With growing concerns regarding the impact of emerging COVID-19 variants, testing and genetic sequencing are critical components of broader return-to-work, return-to-school, and public health surveillance efforts.
By Nissa Shaffi, NCL Associate Director of Health Policy
The COVID-19 vaccines have provided much needed doses of hope as consumers eagerly wait for their shots. However — due to competing pressures of managing inadequate supplies, complex state-managed distribution plans, emerging viral variants, and unaddressed health disparities — the national vaccine rollout has fallen short of its intended goals.
To date, more than 40 million have received at least one dose of a COVID-19 vaccine, and 16+ million people are currently fully-vaccinated. On average, providers around the country are administering 1.6 million doses per day. According to experts, 70 to 90 percent of the population will need to be vaccinated if we are to achieve herd immunity and return to normal everyday activities.
The delays in the vaccine rollout have been attributed to variations among states and territories, which have been expected to set their own distribution plans and eligibility criteria. All states have made the vaccine available for healthcare workers, and nearly 43 states and the District of Columbia have expanded their eligibility to include occupation-based vaccination programs. These include members of the non-medical essential workforce, like grocery store employees and police officers.
While vaccine hesitancy among some Americans remains a problem, it’s becoming less of a concern as more and more people are getting vaccinated. COVID-19 has further exposed both vulnerabilities in our infrastructure and social determinants of health — conditions in the environments in which people are born, live, learn, work, play, worship, and age that affect their overall health — that threaten to impede access. Throughout the rollout, vulnerable communities have experienced barriers in booking vaccine appointments due to limited access to broadband, phones, and accessible, affordable transportation.
Vaccine hesitancy and social determinants of health remain the primary obstacles in the rollout process. Going forward, addressing health disparities will be a critical strategy in realizing a successful national response, because — without health equity — the virus will continue to ravage the most vulnerable communities. The National Consumers League supports comprehensive strategies to address the glaring disparities in health and access that COVID-19 has exposed.
For immediate release: February 22, 2021
Media contact: National Consumers League – Carol McKay, carolm@nclnet.org, (412) 945-3242 or Taun Sterling, tauns@nclnet.org, (202) 207-2832
Washington, DC—The National Consumers League (NCL) strongly supports the White House’s latest efforts to ramp up supplies to help expedite the national vaccine rollout plan. The Biden Administration has unveiled plans to mobilize federally-organized distribution channels to ensure Americans get as many shots in arms as possible. President Biden has promised to increase vaccine supply capacity to inoculate *100 million people within the first 100 days of his presidency. The ultimate goal is to have 300 million vaccines (600 million doses) in supply by this summer, which means that at least 50 percent of the population can be partially vaccinated by June. At this rate, we can expect that nearly 90 percent of the population will be fully vaccinated by December.
To meet these demands, the President has invoked the Defense Production Act to ramp up production of vaccines and personal protective equipment (PPE). The Administration has also partnered with the Federal Emergency Management Agency (FEMA), to set up *vaccination sites around the country. To help expand capacity and access to vulnerable communities, President Biden has galvanized *Federally Qualified Health Centers (FQHCs) in the national response. As of February 15, FQHCs will receive supplies of the vaccines to reach individuals most at risk during the pandemic. *Community pharmacies have also been engaged in rollout efforts to broaden access to historically disadvantaged communities, located farther from health services.
NCL appreciates the confidence this administration has placed in community health centers and pharmacies as a critical component in the national COVID-19 response.
“NCL has long recognized the vital role that pharmacists and other health professions play in our nation’s public health, through our decade of hosting the public health outreach campaign, Script Your Future,” said NCL Associate Director of Health Policy Nissa Shaffi. “We commend the Administration’s efforts to augment access to vaccines by leveraging federal and community resources. These newly-forged relationships will bring the nation closer to reaching herd immunity and making strides in achieving health equity.”
*Links are no longer active as the original sources have removed the content, sometimes due to federal website changes or restructurings
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About the National Consumers League (NCL)
The National Consumers League, founded in 1899, is America’s pioneer consumer organization. Our mission is to protect and promote social and economic justice for consumers and workers in the United States and abroad. For more information, visit www.nclnet.org.
For immediate release: February 16, 2021
Media contact: National Consumers League – Carol McKay, carolm@nclnet.org, (412) 945-3242 or Taun Sterling, tauns@nclnet.org, (202) 207-2832
Washington, DC—The National Consumers League (NCL) is proud to support the Black Maternal Health Momnibus Act introduced last week by Representatives Lauren Underwood (D-IL) and Alma Adams (D-NC), Senator Cory Booker (D-NJ), and members of the Black Maternal Health Caucus. The Momnibus includes 12 bills intended to comprehensively address the maternal health crisis that disproportionately impacts Black, Indigenous, and women of color in this country.
Among other measures, the Momnibus calls for improvements to data collection and quality measures to help policymakers better understand the causes of maternal mortality in the United States. NCL has long supported policies to improve maternal health outcomes and advocated for increased access to healthcare for vulnerable populations. NCL’s founders supported early studies on the causes of infant mortality at the Hull House in Chicago in the 1890’s.
“It’s inexcusable for a nation as advanced and well-resourced as the United States to have the highest pregnancy-related death rate in the developed world. Our current healthcare system is failing to protect black women, who are three to four times more likely than white women to die from pregnancy-related complications,” said NCL Director of Health Policy Jeanette Contreras.
“We must also recognize the association between institutional racism and adverse birth outcomes among Black, Indigenous, and women of color,” said Contreras. The Momnibus provides investments to address the social determinants of health that create inequality, such as access to housing, transportation, and adequate nutrition. The legislation also provides funding to the community-based organizations whose work is integral to the support system shown to be effective at improving maternal health outcomes. The legislation further ensures that our most vulnerable moms have access to quality care throughout the pregnancy and during the critical first year of the infant’s life.
“NCL strongly supports the proposal to extend Medicaid and CHIP coverage to 12-months for postpartum care to mothers,” said Contreras. “As well as the legislation’s investments in diversifying the perinatal workforce—critical to providing culturally competent care to Black, Indigenous, and women of color. We enthusiastically call on Congress to support the passage of this comprehensive legislation to address the escalating maternal mortality crisis in this country.”
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About the National Consumers League (NCL)
The National Consumers League, founded in 1899, is America’s pioneer consumer organization. Our mission is to protect and promote social and economic justice for consumers and workers in the United States and abroad. For more information, visit www.nclnet.org.
By Nissa Shaffi, NCL Associate Director of Health Policy
Viruses mutate, and SARS CoV-2—more commonly known as COVID-19—is no exception to that rule. When a virus evolves and mutates from its predominant virus, all that we know about it changes as well. It may be too soon to glean what impact the variants could have on vaccine rollout and efficacy, but the Centers for Disease Control and Prevention (CDC) have provided the detailed evidence they’ve uncovered thus far.
Three *new strains of COVID-19 have been identified presently in four countries: the United Kingdom (B.1.1.7), Japan and Brazil (P.1), and South Africa (B.1.351). These new variants have not been observed to be more deadly, nor have they made people sicker, but one thing they all have in common is that they are more *contagious than COVID-19. Cases for these strains have been found in 33 countries, including the United States.
While the variants all differ slightly in their function, they all possess a specific mutation called D614G — a shared trait that allows these new strains to spread more quickly than the predominant virus. The strain found in the United Kingdom, B.1.1.7, has an estimated *50 percent transmissibility rate, or how quickly it spreads from person to person. Considering ongoing efforts to release new vaccines for inclusion in a national rollout to curb this pandemic, a mutating virus presents unique challenges for an already overburdened healthcare system.
So, what does this mean for travel, testing, vaccines, and so on? The CDC has released a helpful *questionnaire for individuals to consider before they pursue travel, requesting that people delay non-essential travel whenever possible. For those that plan to travel, the CDC has released *guidance which states that individuals traveling via air into the United States must provide proof of a negative test result or documentation of recovery, before boarding their flight. Masks are required on all forms of public transportation, including planes. The CDC has issued *travel notices regarding global travel and each country’s corresponding risk-level.
Scientists are continuously gathering data to determine how the variants will *impact the efficacy of certain therapies, vaccines, and tests. Until further evidence suggests, states are reluctant to enforce stringent lockdown procedures. According to public health experts, the best way to rein in the transmission of these highly contagious variants and to ensure a successful vaccine rollout, is to practice physical distancing and double masking. Layering two masks, as double masking suggests, provide added layers of protection and a better-fitting face covering. Not all masks are equal. To learn more about how to maximize protection against the coronavirus with masks, click here.
As new information emerges, it is important to adjust our safety measures to successfully navigate an ever evolving situation. Consumers are understandably experiencing pandemic-fatigue. Rest assured that the fruits of our collective efforts are closer than they appear, if only we work together towards protecting ourselves and our communities from unnecessary transmission.
*Links are no longer active as the original sources have removed the content, sometimes due to federal website changes or restructurings
For immediate release: February 10, 2021
Media contact: National Consumers League – Carol McKay, carolm@nclnet.org, (412) 945-3242 or Taun Sterling, tauns@nclnet.org, (202) 207-2832
Washington, DC—Today the National Consumers League applauds the Biden’s Administration’s focus on addressing health disparities in its national response to the COVID-19 pandemic.
“The Executive Order on Advancing Racial Equality is a clear and welcome indication that the health and well-being of racial and ethnic minority communities is a priority for this administration,” said NCL Director of Health Policy Jeanette Contreras. “We are also encouraged by the fact that the leadership within the Biden Administration is the most ethnically diverse in our nation’s history. Our nation’s leaders can no longer turn a blind eye to the consequences of racial inequality on the health and economic status of people of color. As a result, the White House Domestic Policy Council is being tasked with applying a racial equity lens to all policies impacting the American people.”
The White House *COVID-19 response plan has called for the establishment of a COVID-19 Racial and Ethnic Disparities Task Force to provide oversight on disparities in the public health and economic response. The Administration has also demonstrated its commitment to racial equity by establishing that the COVID-19 Task Force will become a permanent Infectious Disease Racial Disparities Task Force after the pandemic has ended.
In order to address health disparities and implement an equitable response to the pandemic, advocates argue it is critical that race and ethnicity data be collected. President Biden’s plan calls for the creation of a Nationwide Pandemic Dashboard that provides real-time data on key metrics, such as cases, testing, vaccinations, and hospital admissions. The Centers for Disease Control and Prevention (CDC) will host a public dashboard tracking transmission rates by zip code.
“Current reporting of transmission rates reveals the inconsistent collection of data across the country—data that is incredibly important to decision-making across all aspects of daily life,” said Contreras. For example, school boards across the country rely on *local transmission data to base their decisions on when it’s safe to return to in-person instruction, and city officials rely on this data to decide when to allow indoor dining at restaurants.
Access to testing will remain a vital tool in curbing the pandemic. The Administration has pledged to double the number of drive-through testing sites to alleviate the long lines and shortages that characterized the pandemic in 2020. As remotely-functioning employees return to worksites, there will be an ongoing need for employee testing. President Biden’s plan calls for a Pandemic Testing Board that will ensure the production of testing supplies meets the increased demand. Advocates welcomed the Administration’s swift enactment of the Defense Production Act to produce more vaccination supplies, at-home tests, and personal protective equipment.
“The lack of leadership from the Trump Administration left state and local health officials essentially flying blindly without data to inform their decisions,” said Contreras. “We are facing the consequences today, with evidence that communities of color are being vaccinated at disproportionately lower rates than their white counterparts. The Biden Administration’s COVID-19 plan offers federal officials a comprehensive framework for coordinating an equitable response to the pandemic. The National Consumers League applauds this Administration in its foresight and intention to build trust in communities of color to ensure our most vulnerable populations are not ignored moving forward.”
*Links are no longer active as the original sources have removed the content, sometimes due to federal website changes or restructurings
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About the National Consumers League (NCL)
The National Consumers League, founded in 1899, is America’s pioneer consumer organization. Our mission is to protect and promote social and economic justice for consumers and workers in the United States and abroad. For more information, visit www.nclnet.org.
For immediate release: February 5, 2021
Media contact: National Consumers League – Carol McKay, carolm@nclnet.org, (412) 945-3242 or Taun Sterling, tauns@nclnet.org, (202) 207-2832
Washington, DC—Ten patient and consumer advocacy organizations are demanding that the Small Business Administration claw back nearly a million dollars worth of Paycheck Protection Program (PPP) monies granted to the leading American anti-vaccine groups.
The advocacy organizations sent a joint letter to the U.S. Small Business Administration to express their collective concerns about the fact that, according to the Washington Post, five of the most virulent anti-vaccine organizations—each of which has spread misleading information about the coronavirus—were granted more than $850,000 in loans from the federal PPP.
“Recipients of PPP loans include organizations that engage in conspiracy theories and lies about the safety and efficacy of vaccines generally and in this current environment, have spread misinformation about the COVID-19 vaccine,” stated the letter.
Operation Warp Speed—the federal government’s program to develop, produce, and distribute enough COVID-19 vaccine doses to inoculate 300 million Americans in record time—has cost the American taxpayer roughly $12 billion so far, a number expected to grow more than two-fold at $26 billion.
“It is unfathomable and utterly counterproductive that taxpayer money was awarded to anti-vaccine groups during this national public health crisis,” the groups wrote. They called upon the Small Business Administration and the Biden Administration to investigate and rescind the loans made to the following anti-vaccination groups:
Mercola.Com Health Resources ($335,000)
Mercola.Com Health Resources received an astonishing $335,000 to maintain its operations during the pandemic. In December 2019, Mercola’s founder, Joseph Mercola, authored an article falsely stating that COVID-19 vaccines released via emergency authorization may cause massive side effects. In 2019, Mr. Mercola funded pervasive anti-vaccine efforts while the nation was grappling with widespread spikes of measles cases.
Informed Consent Action Network ($166,000)
The Informed Consent Action Network (ICAN), founded by anti-vaccine activist Del Bigtree received approximately $166,000 in PPP funding. Bigtree has attracted more than 43,000 followers via ICAN, and regularly posts about his skepticism regarding the COVID-19 vaccine, actively downplaying the severity of the pandemic. In a December 2020 interview, Bigtree falsely stated that the COVID-19 vaccines would lead to “vaccine-enhanced diseases” and could cause infertility in women, arguing that the antibodies could potentially attack a woman’s placenta, rather than the spike protein as intended. “If it starts attacking placentas, no one will be able to get pregnant. These are legitimate theoretical issues.”
National Vaccine Information Center (Less than $150,000)
Robert F. Kennedy, Jr., head of the National Vaccine Information Center (NVIC), took to social media in December of 2020 to call into question the safety of the COVID-19 vaccines: “We clearly have a systematic problem when government health regulators have utterly abdicated their responsibility to safeguard public health and refer safety concerns about shoddily tested, zero-liability vaccines to pharmaceutical companies.” Kennedy’s claims regarding the safety of the COVID-19 vaccines have not been validated and are irresponsible.
Children’s Health Defense (Less than $150,000)
NVIC’s Kennedy also founded Children’s Health Defense. His group’s misinformation campaign has contributed to widespread vaccine hesitancy around the country—primarily via social media, stirring up unfounded concerns among the population.
Tenpenny Integrative Medical Center ($72,000)
Tenpenny Integrative Medical Center, spearheaded by physician, Sherri Tenpenny, was awarded $72,000 in PPP loans. Tenpenny is the author of a book titled “Saying No to Vaccines: A Resource Guide for All Ages.” Additionally, Tenpenny’s online forums promote alternative health in lieu of immunization and argue against vaccinations across an individual’s lifespan. One of Tenpenny’s pages was banned from Facebook in December for spreading misinformation.
In the joint letter to the SBA, the advocacy organizations insist that taxpayer dollars be well spent on efforts to vaccinate 60-70 percent of Americans.
“Operation Warp Speed and other related efforts are the right investment. Funding groups with a long history of using junk science to question the safety and efficacy of vaccines is a colossal waste of taxpayer money. Any funds provided to groups that oppose the rollout of COVID-19 vaccines must be returned to the Treasury. PPP funding should not contribute to efforts aimed at undermining our national efforts to fight the SARS CoV 2 virus,” said the groups.
The advocacy organizations signing the letter are listed below:
Alliance for Aging Research
American Immunization Registry Association
American Medical Student Association
American Muslim Health Professionals
Families Fighting Flu
Idaho Immunization Coalition
Kimberly Coffey Foundation
Meningitis B Action Project
National Consumers League
Vaccinate Your Family
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About the National Consumers League (NCL)
The National Consumers League, founded in 1899, is America’s pioneer consumer organization. Our mission is to protect and promote social and economic justice for consumers and workers in the United States and abroad. For more information, visit www.nclnet.org.
For immediate release: February 3, 2021
Media contact: National Consumers League – Carol McKay, carolm@nclnet.org, (412) 945-3242 or Taun Sterling, tauns@nclnet.org, (202) 207-2832
Washington, DC—While the Biden Administration reviews late-hour regulations enacted by the Trump Administration, one important FDA guidance related to CBD deserves further consideration. The U.S. Food and Drug Administration recently withdrew its pending CBD guidance, which the agency had submitted last summer. These highly anticipated guidelines were meant to elaborate on FDA’s CBD enforcement policy as unregulated, untested CBD products continue to infiltrate the consumer market. The FDA has not yet shared a timeline for re-submitting the CBD guidance.
NCL launched Consumers for Safe CBD in 2019 to encourage the FDA to use its existing authority to curtail the proliferation of potentially dangerous, unapproved CBD products and to incentivize CBD research, clinical trials, and the creation of science-based CBD medicines.
NCL Executive Director Sally Greenberg released the following statement in response to the FDA pulling its guidance:
The early weeks of 2021 have brought about many changes – with a new Administration, a new Congress, and continued progress in the fight against COVID-19, there is hope for a safer, healthier future. NCL will continue to do its part to protect consumers and promote public health.
Unfortunately, CBD manufacturers continue to make unsubstantiated medical claims about their products, putting consumers at risk. We remain hopeful that the FDA and the Biden Administration will join us in our efforts to protect consumers from the potential dangers that exist in the current unregulated, wild west CBD marketplace.
NCL urges the FDA to re-circulate an updated proposal that encourages further *research into CBD and the development of science-based CBD medicines and uses the FDA’s authority to regulate the CBD marketplace to protect consumers from CBD products that may put them at risk. Consumers deserve a safer, healthier future. We simply cannot abandon this work now.
To learn more about NCL’s Consumers for Safe CBD campaign, click here. To learn more about FDA’s recent efforts related to CBD, click *here.
*Links are no longer active as the original sources have removed the content, sometimes due to federal website changes or restructurings
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About the National Consumers League (NCL)
The National Consumers League, founded in 1899, is America’s pioneer consumer organization. Our mission is to protect and promote social and economic justice for consumers and workers in the United States and abroad. For more information, visit www.nclnet.org.
For immediate release: February 3, 2021
Media contact: National Consumers League – Carol McKay, carolm@nclnet.org, (412) 945-3242 or Taun Sterling, tauns@nclnet.org, (202) 207-2832
Washington, DC—Washington, DC – The National Consumers League encourages the Biden Administration to continue work on meaningful reforms that help drive down consumer out-of-pocket costs of medicines. The Department of Health and Human Services (HHS) Monday announced the decision to delay a final rule on pharmaceutical rebates that would address critical issues in our healthcare system. The rule aims to lower out-of-pocket costs for consumers by eliminating anti-kickback safe harbors for drug rebates and offering them as direct-to-consumer discounts.
As HHS has demonstrated, the rebates, discounts, and fees negotiated between pharmaceutical companies and pharmacy benefit managers (PBMs) are rarely used to lower consumer out-of-pocket costs for medications. According to the new Senate Finance Committee report, some PBMs receive as much as 70 percent of insulin’s list price—demonstrating that PBMs can increase their profits when list prices are higher. By passing PBM rebates along to patients, savings at the pharmacy counter could be significant.
The following statement is attributable to NCL Executive Director Sally Greenberg:
This delay is a major and preventable setback for consumers. We could be one step closer to significantly lowering out-of-pocket costs, but the government has delayed action. As we continue to face a global pandemic and economic challenges, it’s absolutely essential that we put the interests of consumers above all else—including PBMs.
“We must fix our broken drug pricing process, and HHS has identified one major flaw. The discounts these manufacturers offer to PBMs aren’t passed along to consumers as they should be. And PBMs continue to increase their fees, driving costs up even further. This rule would ensure that consumers—not large, corporate PBMs—save money on the medications they need.
Consumers deserve better, and NCL is committed to encouraging meaningful PBM reforms as soon as possible.
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About the National Consumers League (NCL)
The National Consumers League, founded in 1899, is America’s pioneer consumer organization. Our mission is to protect and promote social and economic justice for consumers and workers in the United States and abroad. For more information, visit www.nclnet.org.
February 1, 2021
Media contact: National Consumers League – Carol McKay, carolm@nclnet.org, (412) 945-3242 or Taun Sterling, tauns@nclnet.org, (202) 207-2832
Washington, DC—Today marks the launch of the tenth annual Script Your Future Medication Adherence Team Challenge, a two-month-long intercollegiate competition among health profession student teams and faculty for creating solutions to raise awareness about medication adherence as a critical public health issue. The Challenge, hosted by the National Consumers League (NCL), is returning to university campuses across the country after nine years of successful student competition and innovation.
The Challenge is an integral part of Script Your Future, a campaign launched by NCL and its partners in 2011 to combat the problem of poor medication adherence in the United States, where nearly three out of four patients do not take their medication as directed.
“Today’s medications are better than ever at treating and curing people, but these treatments can only work if patients know the importance of taking their prescriptions as directed. It takes all members of the health team to make that happen,” said Sally Greenberg, NCL Executive Director. “For 10 years, our Script Your Future Medication Adherence Team Challenge has galvanized student health professionals to explore creative, interprofessional approaches, in encouraging medication adherence. To usher Script Your Future into the next era of improving adherence, we have implemented two new components to the Team Challenge: technology innovation and vaccine adherence. We have been blown away by the ingenuity of our student teams, and we look forward to how they will contribute to their communities in this year’s Team Challenge.”
As the nation continues to navigate the COVID-19 pandemic, Script Your Future teams are encouraged to build their campaigns centering around vaccine confidence to help address hesitancy and mitigate further spread of the coronavirus. Teams are encouraged to tailor their outreach towards chronic health issues including cardiovascular disease, hypertension, diabetes, and respiratory illnesses. Challenge administrators also welcome the inclusion of other disease groups that would benefit from medication adherence-related interventions.
The Challenge is sponsored by the American Pharmacists Association (APhA), the National Association of Chain Drug Stores (NACDS) Foundation, and the National Community Pharmacists Association (NCPA).
Through April 2, inter-professional teams—including student pharmacists, nurses, doctors, and others—will implement creative outreach approaches in their communities to raise awareness and improve understanding about medication adherence. At the end of the Challenge, teams submit entries for review by national partner organizations, and winners are recognized for their efforts to improve medication adherence.
Last year, Team Challenge student health professionals were met with unique circumstances, hurdles, and obstacles as they navigated the historic COVID-19 pandemic, which resulted in school closures, event cancelations, and a host of other challenges. To adhere to social distancing guidelines, dedicated teams pivoted their campaigns and made an impact in other ways. Ultimately, however, more than 80 teams submitted applications; the competition saw engagement from nearly 2,900 future healthcare professionals and volunteers, who hosted more than 250 events in 14 states. Collectively, the teams directly counseled close to 12,000 patients and introduced Script Your Future messaging to more than 430,000 consumers, nationwide.
Since the Team Challenge began in 2011, more than 21,000 future healthcare professionals have directly counseled nearly 87,000 patients and nearly 26 million consumers.
Last year’s national award winner was University of the Sciences: Philadelphia College of Pharmacy. Other schools winning category-specific honors included: Howard University College of Pharmacy; St. Louis College of Pharmacy; Lake Erie College of Osteopathic Medicine School of Pharmacy (LECOM); University of Pittsburgh School of Pharmacy; and Western University College of Pharmacy. Additional participating schools received finalist and runner-up status across a variety of award categories.
To learn about previous winners, visit Script Your Future’s online home.
For more information on the Challenge, visit *the Challenge Community website.
Tweet along with us during the Challenge using #SYFchallenge, and follow the campaign @IWillTakeMyMeds.
*Links are no longer active as the original sources have removed the content, sometimes due to federal website changes or restructurings
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About National Consumers League
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.
About Script Your Future
Script Your Future is a campaign of the National Consumers League (NCL), a private, non-profit membership organization founded in 1899. NCL’s mission is to protect and promote social and economic justice for consumers and workers in the United States and abroad. For more information about the Script Your Future campaign, visit ScriptYourFuture.org. For more information on NCL, please visit nclnet.org.
The work of the National Consumers League is making a difference in people’s lives across the country. Meet some of the consumers touched by our programs.
Read about NCL’s impact
Paige, 55, a Nashville wife and mother of two, answered an employment ad for secret shoppers. Before sending payment to the scammers, she reached out to NCL.
Read about NCL’s impact
A grease fire flared up in Decklan’s kitchen. As his family scrambled and panicked, fearing that the whole house might erupt in flames, Decklan remained calm. He hurried over to the pantry, grabbed some baking soda, and dumped it on the fire quickly extinguishing the blaze.
Read about NCL’s impact
Cincinnati resident Charles, 45, lost his computer business — and health insurance— during a time of economic downturn. A diabetic, Charles was now unable to afford his medication. He stopped taking it which made him seriously ill and put his life at risk.
Read about NCL’s impact
Jeremy is a fast-food worker who has been employed at a number of Chipotle restaurants in New York City. When he was just 20 years old, he took part in an NCL research project that revealed that management practices within the fast food chain were putting workers—and food safety for customers—at risk.
Read about NCL’s impact
By Sally Greenberg, NCL Executive Director
While the COVID-19 pandemic has led to hardship for all Americans, it is clear that people of color have been disproportionately burdened. Across the health care continuum, addressing this disparity has become part of the broader conversation about the history of systemic racism and the underlying social determinants of health that negatively affect the mental, physical, and economic health of individuals and entire communities.
The pandemic has underscored persistent health disparities, and there is growing recognition that representation in research and clinical trials can have a profound impact on health outcomes. A lack of representation from racially and ethnically diverse groups in research and clinical trials have typically led to gaps in data, missing the opportunity to assess the full impact of various treatments and drugs across a range of populations. The collection and use of real-world research and data to inform the potential use, risks, and benefits of medical products and treatments can ultimately lead to better health outcomes, particularly for those who have been underrepresented in the past.
Existing efforts to improve inclusion
Efforts to expand diversity and representation in medical research are underway in Congress. Policymakers are encouraging the incorporation of Real World Evidence (RWE) in drug development through the recent Cures 2.0 draft legislation released by Reps. Diana Degette (D-CO-1) and Fred Upton (D-MI-6). While the status quo limits us from effectively reaching underserved populations, the proposed legislation would allow studies that include RWE for some drugs after they have been approved. At the heart of this issue is a growing appreciation that the same therapy can affect different populations in different ways, which is why Cures 2.0 supports collecting data that more accurately reflects the unique experiences and needs of patients across diverse populations.
Recognizing the potential for RWE in maternal health
The lack of representative research in the field of maternal health is undeniable, and its implications are staggering. The dismal state of maternal care in the United States reflects how our health care system has failed women of color, including by not adequately studying treatment options to prevent maternal morbidity and mortality. The need for RWE is clear when you consider the persistent disparities in health outcomes that plague minority communities.
Preterm birth and its disproportionate impact on women of color is a stark illustration of the need to make progress on representative research in maternal health. Preterm birth is the second-largest contributor to infant death in America today. Despite the tremendous physical, emotional, and financial toll that preterm birth continues to take on our country — disproportionately so on women and families of color — not enough therapeutic tools currently exist to prevent it.
Today, “17P,” the only FDA-approved treatment to help reduce the likelihood of spontaneous, recurrent preterm birth in the United States is at-risk of being withdrawn from the market in all its forms, including the branded product and five generic versions. Unfortunately there is conflicting evidence from two different clinical trials, one representative of a diverse U.S. population and another studied in a largely white population in Europe. It’s not a straightforward comparison. If 17P is withdrawn, the women most affected by preterm birth, predominantly women of color, would be left without an FDA-approved treatment option.
The FDA is considering the path forward, including additional data collection through leveraging RWE from past patient use. The success of the first (approval) trial for 17P in the impacted communities signals the importance of RWE. Continued access to 17P is, at its core, a matter of health equity. Black women must not yet again be left vulnerable to a system that historically has overlooked them.
