Addressing vaccine hesitancy with community-driven messaging

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Nissa Shaffi

By Nissa Shaffi, NCL Associate Director of Health Policy, featuring an interview with Jens Dakin, Managing Director of AM LLC

After months of vaccine review and approval informing an arduous national vaccination campaign, nearly half of the country has been fully vaccinated against COVID-19. However, despite these efforts, we’ve narrowly missed the national goal of 70 percent of Americans receiving at least one dose by July 4. Even though there is overwhelming evidence in support of the COVID-19 vaccines and their safety, vaccine hesitancy still looms.

On July 8, the NCL health team met with Jens Dakin, Managing Director of Strategic Engagement at AM LLC. AM LLC is a health and research informatics firm that provides public health related, mission critical services in information, communications, and technology to federal, state, and local government clients. Since March 2020, AM has partnered with government agencies to control, isolate, and mitigate the spread of COVID-19 through various community engagement and vaccine quality assurance measures. Below is a snapshot of our conversation.

Nissa: For over 120 years, the National Consumers League has advocated for consumer protections in health care. A big part of our work involves fostering vaccine confidence. We do this through direct consumer engagement, testifying before federal vaccine committees, like the CDC and FDA, and our Script Your Future campaign, where we engage with pharmacy students to increase vaccine uptake. We would love it if you could tell us a little about AM Trace work in vaccine confidence.

Jens DakinJens: Thank you, and nice to meet you both. AM was founded about 10 years ago to provide services to the federal government in research, communications, and healthcare IT. When COVID-19 spread to the US there was a lot of effort by the federal and state governments to keep people safe with COVID-19 threat mitigation, and then to get people to take the vaccine. AM now provides capabilities in five critical services to state and local governments, including staffing and training of public health personnel, technology support infrastructure, public awareness outreach campaigns, stakeholder collaboration. We work with key public servants to help increase capacity pertaining to COVID operations.

Spencer: When you first enter a community, how do you get your foot in the door and begin to understand the specific needs of the community so you can begin to build your campaign strategy?

JD: Ultimately, we don’t like to enter a community cold. We undertake lots of research before hitting the ground to understand the demographics and the local context. It is important for us that our local partners know the area, the people and have the access we need. Whether it’s an African American community, or a White, rural Republican-leaning county, we can make some educated guesses, but we certainly cannot make assumptions about the individuals without the local data and insight. This initial research frames how we empathize and engage with the community, allowing us to develop more credible messages that will resonate better. We don’t tend to advocate mass media campaigns, especially now when there is a need to persuade the vaccine holdouts, because the mass campaigns haven’t worked with them.

NS: On mass vaccination campaigns, I recently came into contact with an old friend that has become increasingly anti-vaccine and cited vaccine lotteries and giveaways as suspect. Do you think that these mass efforts are causing more harm than good?

JD: I believe that they have achieved what they set out to do. They have worked to an extent, to get the people who want to be vaccinated, vaccinated. Unfortunately, there is now considerable distrust in government authority in our society – much of it caused by the spread of misinformation and disinformation. Your friend views her belief as completely rational based on the information she has. For the vaccine holdouts, the message needs to come from a trusted voice and delivered in a non-intrusive way. What we are seeing working in some cases is developing a series of different “micro-interventions”, in the form face-to-face conversations, a series of emails or chats on a group message board. We can even learn lessons from deradicalization programs that have helped to sway people away from the path towards terrorism, where we listen, understand, and engage with empathy.

NS: I really like the idea of “micro-interventions”. Is there a designated period of time you allow yourself in a particular community to test these messages and strategies to see if they land before moving on from that group?

JD: We have to test and adjust all the time. This is an evolving situation. You really just need to remember that when you convince someone to get vaccinated, you’re potentially saving their life. If you keep building that relationship with the community, that can end up going a long way. This is why it’s so important that our local messengers, or canvassers, are all from the communities we are engaging within.

NS: Could you provide some examples of success stories as a result of these interventions?

JD: In NYC, AM’s teams have spoken with over 180,000 residents and as a direct result of our personalized messaging campaigns and direct engagement within [mainly minority] communities, encouraged over 50,000 people to book vaccination appointments. In Anchorage AK, AM’s teams identified, contacted, and built relationships with individuals living in both urban and rural communities with the goal of addressing vaccine hesitancy and booking vaccination appointments. During a single 6-week span of all the unvaccinated people they spoke with, they arranged for nearly 20 percent of them to get vaccinated.

NS: Who do you use in community outreach to build these relationships?

JD: We don’t tend to use professional canvassers. We prefer to recruit and train local canvassers specifically from their community. We speak with the community and individuals to find out who the local influencers are – who they trust. We meet with them and ask them to work with us because need them to become our message multipliers within that community.

NS: The COVID-19 vaccine development and approval process has been as novel as the disease itself. We’ve had the privilege of witnessing science unfold in real time, and along with that, comes a lot of trial and error, as we’ve seen with the momentary pause in the J&J vaccine and the new cases of myocarditis in pediatric populations. How do you mitigate the derailment of messaging, which have been extensively tested, by rise in these developments?

JD: Well, we know that with these holdouts, and these “wait and see” groups, science and facts won’t sway them. The issue is not necessarily about vaccine information, there is a lot of information out there. So, if you’re using science to try to convince people who are ideologically entrenched in one belief or another, they might not understand what you’re trying to say which will turn them off, or they may come up with counter arguments or “counter-facts” that support their own beliefs. They may also exist in information silos, or information echo chambers, that feed them information which confirm their biases. So no, using science will often not work with hold out groups. Which is why we need to find more innovative methods that focus on more accessible and personal benefits of vaccination.

NS: AM trace has a great vaccine confidence toolkit for community leaders which mentions the importance of decision autonomy for patients in vaccine confidence. With public sentiment headed towards vaccine mandates, to possibly issuing vaccine passports– do you see any challenges with that? How can advocates help reduce weariness around these initiatives in a way that is aligned with an individual’s constitutional rights?

JD: As communicators, we should not have any say in developing policy. Whether vaccine mandates are right or wrong, is not an issue I will discuss here. What I will say is that for those employers and institutions who are mandating it, when developing their campaign is that words matter, and the messaging and messengers matter. Employers need to understand that their ‘single’ workforce is made up of many separate communities each with their own concerns and beliefs. You need to understand the behavioral and emotional context that people exist in order to have the best chances of success. The toolkit you mentioned provides communication planners with an overview of what to consider when developing behavior change campaigns. It works very well in the COVID-19 context.

NCL Health Policy Intern Spencer Cramer contributed to this blog.

Don’t forget to take advantage of Healthcare.gov Special Enrollment Period

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By Special Guest Kelley Schultz, Executive Director, Commercial Policy, America’s Health Insurance Plans and NCL Director of Health Policy Jeanette Contreras

More than 2 million Americans nationwide—1.5 million in healthcare.gov states, and an additional 600,000 individuals in states that run their own exchanges—have signed up for coverage during the 2021 Marketplace Special Enrollment Period that extends through August 15. Earlier this year, President Biden launched a new special enrollment period for the 36 states using healthcare.gov—and states that run their own marketplaces followed suit—to help people get health coverage and peace of mind.

Millions of Americans still have the opportunity to enroll in new health insurance plans through the healthcare.gov marketplace, whether they’re uninsured or currently enrolled and wish to switch plans.

The American Rescue Plan Act of 2021 temporarily increased the availability and generosity of the Affordable Care Act’s premium subsidies. As a result, 3.7 million Americans are eligible for expanded financial assistance to make premiums more affordable, including people who didn’t qualify for financial assistance before.

This Special Enrollment Period is a crucial opportunity as the country comes out of the COVID-19 pandemic and the financial hardship experienced by many—a quarter of U.S. adults say they or someone in their household has been laid off, with even more seeing reduced pay. The expanded opportunity for people to enroll in marketplace health plans with enhanced affordability is a major development that will provide much needed assistance to Americans who have faced economic stresses over the past year.

The deadline to enroll in coverage during the healthcare.gov Special Enrollment Period is August 15. States that run their own exchanges may have different deadlines, so consumers should check when their state’s special enrollment period ends. Additionally, current enrollees should return to healthcare.gov to check to access enhanced subsidies to lower their monthly premium and see if they can get additional savings by switching to a high-value plan with lower cost sharing.

The relief bill extended subsidies to 3.7 million people to help lower their monthly premiums and out-of-pocket costs, including people with incomes over 400% of the Federal Poverty Level ($51,040 for an individual or $104,800 for a family of four). Anyone with incomes below 150% of the federal poverty level ($19,140 for an individual or $39,300 for a family of four) is eligible for a high-value plan with a $0 premium and a very low deductible.

These increased subsidies make quality health insurance coverage more affordable for millions of Americans who are encouraged to visit healthcare.gov or their state exchange to see how they can sign up. Health coverage will start on the first day of the month after you select a plan, so it is important that enrollees consider this timeline while making their decisions.

Some SEP resources:

  • For help selecting a plan in any number of languages, you can access a navigator in your area here.
  • More information about the health insurance marketplace and the Special Enrollment Period can be found here.
  • Use a decision tree tool to see if you are eligible for the special enrollment period and get other fast facts here.
Intern Spencer Cramer

Gun violence is a public health crisis—We must treat it like one

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Intern Spencer CramerBy Spencer Cramer, NCL Health Policy Intern

Spencer is a student at Brandeis University, where he is studying Politics and Health: Science, Society & Policy.

Most Americans are all too familiar with our country’s gun violence epidemic. In a typical year, around 40,000 Americans are killed by a firearm, including deaths from homicides, suicides, and accidents. Gun related fatalities in other high-income countries pale in comparison to those of the U.S. Based on 2010 data from the Organization for Economic Co-operation and Development (OECD), Americans were over 10 times more likely to be killed by a gun than people in Australia, a country that once dealt with a similar gun violence problem. This crisis comes in the form of street crime, domestic violence, accidents involving children, and the mass shootings that seem to occur on a multi weekly basis.

Of particular concern has been the rise in gun violence during the COVID-19 pandemic. Last year, 2020, saw a 10 percent increase in gun deaths over the previous year, fueled primarily by a 25 percent rise in homicides and accidental gun deaths. Experts say the recent spike is due to the economic and social stresses of the pandemic, and the numbers are showing no signs of abating as we open back up post-COVID.

What can we do to address this terrible situation? Sadly, the typical debate pits stricter gun control measures against Second Amendment absolutists who believe any gun reform measure to be a threat to their freedom. But those absolutists have outsized power. According to a recent poll, approximately 2 in 3 Americans support stricter gun control measures, with certain policies like enhanced background checks gaining even higher support. Yet attention to the spike in gun violence perversely spikes sales of firearms.

For many years, thoughtful experts have argued that America’s gun violence problem must be viewed as a public health crisis. That approach allows researchers and policymakers to tackle the problem from multiple angles, like understanding why people commit violence, creating safer environments, and implementing common-sense gun violence prevention measures.

The first step to a public health effort should be far-ranging research on gun violence so we can have the proper knowledge to inform policy solutions. Unfortunately, until very recently the federal government was barred from researching gun violence. The Dickey Amendment has been attached to federal spending bills since 1996 and had banned the Centers for Disease Control and Prevention (CDC) from researching gun violence. For the first time, in 2018, the Dickey Amendment was reinterpreted, allowing research to be conducted as long as it does not specifically advocate for gun control policies. After this reinterpretation, Congress proceeded to provide $25 million in funding for gun violence research.

Unfortunately, this funding is a pittance compared with the scope of the crisis. For reference, the National Institutes of Health (NIH) provided $170 million in funding for back pain research in 2019. To meet the scale of the gun violence epidemic, we must dramatically increase funding for research so we can properly direct resources to fight the problem.

We often view gun violence as an issue of criminal justice that narrowly focuses on prosecuting homicides and gun crimes. Many policy solutions therefore involve traditional gun control methods: assault weapons bans, enhanced background checks, and stronger law enforcement tactics to target gun crimes. But by treating gun violence as a public health issue, researchers can undertake a wide-ranging holistic approach that accounts for the numerous societal factors that contribute to gun violence.

A public health approach to the gun violence epidemic—if done well—could be as successful as the campaigns to reduce smoking and automobile accidents. To combat cigarette smoking, we engaged in a multi-pronged strategy involving tobacco taxes, age restrictions, public awareness campaigns, and bans on smoking in many public spaces. These measures have resulted in the adult smoking rate to fall by nearly 70 percent since the 1960’s. Similarly, to deal with vehicular accidents and deaths, we instituted new safety measures in cars and on roads, improved licensing restrictions, enacted tough DUI laws, and better traffic enforcement. As a result of these solutions, deaths from car crashes have fallen dramatically over the last few decades.

Similarly, strategies to combat gun violence can include better mental health services, doctors consulting their patients on gun safety, better firearm safety training, or improved designs of guns that reduce the risk of accidents. It may also involve creating a safer society overall, where lower poverty rates and better economic prospects will naturally lead to less violence. Of course, better gun control policies are needed, but we should think of them as one important part of a larger public health strategy for fighting the gun violence epidemic.

Firearm deaths have shown no signs of letting up—in fact they are exploding. Gun violence has reached horrific levels in the U.S. and tragically destroys many lives. By recognizing this epidemic as a public health crisis, we can address the issue from many different societal perspectives. We need gun control, but we also need stronger mental healthcare, community interventions, poverty reduction, even safer firearms. Any successful public health effort must embrace an all-of-the-above approach. America’s campaigns against cigarettes and automobile deaths should serve as examples to lead our struggle against gun violence. By finally investing in robust research and multiple solutions for gun violence, we can start to eliminate the scourge of gun violence in our society.

Addressing health inequities for LGBTQ communities: During PRIDE month and 365 days a year

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Nissa Shaffi

By Nissa Shaffi, NCL Associate Director of Health Policy

Last summer drew striking parallels to the summer of 1981, when another public health threat raged on: the HIV/AIDS crisis. Exactly 40 years ago, the first cases of AIDS were reported by the Centers for Disease Control and Prevention (CDC). Similar to COVID-19, patients struck by a novel illness desperately sought answers to what was ailing them. An absence of public health guidance led to a culture of paranoia, stigma, and discrimination that ostracized patients already vulnerable and afraid.

It wasn’t until 1985 that President Reagan officially publicly uttered the word “AIDS.” Inaction on part of the Reagan Administration to identify AIDS as a public health emergency, and fear-based messaging targeting the LGBTQ community, egregiously mischaracterized AIDS as a “gay plague.” His reticence up until that point hindered urgent dialogue and impeded critical funding for research for the disease.

Since its initial reporting, more than 32 million people have died from the disease and 38 million currently live with the HIV virus, which can later develop into AIDS. Exacerbated by an ill-coordinated and inadequate response, HIV/AIDS was once a death sentence. Over time, thanks to concerted public health efforts, our society has made great strides in HIV testing, education, and prevention strategies. Presently, with credit to biomedical advancements in treatments, such as antiretroviral therapies, the illness is now a treatable and manageable chronic condition.

As we celebrate these monumental victories in medical ingenuity, we must also acknowledge the vast health inequities that continue to persist for LGBTQ individuals. In 2016, the National Institutes of Health (NIH) formally recognized LGBTQ individuals as a health disparity population. There is mounting evidence that indicates the disproportionate disease burden experienced by the community with regard to mental health, diabetes, hypertension, cancer, heart disease, and exposure to violence.

Research shows that LGBTQ individuals who live in communities with high levels of anti-LGBTQ prejudice die sooner—12 years on average—than those living in more accepting communities. Queer and Trans people of color (QTPOC) face even higher rates of fatal violence, as 44 transgender and gender non-conforming people died to anti-trans violence in 2020.

Due to workplace discrimination against sexual and gender minorities (SGMs), there is a high prevalence of health coverage insecurity among LGBTQ individuals. As Johns Hopkins professor, William Padula, elaborates, “most employer-based healthcare plans are cookie cutter plans, meaning they are the same for everybody. People in the LGBTQ community may need a little more, especially those who are transgender.”

Early data from the COVID-19 pandemic reveals LGBTQ individuals have faced higher rates of unemployment than non-LGBTQ people. Due to the various vulnerabilities experienced by this community, data also shows that LGBTQ people are more inclined to adhere to social distancing, vaccine uptake, and general pandemic-related precautions. This is an interesting revelation when considering the general weariness many LGBTQ people have towards health care providers due to fear of stigma and discrimination.

LGBTQ and QTPOC individuals are identity rich people that often navigate multiple intersections in society. In order to better serve the needs of these patients, health providers and advocates will need to become increasingly adept in providing culturally competent care. Inclusive practices as simple as asking a patient what their pronouns are can help reduce anxiety and foster trust when seeking care. The CDC has culled a comprehensive state-by-state list of LGBTQ affirming healthcare facilities, hotlines, and resources.

June marks PRIDE month, a celebration of the impact the LGBTQ community has made on all aspects of society to assert everyone’s dignity to love and live in alignment with their truth. NCL supports the Equality Act and commends the Administration’s $6.7B investment in the CDC’s Ending the HIV Epidemic initiative that aims to reduce new HIV cases by 2030. To honor the legacy and sacrifices of LGBTQ persons, we need to advance legislative efforts that support access to healthcare, increase funding for research, and encourage meaningful, affirming change for our LGBTQ friends, family, and peers.

Finally, Juneteenth is declared federal holiday

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By Sally Greenberg, NCL Executive Director

Juneteenth, or June 19, is now a federal holiday, thanks to an overwhelming Congressional vote and President Biden’s signing it into law in the past two weeks. And it’s a long time coming. The day marks the emancipation of the last enslaved people in America in Galveston, Texas in 1865, over two years after the Emancipation Proclamation was signed by President Abraham Lincoln.

I’ve heard Juneteenth called Emancipation Day, Freedom Day, and the country’s second Independence Day. It surely is one of the most important anniversaries in our nation’s history.

As a Jew who has observed Passover my whole life, the holiday based on the Book of Exodus celebrating the liberation of Jews from Egypt after 400 years of enslavement, I also celebrate Juneteenth.

As I listened to the radio during a road trip, I heard stories about the newly declared federal holiday. I think most importantly, it’s gotten people talking about a conversation America has never really had: truth and reconciliation about the despicable institution of slavery in the United States and its vestiges: a century and a half of Jim Crow segregation, violence, and rampant, entrenched discrimination against African Americans.

Sadly, this is a conversation too many Americans don’t want to have. Oklahoma passed a law outlawing the teaching of “Critical Race Theory” in state schools. In 2020, President Donald Trump issued an executive order excluding from federal contracts any diversity and inclusion training interpreted as containing “Divisive Concepts,” “Race or Sex Stereotyping,” and “Race or Sex Scapegoating.”

What even is Critical Race Theory? The textbook definition is that CRT acknowledges that the legacy of slavery, segregation, and the imposition of second-class citizenship on Black Americans and other people of color continue to permeate the social fabric of this nation.

Half a dozen other states are considering bills similar to Oklahoma’s. Fox News and other right wing media outlets have tried to use phony scare tactics to discourage discussion of slavery and its generations-long aftermath. The problem is that unless we have those discussions, we will never reckon with the reality that so much of our nation was built on the backs of enslaved people, including the White House. Refusing to discuss this our history of enslavement has a term too: “White Fragility,” defined as white Americans feeling discomfort and defensiveness when confronted with information about racial inequality and injustice. So despite Oklahoma’s law, Biden’s declaring Juneteenth as a federal holiday got people talking—and that’s a good thing.

I liked hearing about Civil Rights Activist Opal Lee, who long advocated for the celebration that started in Galveston to be made a federal holiday.

It was also interesting to learn that there’s a growing discontent within the African American community with symbolic gestures like declaring a federal holiday marking the end of slavery.

On that theme, NCL has endorsed HR 40, a U.S. House bill to set up a commission to study the history of enslavement and reparations to families whose relatives were enslaved. Consider these facts about the legacy of slavery:

We thank President Biden for recognizing that Juneteenth needs to be a federal holiday and was long overdue. Equally important is HR 40, which will provide a way forward for this country akin to the Truth and Reconciliation Commission body established by the South Africa in 1995 to help heal the country and bring about a reconciliation of its people by uncovering the truth in the aftermath of Apartheid.

Slavery is a legacy that all Americans, no matter your racial or ethnic background or when your family arrived in the United States, need to confront. We must not let anger, fragility, backlash, or denial prevent us as Americans from taking the time to really learn about and understand slavery, the Jim Crow laws that followed it, and practices, including lynching, that were used as a tool of terror and white supremacy, and the many lasting repercussions of that terrible history.

Maternal vaccines: Safe for mom and baby

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Nissa Shaffi

By Nissa Shaffi, NCL Associate Director of Health Policy

In the last few weeks, I’ve noticed an old friend from high school, a mother of an infant, consistently posting anti-vaccine content to her social media. Her posts, which were initially mere reflections, have transformed into full-on conspiracy theories about the safety of the COVID-19 vaccines and cast doubts about to the speed of their approval.

At first, I bypassed these posts, not wanting to create tension with an old friend. However, as they became more inflammatory, I realized that she was essentially spreading falsehoods about vaccines. As a public health advocate, I decided to reach out and offer my perspective. I assured my friend that vaccines have gone through rigorous testing and approval by multiple regulatory bodies in order to be deemed safe for widespread use.

She argued that she went through her entire pregnancy without being vaccinated and that she felt mask-wearing and proper hygiene would offer sufficient protection, ending her thoughts with, “maybe I’m crazy, because I think with this big push, that maybe there’s something else in it that the public doesn’t know about.” While my friend may need more and better information to convince her of the benefits of getting vaccinated, it’s important to know what the science says about vaccine safety for expectant or new mothers.

Per the  Centers for Disease Control and Prevention (CDC) guidance, vaccines are an extremely safe and effective method of avoiding communicable diseases. Certain vaccines for pregnant people not only help the mother stay healthy, but the antibodies developed in response to the vaccine penetrate the placenta and offer protection to the unborn child as well. If you are pregnant or planning on becoming pregnant, the specific vaccines you should receive depend on your age, lifestyle, medical conditions, and other factors. You should consult your doctor for the most up to date information.

The CDC recommends that pregnant women receive two vaccines during the gestational period, the inactivated flu (injection) vaccine, and the tetanus, diphtheria, and pertussis or Tdap vaccine. Vaccines that are not recommended during pregnancy include the nasal influenza vaccine, the human papillomavirus (HPV), measles, mumps, and rubella (MMR), and Varicella (chickenpox) vaccines. Some travel vaccines, such as yellow fever, typhoid fever, and Japanese encephalitis are not recommended during pregnancy, but can be administered based on a health provider’s advice.

Vaccines also offer immense protections via lactation. With exception to live virus vaccines like smallpox and yellow fever, most vaccines provide safety to new moms and babies during pregnancy and postpartum via lactation. There is also evidence that breastfed babies respond better to routine pediatric immunizations than those on formula. The CDC has provided a chart of vaccines that are safe for use in lactation.

An even more convincing case for maternal vaccines are the protections offered against COVID-19.  Data  shows that pregnant people are more vulnerable to severe illness with COVID-19. COVID-19 complications during pregnancy include hospitalization, intensive care, or the use of a ventilator or special equipment to breathe, or illness that results in death. Additionally, pregnant people with COVID-19 are at increased risk of adverse pregnancy outcomes, such as preterm birth.

The CDC has found the COVID-19 vaccine to be safe for pregnant and lactating people. The CDC and Food and Drug Administration (FDA) have safety monitoring systems in place to gather data regarding adverse reactions to vaccines. Currently, neither the mRNA (Pfizer and Moderna) nor the viral vector (Johnson & Johnson) COVID-19 vaccines have demonstrated adverse outcomes and have been deemed safe for use in pregnant populations. While more data are needed to assess potential adverse reactions in pregnant individuals before or early in pregnancy, the agencies have vowed to closely monitor that information.

Expectant and new mothers are often faced with a host of difficult decisions about their own health and the health of their babies. Adding to the uncertainty brought on by COVID-19, it’s understandable that people are apprehensive. Through compassionate and non-judgmental conversations, we can help encourage vaccine confidence. Even though my friend seems adamant in her stance, I still see an opportunity to turn the tide. There are so many great resources to help address these concerns, like these ones by the American College of Obstetricians and Gynecologists and the American Academy of Family Physicians. It’s up to everyday immunization advocates like you and me to quell concerns related to vaccine safety to ensure our friends and loved ones are safe.

AAPI Heritage Month: The ‘Model Minority Myth’ and its negative impact on health disparities

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Nissa Shaffi

By Nissa Shaffi, NCL Associate Director of Health Policy

The month of May marks Asian American Pacific Islander (AAPI) Heritage Month, a time where we celebrate, honor, and reflect upon the vast contributions members of the AAPI community have made to our collective society. The AAPI community comprises more than 23 million individuals with origins from 20+ countries, who speak more than 200 languages or dialects, and it is the fastest growing subset of the population.

The AAPI community is one that harbors complex cultural and historical narratives, and varied generational traumas, such as colonialism, war, and the trials of immigration. The AAPI community’s resilience against these factors, while commendable, has contributed to the myth of the “Model Minority,” and has led to a host of social and health inequities. The model minority myth is one rooted in “positive” stereotypes. It is the assumption that deems AAPI individuals as docile, over-achieving, high-earning, and well-educated—denoting AAPI individuals as exemplars to other communities of color. While at face value these qualities are considered desirable, they tend to relegate an astoundingly diverse community to a monolith, resulting in a detrimental impact on their overall wellbeing.

Due to these unrealistic cultural standards, AAPI consumers face a host of internal and external barriers when interacting with the healthcare system, and are often deterred from seeking necessary care. According to a 2019 Substance Abuse and Mental Health Services Administration (SAMHSA) study, AAPIs have the lowest help-seeking rate for mental health services than any racial or ethnic group. Cultural identity, faith, stigma, and fear contribute to lower utilization of mental health services. Other systemic barriers such as disparities in access to culturally competent care also influence underutilization.

AAPIs are also the only racial or ethnic group for whom cancer is the leading cause of death. Despite facing a confluence of cancer risks, due to unique exposures and environmental factors, AAPIs are screened significantly less for cancers compared to other Americans. Because the model minority myth implies that AAPIs are “better off,” screening, public health, and cultural needs are often masked.

This is best demonstrated by the case of Susan Shinagawa, a leading Asian American breast cancer activist and cancer survivor, whose multiple attempts to obtain screening for a suspected lump in her breast was denied, due to the belief that “Asian women don’t get breast cancer.”

The pandemic has illuminated disparities experienced by AAPIs, such as being overrepresented among frontline healthcare workers, increasing risk of exposure to COVID-19. As a result, case fatality among AAPI healthcare workers is three times greater than their white counterparts. AAPIs also tend to live in multigenerational households, more than other minorities, where 29 percent of AAPI households consist of two or more generational families, further increasing risk of household transmission. Approximately 30 percent of AAPIs have limited English proficiency, augmenting overall barriers to care and government relief resources. This disparity has been especially cumbersome for AAPI consumers seeking telehealth, an integral part of our lives throughout the pandemic, where 50 percent of AAPIs with limited English proficiency were less likely to utilize telehealth than individuals with English proficiency.

One way to dispel the model minority myth and encourage greater health equity for AAPI consumers, is to disaggregate racial and ethnicity data in research studies. Disaggregation of data simply means breaking data into smaller, more precise segments. For example, recent United States census data reveal that AAPIs were less likely overall to live in poverty. However, when that data is disaggregated, it shows that Hmong, Bhutanese, and Burmese Americans experience higher incidence of poverty, in contrast to the greater AAPI community. Disaggregating data not only paints a more accurate picture regarding the different social and demographic characteristics that impact varied health statuses within the community, it influences proper allocation of community resources.

Disaggregation of data can only also happen when there is a prioritization of AAPI participants in research. The most illuminating example of this is highlighted by a 2019 study, which revealed that in the past 26 years, only 0.17 percent of the National Institute of Health’s (NIH) budget was allocated to research focused on the AAPI community. These gaps in funding have led to a paucity in data necessary for public health officials and policy makers to meaningfully address AAPI-specific health disparities. A lack of representation in research impacts how AAPI consumers seek, access, and utilize healthcare. It also impacts the greater community public health goals, impacting health equity for everyone.

Greater investments in culturally competent care, AAPI-focused research, and preventive services, such as screening and early intervention, can help improve overall health outcomes for AAPI consumers. The National Consumers League commends the Biden-Harris Administration’s efforts, such as the COVID-19 Hate Crimes Act and the establishment of a subcommittee on Structural Drivers of Health Inequity and Xenophobia, which aim to ensure the federal government’s response to COVID-19 mitigates anti-Asian xenophobia and bias. These measures are critical in addressing structural inequities experienced by the AAPI community, enhancing community health outcomes as a whole.

A step forward on privacy legislation

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By Sarah Robinson, Public Policy Manager

Earlier this month, NCL joined other consumer advocates and industry stakeholders in an event to highlight our consensus that Congress must act to create strong federal consumer privacy rights urgently. We joined colleagues at the 21st Century Privacy Coalition, the Business Software Alliance, and Common Sense Media in calling on Congress to commit to passing comprehensive privacy legislation by the end of the 117th Congress. In a virtual press conference, the groups, along with Rep. Jan Schakowsky (D-IL), Rep. Gus Bilirakis (R-FL), and Sen. Richard Blumenthal (D-CT) agreed that Congressional action to strengthen consumers’ privacy rights is long overdue.   

The Washington Post Editorial Board highlighted our event stating, “the surprising degree of consensus around not only the general necessity of nationwide data protections but also the particulars” makes taking action a “no-brainer.” A recent poll from Morning Consult revealed 80 percent of both Democrats and Republicans said Congress should make privacy a “top” or “important” priority in 2021.

There is bipartisan consensus and agreement from organizations across the spectrum that Congress must act. NCL’s message at the event is that it is now time to craft legislation that gives consumers back control over their personal data. At the event, Rep. Schakowsky, the chairwoman of the House Subcommittee on Consumer Protection and Commerce, announced her intention to hold a series of bipartisan roundtable discussions to examine ways to pass comprehensive privacy legislation. NCL is ready and eager to participate in those conversations to help ensure that a comprehensive bill gives all consumers strong, enforceable privacy rights.  

While passing legislation this Congress is a priority, NCL made clear that we are not going to simply bargain away long held principles on data privacy. NCL believes that in order to protect the privacy and security of consumers’ personal data, the legislation must not preempt stronger state laws, must include strong enforcement provisions, including a private right of action and provide consumers with strong substantive privacy rights. The right legislation will include effective enforcement mechanisms that safeguard privacy rights for consumers and enshrine rules of the road for businesses.  

We applaud Reps. Schakowsky and Bilirakis, and Sen. Blumenthal for their leadership and their commitment to continue fighting for comprehensive privacy legislation. We hope to continue to cooperate with this esteemed group as we work to achieve our shared goal. 

Jeanette Contreras portrait

Como detectar el COVID-19 en casa

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By NCL Director of Health Policy Jeanette Contreras

Tras la efectiva campaña de vacunación, las pruebas de detección serán claves para seguir evitando contagios del coronavirus y resumir a la normalidad. Reconociendo que estamos en buen camino para controlar la pandemia del coronavirus, los estados están eliminando las restricciones de la cuarentena. Pero el 11 de mayo, el director de la Organización Mundial de la Salud (WHO, por sus siglas en inglés) nos alerta que seguimos en una situación peligrosa porque los estudios de la variante que se ha propagado en la India indican que esta se transmite más fácilmente y provoca una enfermedad más grave.

Expertos de salud siguen cuantificando y analizando los casos positivos para vigilar las variantes. Una recomendación importante es seguir administrando las pruebas de detección de COVID-19 aunque las personas sean asintomáticas. En abril, la Administración de Alimentos y Medicamentos de los Estados Unidos (FDA, por sus siglas en inglés) autorizó varias pruebas de uso personal que detectan el COVID-19 y que se pueden comprar en las tiendas y farmacias como CVS, Walgreens y Walmart sin receta médica .

Para los fines de mayo esperamos ver estas pruebas caseras disponibles en todo el país. Los Centros para el Control y la Prevención de Enfermedades (CDC, por sus siglas en inglés) ofrecen consejos sobre cómo usar un kit de recolección y realizarse la prueba en casa. Todas funcionan igual: toma el espécimen de tu nariz o de saliva, envíala al laboratorio por correo, y recibirás los resultados por el internet en un par de días.

Como todavía falta vacunar a los niños menores de 12 años, a las personas que por su religión no han sido vacunados, y personas con enfermedades graves que no se les permite vacunarse, los expertos de salud pública temen no poder eliminar el coronavirus por completo. Una de cada tres personas en el EE. UU. no confía en la vacuna. Y si la mayoría de la población no se vacuna, el COVID-19 será endémica en nuestro país. Solo el país de Israel ha logrado llegar a la inmunidad de grupo- incluso jóvenes de 16 años de edad se han vacunado.

Con acceso a estas pruebas personales, organizaciones y empleadores pueden comprar cantidades de kits de recolección para uso en sus comunidades. Las escuelas y lugares de trabajo ya están estableciendo programas de pruebas para detectar el COVID-19 rápidamente. Para proteger los más vulnerables en nuestras comunidades, todos los casos positivos se deben reportar al departamento de salud del condado en donde vives y al estado para iniciar un rastreo de contactos. Es importante saber dónde se inició el contagiado y con quien ha tenido contacto cercano las personas infectadas.

Aunque el CDC afirma que las personas con la vacuna completa que no presentan síntomas del COVID-19 no necesitan hacerse la prueba de detección después de haber estado expuestas a una persona contagiada con el COVID-19, es muy posible que personas que quieran viajar tengan que mostrar una prueba de detección negativa para entrar a otro estado o país. Mientras que no haya un pasaporte de vacunas, muchos países requirieran que los visitantes demuestren una prueba de COVID-19 negativa para ingresar a su territorio. El CDC tiene un planificador de viajes que las personas pueden utilizar para buscar información sobre el COVID-19 en las comunidades estatales, locales, territoriales y tribales que atraviesen en ruta a sus destinos.

La facilidad de obtener pruebas caseras nos ayudar a detener la propagación del COVID-19 e identificar los orígenes de contagio. Poder hacer un seguimiento de contactos en las comunidades afectadas no solo puede prevenir enfermedad, pero también controlar la evolución de nuevas variantes del COVID-19. La conveniencia de poder hacerse la prueba del coronavirus desde la comodidad de la casa y sin receta de un doctor significa tener un mejor control del bienestar de cada persona en nuestras comunidades.

The decline in COVID-19 testing nationwide could derail pandemic response wins

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Nissa Shaffi

By Nissa Shaffi, NCL Associate Director of Health Policy

COVID-19 testing has been a critical component of the nation’s pandemic response, as health officials monitored the virus’s progression and set policies that supported back-to-school and return-to-work initiatives. Increased testing capacity has enabled our most essential industry sectors to resume activities that continue to carry us through the pandemic. However, as vaccines become more accessible and we surpass initial goals for population-wide immunizations, testing has declined by 35 percent daily since mid-January.

Testing provides a reliable snapshot into the virus’s trajectory that allows for proper allocation of vital resources (e.g., supplies, personal protective equipment (PPE), and medical equipment) and essential personnel. Data from testing rates are also critical for vaccine manufacturers, as they evaluate how the virus is mutating and further efficacy of the vaccine. The uptick in vaccinations, while incredibly promising, may have induced an inflated sense of security and diminished caution towards the virus. However, in the midst of rising variants, the decline in testing may very well be the Trojan horse that derails national efforts to combat the virus.

Testing has also declined in part due to a shift in focus to getting vaccinated. While vaccines are equally important, we need adequate COVID-19 testing for public health surveillance purposes. There needs to be sufficient capacity and public health messaging in place to encourage individuals who have potentially been exposed to SARS-CoV-2, or coronavirus, to get tested immediately.

Dr. Nasia Safdar, Medical Director for Infection Prevention at UW Health, states “we are seeing a decline in testing,” she said. “If we see the numbers continue to decline sharply, at some point then it may not be worthwhile to do widespread testing, but we’re certainly not there yet.” Without these measures, our healthcare system will be rendered unequipped to deal with dormant and emerging threats, like potential outbreaks and continuous mutations of the virus.

There are a couple of strategies that could help us get a hold on precipitous testing rates. It is estimated that a national program for universal mass testing for unvaccinated people would cost a few billion dollars a week—an amount that still presents a cost-benefit when considering potential shutdowns. The American Rescue Plan has appropriated $50 billion for expanded testing, which could help the situation significantly.

Another aspect of the problem is a lack of testing sites. With so many resources currently devoted to expanding vaccination sites at pharmacies and hospitals, people need places to get tested. Greater corporate involvement in the response could be a potential avenue for increasing capacity.

Finally, the Food and Drug Administration (FDA) is working to advance development and approval for over-the-counter (OTC) and point-of-care (POC) tests. Obtaining a greater number of FDA-approved OTC and POC COVID-19 tests could help address issues with logistics and access, and would give schools, workplaces, and communities more options for reliable and accurate screening.

The pandemic is far from over and experts predict that COVID-19 will likely be endemic, meaning it will be detected regularly, even if within small pockets of the population. We need all possible public health interventions at our disposal to ensure that we can effectively limit the spread of the virus and preserve ongoing plans to reopen the economy so that we can start the process to sustainably reintegrate back into society.

Dr. Safdar further emphasized, “the vaccines are great as they are, they’re not 100 percent. There will be a certain number of people that will…contract the illness despite having been vaccinated. It might be a milder condition which is very welcome news, but nonetheless, to make a diagnosis and figure out what treatment is required, you have to get a test.” Testing continues to be a simple, yet powerfully effective measure to prevent the massive spread of COVID-19 and we must persist in our efforts towards early detection.