” problems in pick-up trucks, defective heart valves, dangers from side-saddle gas tanks, playground equipment, IUD birth control devices, tires, and portable cribs.

Fast forward to 2011, the Senate Judiciary Committee hearing included many such stories of dangerous products whose hazards remained a secret, including the following.

  • Phenylpropanolamine – Known as PPA, in 1996 caused a seven-year-old boy in Washington State to suffer a sudden stroke and fell into a coma hours after taking an over-the-counter medicine to treat an ear infection. After three years in a coma, he died. The child’s mother sued the manufacturer of the medicine alleging that the stroke was induced by PPA, an ingredient with deadly potential side effects, which has since been banned by the Food and Drug Administration (FDA). Unknown to the public, similar lawsuits in state and Federal courts had previously been filed against the drug manufacturer, but were settled secretly, with the lawyers and plaintiffs subject to restrictive confidentiality orders.
  • Silicone breast implants – Information about the hazards of silicone breast implants was discovered during litigation as early as 1984, but because of a protective order that was issued when the case settled, the information remained hidden from the public and the FDA. It was not until several years and tens of thousands of victims later that the public learned of potentially grave risks posed by the implants.
  • “Park-to-reverse”’ malfunction – For many years, one car company was aware of problems associated with “park-to-reverse”’ malfunction in its pick-up trucks and quietly settled cases stemming from this alleged defect. It was not until years later that the company made a minimal effort to notify original owners by sending stickers alerting them that there was a problem. The stickers made no mention of the potential risks of severe injury or death. Unfortunately, 2.7 million of these truck owners did not receive the warning. One victim was Tom Schmidt. His parents Leonard and Arleen Schmidt testified before the Subcommittee on Courts and Administrative Practice. During their lawsuit they learned that the company had known about the problem as early as 1970 and had quietly settled cases with strict protective orders concealing information about the problem.
  • Bjork-Shiley heart valve – Over the course of several years, Bjork-Shiley heart valves were linked to 248 deaths. The manufacturer insisted on secrecy agreements when settling dozens of lawsuits before the FDA finally removed the valves from the market. The Subcommittee on Courts and Administrative Practice heard testimony from Fredrick Barbee about how court-endorsed secrecy prevented him and his wife from learning about the potential heart valve malfunction and prevented her from getting the appropriate and life-saving treatment she needed when her valve malfunctioned.
  • Dalkon Shield – In 1974, the FDA suspended use of the Dalkon Shield, a popular intrauterine birth control device. The device was linked to 11 deaths and 209 cases of spontaneous abortion. Prior to the FDA’s action, the maker of the device had settled numerous cases with strict confidentiality agreements. The manufacturer even attempted to include agreements with the plaintiffs’ lawyers that would have prohibited them from taking another Dalkon Shield related case.
  • Side-saddle gas tanks – Over the course of several years, one car company quietly settled more than 200 cases brought by victims of fiery truck crashes involving the automaker’s side-mounted gas tanks before the defect became known. It was not until 1993, when General Motors sued Ralph Nader and the Center for Auto Safety for defamation, that lawyers discovered records showing that GM had been sued in approximately 245 individual gas tank pick-up truck cases. The earliest cases had been filed as far back as 1973. Almost all cases were settled and almost all the settlements required the plaintiffs to keep the information secret.
  • Playground equipment – Miracle Recreation Company manufactured and sold a piece of playground equipment called Bounce Around the World. Dozens of lawsuits were brought against the company alleging that it was dangerous and caused serious injuries to young children, including severed limbs and crushed bones. For 13 years, the public and regulatory agencies remained in the dark about the potentially crippling equipment because the company insisted on settling lawsuits conditioned by confidentiality agreements. Approximately 80 children between the ages of four and five were seriously injured before the CPSC learned about the magnitude of the danger and the company recalled the merry-go-round
  • Collapsing decks – On June 16, 2015, shortly after midnight, five Irish J-1 visa students and one Irish-American died and seven others were injured after a balcony on which they were standing collapsed. The group was celebrating a 21st birthday party in Berkeley, California. One of those injured died of her injuries later that year. Building inspectors later found that the wooden supports holding up the balcony had been eaten away by dry rot, even though the structure was less than 10 years old. It subsequently emerged that the contractors who built the complex, Segue Construction of Pleasanton, California, had paid $26.5 million in settlements for previous defect cases, but that this information had not been available to the state construction licensing authority or to clients.

What needs to be done

Time is of the essence in getting this bill enacted in the District of Columbia. Residents of DC will not know what hazards are lurking out there until this bill passes!

Business interests have typically opposed these bills in other states and in Congress. They claim that the Sunshine in Litigation legislation will slow down the courts, discourage settlements, and launch fights over production of documents. In fact, AK, FL, LA, MT, NV, NC, OR, SC, TX, VA, and WA, have all adopted some form of SILA laws and there has been no such collapse of the legal process.

As Councilmember Cheh noted in her letter introducing the bill, “according to the legal advocacy organization Public Justice, there is no evidence that these anti-secrecy laws have discouraged settlements, exposed proprietary interests or trade secrets, or imposed burdens on the courts.”

We look forward to the December 8 hearing and having residents of the District come forward to tell members of the City Council how especially important the Sunshine in Litigation Act is to their families and communities.

Debt cancellation is not Biden’s only aid to borrowers

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By Eden Iscil, Public Policy Associate

If you’ve got student loans like I do, you were probably waiting on President Biden’s student debt cancellation since January 6, 2021. And in late August, President Biden delivered on this promise and announced up to $20,000 in relief for borrowers. While the one-time debt relief has dominated headlines (and rightfully so), Biden’s Department of Education (ED) has implemented a few other noteworthy changes to the federal student loan system—reforms that could save thousands of dollars for millions of borrowers.

Here is a brief (and non-exhaustive) overview of recent modifications to US student loan infrastructure that consumers should keep in mind.

One-Time Debt Cancellation

The application for one-time debt relief is live and can be accessed at https://studentaid.gov/debt-relief/application. The process is 100% free and it takes less than five minutes to complete. This is the only website to which consumers should be providing information to receive debt cancellation. Filers do not need to go digging for old forms, IDs, or income receipts as the only information the application requires is name, date of birth, email, and Social Security number. The ED may contact select borrowers to verify eligibility or request further information, but unless you are contacted, you are good.

Borrowers who earn less than $125,000 a year are eligible for up to $10,000 in debt relief on federally held student loans. This amount increases to $20,000 in cancellation for Pell Grant recipients. Student loans eligible for cancellation must be held by the federal government and disbursed on or before June 30, 2022.

Student loans eligible for Biden’s debt cancellation include:

· Federal Direct Loans (including Direct Subsidized Loans, Direct Unsubsidized Loans, Direct PLUS Loans, Direct parent PLUS Loans, and Direct Consolidated Loans)

· Federal Family Education Loans (FFEL) held by ED

· Federal Perkins Loans held by ED

· FFEL and/or Perkins loans that were privately held but the borrower applied for these loans to be consolidated into a US ED consolidation loan before September 29, 2022

Student loans not eligible for the federal, one-time debt cancellation include:

· FFEL loans not held by ED

· Perkins Loans not held by ED

· Federal loans that were consolidated into a commercial loan

· Student loans held by a private lender

· Student loans held by a state government

Refunds for Loan Payments Made During the Pandemic

If you had paid off your federal loan balance after the pandemic began, you can request a refund for those payments to receive your debt relief. This should be done before applying for the debt cancellation. Also, this should only be done if you paid off your entire balance and would otherwise be unable to claim debt relief. If you still have an outstanding balance equal to or greater than the amount of debt cancellation you are eligible for, you likely do not want to request a refund for your payments.

To get your money back, call your loan servicer directly to ask for a refund on payments you made since March 13, 2020. You should figure out the specific amount of money you are requesting back before contacting your servicer. Additionally, you should have your payment confirmations and receipts nearby throughout this process to ensure that you get a refund for every payment that you want refunded. Then, you should apply for the one-time debt cancellation.

Will Debt Relief Be Taxed?

The one-time debt relief will not be taxed by the federal government, thanks to a provision within the 2021 American Rescue Plan. States, however, can tax debt cancellation as income. This is something that a small number of states have weirdly said they intend to do, while a handful of others may also end up taxing their residents on debt relief by failing to pass legislation in time to exempt the debt cancellation. Most states though will not tax the relief for borrowers.

Federal Payment Pause Ending

President Biden coupled the sweet with the sour by announcing the end of the federal payment pause on student loans alongside the debt cancellation. Since early 2020, student borrowers have not had to pay a cent toward their federal student loans. Now, that payment pause (AKA administrative forbearance) is set to expire on December 31, 2022, it is unclear what the impact will be of an added monthly expense to tens of millions of borrowers (especially as recession worries grow). The two-and-a-half-year pause made clear that these payments are not necessary—Biden, there’s still time to change your mind!

A New Income-Driven Repayment Plan

While receiving a significantly lesser share of the headlines, the new income-driven repayment (IDR) plan will have a significant impact. As opposed to standard repayment plans, which are calculated only from the principal loan balance, the interest rate, and the length of repayment, ED’s IDR plans put a cap on a borrower’s monthly payments proportional to the borrower’s income. Although a few IDR plans have been available for some time, President Biden’s newly announced IDR plan includes enhanced provisions to help prevent debt from becoming unmanageable.

The new IDR plan will place a payment cap at 5% of a borrower’s discretionary income (half of the previous 10%). Additionally, it will raise the threshold for non-discretionary income to 225% of the federal poverty level (the equivalent of $15/hr); borrowers earning less than this amount will not have to make a monthly payment. Furthermore, borrowers with original loan balances of $12,000 or less will have their debt wiped out in 10 years of enrollment in this IDR plan. Lastly, if monthly payments are made, the ED will cover the added interest, ensuring that borrowers’ outstanding balance does not grow, even if their monthly payment is $0 due to their income level.

To enroll in the new IDR plan when it becomes available, or to switch to any of the four existing ones, visit https://studentaid.gov/idr/.

Fresh Start for Borrowers in Default

When the federal payment pause ends on December 31, 2022, the federal government will open their Fresh Start program for one year, allowing borrowers who were previously in default to enter repayment in good standing. The program will not require anything like a lump sum payment or consolidation, but it will remove the many penalties associated with default, such as wage garnishment and the denial of further student aid.

More details on how to enroll when this program opens on January 1, 2023 can be found at https://studentaid.gov/freshstart.

Support for labor unions on the rise

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By Sally Greenberg, NCL Executive Director

The good news is in: 71 percent of Americans support labor unions. This is an all-time high and so encouraging as America celebrates our federal Labor Day holiday.

I’ve had some interesting labor experiences this past week while visiting my sister Jane in Minneapolis. Wednesday, we went by Starbucks and saw that it was closed due to striking workers. We cheered them on and went across to Caribou coffee for our drinks. Then a mailer showed up at Jane’s house addressed to her son, who is a Minnesota school teacher. It read “Stop Funding Racism with Your Union Dues.”

Hmmm, I thought, this is curious. Union dues to fund racism? Sounds fishy to me.

The flyer featured a photo of young African American woman holding teaching materials and said, “Your union really negotiated a contract that undermines the Civil Rights Act.”

I started to dig deeper and learned that the union has negotiated terms that guarantee a diverse work in Minnesota. That is what this group is calling “racism” – racism against white folks apparently. The mailer’s return address was from the “Freedom Foundation,Cincinnati OH”. At the bottom it says “CancelUnionDues.com”.

Yup, you guessed it – it’s a full-on attack on teachers’ unions, which I learned from reading an interview this week with AFT president Randi Weingarten. As part of an on ongoing attack on teachers by the right, this flyer was directed at the Minneapolis Federation of Teachers.

As for the Freedom Foundation mailer, the Maryland State Education Association has this to say about them:  The Freedom Foundation [is funded by] conservative donors, including the billionaire brothers Charles and David Koch, that supports conservative and libertarian organizations.

“When educators are aware of who’s funding [these anti-union campaigns], and what their agendas are, then the charade of these emails falls away pretty quickly,” said Adam Mendelson, a spokesperson for the Maryland State Education Association.

For a shot in the arm about labor rising, I recommend both President Weingarten’s Labor Day blog post along with AFL-CIO President Liz Shuler’s remarks to the Federation of International Football Associations titled Don’t Leave Workers Behind. Young people are excited about organizing unions – they get it – and we must be there to support them.

Legislation is needed to close the environmental health gaps in the Polluters Pay Principle

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By Eric Feigen, NCL Health Policy Intern

Today, more than 40% of Americans live in communities with unhealthy levels of air pollution and every year, millions of deaths and chronic illnesses have been found to be directly caused by various pollutant types. This represents the human cost inherent in environmental degradation. Despite this, policy-makers and regulatory agencies continue to ignore public health consequences when crafting legislation designed to address environmental issues nationwide.

The current approach towards addressing both climate change and environmental damage is rooted in the Polluters Pay Principle (PPP). This commonly accepted practice dictates that those who pollute are responsible for not only abatement costs, but also compensating those adversely affected by their actions. From the Clean Air Act to the more recent Inflation Reduction Act, PPP is the fundamental framework for the majority of environmental legislation in the U.S.

The core mechanism used in PPP is cost-benefit-analysis. Due to the fact that polluters receive a benefit from polluting, in the form of profits, they must correspondingly compensate individuals for the negative externality their pollution creates. For example, paying for a water treatment plant in order to ensure a safe water supply for a community.

One of the most significant externalities of pollution is long-term health conditions. High levels of particle air pollutants are linked to a variety of health issues including asthma, cancer, infant mortality, and premature death. However, as previously mentioned, while 40% of Americans live in places with failing grades in air quality, not all of these individuals have asthma. This illustrates the uncertainty inherent in including the costs to humans’ health in the PPP’s cost benefit analysis. Using this logic, Michigan v. EPA set the precedent for omitting the negative impact polluters have on health from PPP-based calculations.

The Public Health Air Quality Act is one solution to the uncertainty dilemma surrounding pollutants and chronic health conditions. This is because the Act sets thresholds for pollutant levels at the point where the pollutant becomes harmful to human health. In essence, while previous legislation has made polluters pay for the right to pollute, the standards in this legislation will prohibit contamination after the air quality reaches a dangerous level. Furthermore, the Act will also mandate new air pollution monitoring programs and allow the EPA to follow the “precautionary principle”, which errors on the side of safety when determining what levels of pollution may be harmful to humans.

Another arena where PPP must be supplemented is equity. While designed to reduce environmental damage nationwide, PPP fails to address how pollution disproportionately harms Black and Brown communities. An example of this is exposure to PM 2.5, an air pollutant responsible for upwards of 85,000 deaths a year. A recent study highlights that while the Clean Air Act has led to a nationwide decrease PM 2.5 related health conditions, the number of deaths this pollutant causes in communities of color has remained constant.

Climate change and environmental degradation are just as much a public health issue as they are an environmental one. Policy-makers have the obligation to create legislation to supplement PPP policies to mitigate the harm polluters inflict on public health and ensure an equitable approach to environmental regulation and cleanup.