UPDATED: National HIV/AIDS Strategy

By: Brandon M. Macsata, CEO, ADAP Advocacy Association

One of the signature domestic policy accomplishments under the Presidency of Barack Obama was the first-ever unveiling of a National HIV/AIDS Strategy in the United States. It might have been decades overdue, but it represented a significant paradigm shift in how public health addressed HIV in this country. On World AIDS Day 2021, President Joseph R. Biden, Jr. renewed the commitment made by his former boss with the release of the updated National HIV/AIDS Strategy for the United States 2022-2025. The news was received by the HIV community with applause.

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Upon issuing the Proclamation on World AIDS Day, 2021, President Biden referenced the updated Strategy by saying: 

"My Administration remains steadfast in our efforts to end the HIV epidemic, confront systems and policies that perpetuate entrenched health inequities, and build a healthier world for all people.  Earlier this year, I reinstated the White House Office of National AIDS Policy to coordinate our efforts to reduce the number of HIV infections across our Nation.  This week, my Administration is releasing an updated National HIV/AIDS Strategy to decrease health inequities in new diagnoses and improve access to comprehensive, evidence-based HIV-prevention tools. This updated strategy will make equity a cornerstone of our response and bring a whole-of-government approach to fighting HIV.

My budget request includes $670 million to support the Department of Health and Human Services’ Ending the HIV Epidemic in the U.S. Initiative — to reduce HIV diagnoses and AIDS-related deaths.  My Administration has also strengthened the Presidential Advisory Council on HIV/AIDS by adding members from diverse backgrounds who bring the knowledge and expertise needed to further our Nation’s HIV response."[1]

According to the updated Strategy, it sets forth bold targets for ending the HIV epidemic in the United States by 2030, including a 75% reduction in new HIV infections by 2025 and a 90% reduction by 2030.[2] It also aligns with the ongoing Ending the HIV Epidemic (EHE) in the United States.

The updated Strategy includes four pillars. They include preventing new HIV infections, improving HIV-related health outcomes of people living with HIV, reducing HIV-related disparities and health inequities, and achieving integrated, coordinated efforts that address the HIV epidemic among all partners and interested parties.[3]

Of particular interest to the ADAP Advocacy Association is addressing health disparities, namely because Black and Hispanic men are being left behind on the declining HIV rates in the United States.[4] The racial and ethnic health disparities are even more evident among men who have sex with men (MSM), according to the Centers for Disease Control & Prevention (CDC).[5]

The CDC's Vital Signs demonstrates the challenges with ongoing racial/ethnic differences in knowledge of status and HIV prevention and treatment outcomes among gay and bisexual men. Approximately one in five (1:5) Hispanic/Latinos and Black/African Americans are unaware of their status. Among gay and bisexual men who could benefit from PrEP, communities of color lag behind their white peers, and they also have lower rates of viral suppression. Additionally, HIV-related stigma disproportionate impacts Black/African American and Hispanic/Latino gay and bisexual men.[6]

Equally important is the updated Strategy emphasizing the importance of the ‘Undetectable equals Untransmissible’ message around HIV treatment as prevention. It reads: "Evidence has definitively shown that people with HIV who achieve and maintain an undetectable viral load by taking HIV medication as directed will not sexually transmit the virus to an HIV-negative partner." 

The ADAP Advocacy Association is among the 1,053 organizations from 105 countries have signed on to share the U=U message. Doing so has complemented our organization's efforts around promoting HIV medication adherence. Much work remains ahead of us, but it just got a bit easier with the updated Strategy.

The updated National HIV/AIDS Strategy is available online here.

[1] White House, The (2021, November 30). A Proclamation on World AIDS Day, 2021. Retrieved online at https://www.whitehouse.gov/briefing-room/presidential-actions/2021/11/30/a-proclamation-on-world-aids-day-2021/
[2] White House, The (2021, December 1). National HIV/AIDS Strategy 2022–2025. Retrieved online at https://www.whitehouse.gov/wp-content/uploads/2021/11/National-HIV-AIDS-Strategy.pdf?utm_campaign=wp_the_health_202&utm_medium=email&utm_source=newsletter&wpisrc=nl_health202
[3] White House, The (2021, December 1). National HIV/AIDS Strategy 2022–2025. Retrieved online at https://www.whitehouse.gov/wp-content/uploads/2021/11/National-HIV-AIDS-Strategy.pdf?utm_campaign=wp_the_health_202&utm_medium=email&utm_source=newsletter&wpisrc=nl_health202
[4] Firth, Shannon (2021, November 30). Black, Hispanic Men Left Behind on Declining HIV Rates in the U.S.. MedPage Today. Retrieved online at https://www.medpagetoday.com/hivaids/hivaids/95943?xid=nl_mpt_DHE_2021-12-01&eun=g1964022d0r&utm_source=Sailthru&utm_medium=email&utm_campaign=Daily%20Headlines%20Top%20Cat%20HeC%20%202021-12-01&utm_term=NL_Daily_DHE_dual-gmail-definition
[5] Centers for Disease Control & Prevention (November 2021). Vital Signs - HIV and Gay and Bisexual Men. U.S. Department of Health & Human Services. Retrieved online at https://www.cdc.gov/vitalsigns/hivgaybimen/index.html
[6] Centers for Disease Control & Prevention (November 2021). Vital Signs - HIV and Gay and Bisexual Men. U.S. Department of Health & Human Services. Retrieved online at https://www.cdc.gov/vitalsigns/hivgaybimen/index.html

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.  

Giving Thanks

By: Brandon M. Macsata, CEO, ADAP Advocacy Association

In 2020, with the introduction of the coronavirus disease 2019 (COVID-19) into our daily lives, it was often said that 2021 would have to be better! It just had to be better, right? Well, life has a tendency of throwing curveballs and this year has been no exception. Arguably 2021 hasn't been much better than last year and in many ways it has been even worse (i.e., 386,233 people have died due to the virus, compared with last year's toll of 385,343).[1] That said, there remains much for which to be thankful...and it seems timely and appropriate to acknowledge them. Today is about giving thanks.

First and foremost, Bill Arnold. This Lion of the modern-day HIV/AIDS advocacy changed my life for the better, literally. Sure, losing him to the Heavens earlier this year has been painful but it also open to door to reflection. Rarely does the world introduce us to a kinder, more gentle, sincere and interesting fella. Bill's time honored stories were as much a staple to him as his notoriously famous fly fishing vest. I miss both. Bill was my colleague, my board co-chair, my client, my mentor...and most of all, my friend. But, I'm giving thanks for having known him!

Bill Arnold, 1938-2021

I'm also giving thanks to Phil, Elmer, Wanda, Jen, Eric, Lyne, Hilary, Lisa, Glen, Jennifer, Theresa, and Guy. As my board of directors, they embody a commitment to excellence. Without their leadership, support and vision the ADAP Advocacy Association wouldn't be the respected organization it is today. This collective group of folks have found a way to govern our group under unanimous consent, which speaks volumes to their character as individuals.

It is hard to imagine our efforts to promote and enhance the AIDS Drug Assistance Programs (ADAPs) would even be possible without our advocacy partners. We complement each other's work each and every day, and for that I'm giving thanks. Among them, Brian Hujdich and everyone at HealthHIV, and Bruce Richman and everyone at the Prevention Access Campaign ("Undetectable = Untransmittable" U=U campaign), and Shabbir Imber Safdar and everyone at the Partnership for Safe Medicines, and of course, Jeffrey R. Lewis and everyone at the Legacy Health Endowment. 

Our funders! It is also hard to imagine where we'd be without their ongoing support, financially and otherwise. Our organization has demonstrated that meaningful partnerships do exist between patient advocacy and the pharmaceutical industry. The dogmatic claims that industry funding is paramount to a bride are not only unfounded, they're also unhelpful to our collective efforts to improve access to care and treatment. Giving thanks to our industry, and non-industry funders, including AbbVie, AIDS Alabama, Avita Pharmacy, Community Access National Network, Gilead Sciences, Janssen Pharmaceutical Companies of Johnson & Johnson, Magellan Rx Management, Maxor National Pharmacy Services Company, MedData Services, Merck, Napo Pharmaceuticals, North Carolina AIDS Action Network, Partnership for Safe Medicines, Patient Access Network Foundation, Patient Advocate Foundation, PayPal Giving Fund, Pharmaceutical Research and Manufacturers of America, Ramsell Corporation, ScriptGuideRx, Theratechnologies, ViiV Healthcare, and Walgreens. Giving thanks to our small donors, too. You could donate to so many other charities, yet you choose to support us!

#YourVaccineIsWaiting. With the ongoing Covid-19 pandemic showing no sign of slowing down, we're giving thanks to the life-saving Pfizer-Biontech, Moderna, and Johnson & Johnson vaccinations, and to all of the people who made it possible. And to that end, additionally we're giving thanks to Josh Robbins, Tez Anderson, Jen Laws, Michelle Anderson, and Jonathan J. Pena, MSW for making possible our educational public service announcements! "Ya'll" (enter Josh's voice) did a great service to our community. 

As this pandemic has stretched to the limits the first responders and front-line healthcare workers we all too often take for granted, it must be said, THEY are the reason we are surviving the coronavirus. Giving thanks to all the pharmacists, physicians, surgeons, nurses, physician assistants, medical assistants, nursing aids, respiratory therapists, anesthesiologists, phlebotomist, behavioral health professionals, social workers, police officers, firemen (and women), and emergency medical technicians.

And most of all, I'm giving thanks to my three-year son, Sebastian. I'm proud to be your Pa Pa! Your presence in my life makes it a litter easier to cope with the craziness that surrounds us.

Finally, giving thanks to YOU for reading our blogs every week. Happy Thanksgiving!

[1] Musto, Julia (2021, November 23). US COVID-19 deaths in 2021 surpass 2020's toll. MSN News. Retrieved online at https://www.msn.com/en-us/news/us/us-covid-19-deaths-in-2021-surpass-2020s-toll/ar-AAR33qm?ocid=uxbndlbing

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.  

Understanding Breakthrough COVID-19 Infections

By: Richard Moscicki, M.D., Executive Vice President, Science and Regulatory Advocacy & Chief Medical Officer with the Pharmaceutical Research and Manufacturers of America (PhRMA)

****Reprinted with permission from the Pharmaceutical Research and Manufacturers of America****

The biopharmaceutical industry continues to work around the clock to research, develop and manufacture vaccines and therapeutics to prevent and treat COVID-19. Already, we’ve made unprecedented progress, and COVID-19 vaccines have protected hundreds of millions of people in the United States and billions around the globe.

Progress in a pandemic is not linear, unfortunately. Breakthrough infections, an infection with a virus after you have been vaccinated, are possible for some individuals even after vaccination. No vaccine – for COVID-19 or any other disease – is 100% effective in preventing infection in every person who receives it. Still, overwhelmingly, vaccines are preventing or mitigating infection, and continue to be our best tool in fighting COVID-19.

Here are a few common questions about breakthrough COVID-19 infections.

How likely am I to get a breakthrough COVID infection?

• In a recent Lancet study, less than 0.2% of the vaccinated individuals reported a breakthrough infection. And those who did suffer a breakthrough infection were older or had underlying illnesses that may make them more susceptible to infection. This study is part of a growing body of research, including from the CDC, showing the significant protections vaccines provide.
• There are preventative health interventions that can significantly boost protection against COVID-19 even when you’re vaccinated, like wearing masks, social distancing and avoiding crowds.
• Overall, the risk of severe illness from breakthrough infection remains very rare.

Source: PhRMA

What is the chance I get hospitalized if I do get a breakthrough case? 

• According to the CDC, if you are vaccinated and develop COVID-19, you will likely experience less severe symptoms than unvaccinated people and are at a greatly reduced risk of hospitalization.
• Another Lancet study found that elderly people with underlying conditions accounted for most severe breakthrough cases and were more likely to need hospitalization as compared to their vaccinated, younger counterparts. This underscores the need for more people to get vaccinated or receive a booster if eligible to reduce the chance of breakthrough infections.
• An Oxford University study confirmed that overall, people who are fully vaccinated and develop a COVID-19 breakthrough infection had lower risks for death and serious complications such as need for mechanical ventilation, ICU admission, life-threatening blood clots and other issues.

If vaccines don’t prevent me from getting and/or spreading COVID-19, why do I need a vaccine?

• People who are vaccinated are less likely to be infected by COVID-19 and less likely therefore to spread the infection and if a breakthrough infection does occur, the symptoms are typically less severe.

The COVID-19 vaccines are safe, effective, and to date, more than 416 million doses of vaccines have been administered in the U.S. But we know our work isn’t done. Protect yourself and your community by getting vaccinated, receive a booster if eligible, and take appropriate precautions based on your personal risk and the level of transmission in your community. Learn more at PhRMA.org/Coronavirus.

Richard Moscicki, M.D. - Dr. Moscicki serves as executive vice president, Science and Regulatory Advocacy and chief medical officer at PhRMA. He joined the organization in 2017 after serving as the Deputy Center Director for Science Operations for the U.S. Food and Drug Administration’s (FDA) Center for Drug Evaluation and Research (CDER) since 2013. While at FDA, Dr. Moscicki brought executive direction of Center operations and leadership in overseeing the development, implementation, and direction of CDER’s programs. Previous positions include serving as Chief Medical Officer at Genzyme Corporation from 1992 to 2011, where he was responsible for worldwide global regulatory and pharmacovigilance matters, as well as all aspects of clinical research and medical affairs for the company. He served as the senior vice president and head of Clinical Development at Sanofi-Genzyme from 2011-2013.

This opinion piece was also published in the November 11th edition of the Catalyst.

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.  

Ending the HIV Epidemic Hindered by Negative Attitudes, Misinformation & Stigma

By: Brandon M. Macsata, CEO, ADAP Advocacy Association

Is the United States' Ending the HIV Epidemic (EHE) being stymied by the American public's long-standing negative views on HIV/AIDS, largely fueled by misinformation and stigma? A recent national survey suggests the answer to that question is an unfortunate yes. The EHE initiative's four science-based strategies - Diagnose, Treat, Prevent, and Respond - apparently have an uphill battle against bigotry, fear and ignorance. 

Less than half of the American public (48%) consider themselves knowledgeable about HIV, which is slightly less than polling done the previous year. One-in-two non-LGBTQ people surveyed (53%) expressed hesitation receiving care from an HIV-positive medical professional, and one-third (35%) held similar attitudes about an HIV-positive teacher.[1] These attitudes reflect opinions held in 2021, not 1981.

Photo Source: GLAAD

The report, “The State of HIV Stigma 2021,” was spearheaded by GLAAD, Gilead Sciences and the Southern AIDS Coalition. Addressing the challenges laid out in the report, GLAAD summarized: "The findings reflect a vast lack of understanding of HIV and how it can be prevented, as well as significant discomfort and unfounded fear about people living with HIV. The Deep South has the highest rates of HIV diagnosis, yet the study reveals that the U.S. South also has some of the highest discomfort levels pertaining to the virus. This is a perfect storm for the perpetuation of misinformation."[2]

So much has been accomplished in the fight against HIV/AIDS since the 1990s with the advent of the highly active antiretroviral therapies (HAART), culminating with the growing acceptance of the science behind U=U ("Undetectable equals untransmissible"). Yet according to the GLAAD report, only 42% knew that someone properly following an antiretroviral drug regimen can’t transmit the virus.[3]  If making U=U foundational in our efforts to end the HIV epidemic is required, then we have much more work to do.

Photo Source: GLAAD

Sadly, among straight, cisgender respondents, half appeared to have closed to door to loving a partner or spouse living with HIV. HALF! Maybe even more troubling is over one-third of the LGBTQ community expressed similar reservations.[4]

The South and Midwest regions of the country reflected higher levels of these negative attitudes, which also correlate with a culture of shame and greater prevalence of HIV criminalization laws.[5] Stigma continues to be a major hurdle in the ongoing efforts to educate Americans about HIV/AIDS. These efforts are further hindered by the incendiary language used by Donald J. Trump about Haitian immigrants and AIDS, or the insensitive, homophobic language used by rapper DaBabby about people living with HIV/AIDS, or the cruel "clean" characterization used by men on gay dating and hookup apps and websites. 

The media isn't without blame here, either. Approximately 6 in 10 Americans get their information about HIV/AIDS from the media.[6] Fortunately, GLAAD's report indicates "56% of non-LGBTQ respondents noted they are seeing more stories about people living with HIV in the media."[7]

"Measuring American attitudes toward HIV and the impact stigma has on people living with HIV" is at the heart of the GLAAD report,[8] and their efforts to monitor the country's mood on this issue is of paramount importance. The success, or failure, of the public policy strategies being employed to end the HIV epidemic will largely depend on combating negative attitudes, misinformation, and stigma.

[1] Kumamoto, Ian (2021, August 26). Half of Americans still don't know shit about HIV — and it's a real problem. MIC. Retrieved online at https://www.mic.com/life/people-know-even-less-about-hiv-than-they-used-to-according-to-new-research-84167181
[2] GLAAD (2021). 2021 State of HIV Stigma Study. Retrieved online at https://www.glaad.org/endhivstigma 
[3] Avery, Dan (2021, August 26). Half of Americans say they’d avoid an HIV-positive doctor. NBC News. Retrieved online at https://www.msn.com/en-us/news/us/half-of-americans-say-theyd-avoid-an-hiv-positive-doctor/ar-AANM01E?ocid=st
[4] GLAAD (2021). 2021 State of HIV Stigma Study. Retrieved online at https://www.glaad.org/endhivstigma
[5] Avery, Dan (2021, August 26). Half of Americans say they’d avoid an HIV-positive doctor. NBC News. Retrieved online at https://www.msn.com/en-us/news/us/half-of-americans-say-theyd-avoid-an-hiv-positive-doctor/ar-AANM01E?ocid=st
[6] McCrea, Megan (2020, April 25). How the Media Shapes Our Perception of HIV and AIDS. Healthline. Retrieved online at https://www.healthline.com/health/media-and-perception-of-hiv-aids 
[7] GLAAD (2021). 2021 State of HIV Stigma Study. Retrieved online at https://www.glaad.org/endhivstigma
[8] GLAAD (2021). 2021 State of HIV Stigma Study. Retrieved online at https://www.glaad.org/endhivstigma

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates. 

HRSA Responds to Advocate Calls to Modernize ADAP Recertification

By: Jen Laws, Board Member, ADAP Advocacy Association, and HIV/transgender health advocate

For years, advocates, clients, case managers, and medical providers have all bemoaned the requirement for clients of the Ryan White HIV/AIDS Program (RWHAP), particularly for the State AIDS Drug Assistance Programs (ADAP), to “re-certify” their eligibility for the program every six months. The process was particularly grueling for clients and providers with difficult to manage fax systems, mail, and document gathering to prove income and residency. The initial qualification process, after all, requires a confirmed HIV diagnosis, documentation of living at or below 400% of the federal poverty level (in general – some states allow for up to 500% FPL), and proof of state residence. It is thorough, as it is cumbersome. The ADAP Advocacy Association has urged the Health Resources & Services Administration (HRSA) to improve the client eligibility recertification process.

Generally speaking, clients also have to prove they’ve sought any other assistance available to them, such as Medicaid or Supplemental Nutrition Assistance Programs, as Ryan White is required to be a payer of last resort. In a program document entitled, “Policy Clarification Notice (PCN) 13-02: Clarifications on Ryan White Program Client Eligibility Determinations and Recertification Requirements”, first implemented in 2013 and last updated in 2019, HRSA issued interpretive guidance. It included a particular timeframe for recertification of client eligibility, but no such timeframe is directed or defined in the statutory language of the program. Earlier this year, we published a blog detailing the ways in which HRSA could and should approach modernizing the recertification process in order to ensure recertification was not a barrier to care for low-income people living with HIV/AIDS.

On October 19th, after years of grassroots efforts to update the guidance, HRSA issued a long-awaited update to this policy, posted as “Policy Clarification Notice (PCN) 21-02: Determining Client Eligibility & Payor of Last Resort in the Ryan White HIV/AIDS Program”, accompanied by a “Dear Colleague” letter detailing some of the changes in the updated policy notice. My phone dinged when this posted…repeatedly. Advocates across the country were celebrating the win in what has long been viewed as an arbitrary and unnecessary barrier to care. Among the interpretive changes around recertification the PCN also reaffirms eligibility for Ryan White programs is not determined based on citizenship status, but residency. Some advocates cheered the acknowledgment and others wish to remain a bit quieter as certain political forces would fail to understand the public health value in ensuring a program meant curb the spread of an infectious disease is actually effective. 

The details provided in the PCN about what should replace the six-month recertification process are limited and that may be a concern for advocates as states evaluate what they may do with greater flexibility to ensure eligibility. HRSA notes recipients (most often states, affected urban areas, and community based organizations) and subrecipients should make every effort possible to reduce the administrative burden on clients and program staff, suggesting automated cross-checks may be available for determining income eligibility. The suggestion is strikingly similar to how many Medicaid programs are set up to cross-check state and federal tax reporting to determine income eligibility without requiring additional effort from clients in many situations. Non-reported income or support will, however, need to be documented with case managers according a recipient’s policies and procedures. HRSA cautions the currently available “self-attestation of no change” policy should not be allowed to go indefinitely. But…one could envision longer term, fix-income ADAP clients not necessarily needing to engage with any particular system of income or residency verification, especially as our population continues to age. HRSA specifically encourages recipients to seek ways to reduce the reporting burden for clients and establish systems of determining eligibility renewal that would verify a person’s eligibility “without requesting additional information from the individual.”

The PCN contains another statement of particular note: “RWHAP recipients and subrecipients should not disenroll clients until a formal confirmation has been made that the client is no longer eligible.” This directive, on its face, directly addresses an unfortunately common happenstance when clients faced situational barriers to gathering documentation or arranging logistics for recertification. It is not uncommon for case managers to face challenges when engaging particularly vulnerable clients, especially those facing houselessness. Just because one cannot get ahold of a client for several weeks doesn’t mean they should be booted off a system of support – rather it means that system needs to try harder to meet that client’s needs.

Photo Source: CU Today

In the space between HRSA’s words and the excitement advocates and clients feel, advocates need to be prepared to fight for and defend changes that reduce these administrative burdens on clients. Recipients are often loathe to make big changes or to make many changes with any kind of speed. The PCN was effective immediately upon publication. For advocates in states and localities are on a less than friendly basis with their advising community members, any lack of definition could easily be abused to impose stricter requirements on clients. Nothing in the PCN specifies any particular minimum standard from HRSA, nor is there an outlined process for community members and advocates to engage HRSA should they believe a recipient’s design does not best benefit their community. In this, HRSA should consider these documents may be directed at recipients but recipients and subrecipients are not the only members of the public engaging. Many advocates are intimately familiar with the rules because they’ve experienced the negative impacts of lax oversight and recipients with…other priorities.

Recipients and advocates alike should be prepared to quickly engage in a process of negotiating change that best suits their communities. This may look like a non-uniform program. I heard the concern of one ADAP that clients who need more personalized help may “fall out of care" due to a lack of standard engagement schedule. I suggested to one ADAP that’s unsure of change, starting with a more generous approach to recertification and issuing small pilot studies for particular client-types (i.e., those who need more “hand-holding” to manage applications for assistance but are fine in every other of care) to design a recertification process that fits the needs of their particular communities. The suggestion of a universal assistance portal in states makes a great deal of sense in a modern world. And, as we’ve seen with Covid-19 vaccine roll-outs, an online-only model doesn’t work for everyone. Benefits navigators will still be needed. 

Whatever the approach to considering this monumental and potentially beneficial change, recipients and sub-recipients should actively engage community members more now than ever. Regardless of the obstacles that may arise moving forward, I’d gently remind administrators and my colleagues, “We don’t have problem clients, we clients with problems and it’s our job to help them” (quote attributed to Joey Wynn, former ADAP Advocacy Association board member providing public comment at a Florida Comprehensive Planning Network meeting).

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates. 

HRSA Needs to Require Covid-19 Vaccine for All Ryan White Grantees

By: Brandon M. Macsata, CEO, ADAP Advocacy Association

"The liberty secured by the Constitution of the United States does not import an absolute right in each person to be at all times, and in all circumstances, wholly freed from restraint, nor is it an element in such liberty that one person, or a minority of persons residing in any community and enjoying the benefits of its local government, should have power to dominate the majority when supported in their action by the authority of the State."[1]

Since 1905, when the Supreme Court rendered its fateful decision in Jacobson v. Massachusetts, it has been the law of the land that state governments have the authority to enforce compulsory vaccination laws. The Court ruled, "it is within the police power of a State to enact a compulsory vaccination law, and it is for the legislature, and not for the courts, to determine."[2] The debate at the time was focused on smallpox vaccinations; today it is the highly-effective Covid-19 vaccinations at issue. Yet today, people living with HIV/AIDS increasingly don't view liberty and public health as being mutually-exclusive.

Jacobson v. Massachusetts

It has been widely accepted that the same authority granted to states to protect public health also extends to the federal government, and as such the ADAP Advocacy Association previously urged the Health Resources & Services Administration (HRSA) to require the Covid-19 vaccine for all Ryan White grantees. Our POZ brothers' and sisters' lives depend on it!

With the U.S. Food & Drug Administration (FDA) granting full approval to the Covid-19 vaccine developed by Pfizer, BioNTech, it is in the public health interest to require the vaccination for any personnel who could encounter clients living with HIV/AIDS. Jeffrey R. Lewis, President & CEO of the Legacy Health Endowment, contends that the precedent established by the Jacobson case extends to the federal government, too. 

"As a nation, we need to have a consistent vaccine policy," said Lewis. "This means all federal agencies and the programs they fund and operate cannot escape their responsibility."

Over one hundred years ago in writing for the Supreme Court's 7-2 majority, Justice John Marshall Harlan argued, "Real liberty for all could not exist under the operation of a principle which recognizes the right of each individual person to use his own, whether in respect of his person or his property, regardless of the injury that may be done to others.”[3]

Justice John Marshall Harlan (Wikipedia)

It is incumbent on all public health professionals - whether they be physicians, nurses, pharmacists, social workers, phlebotomists, or clinicians - working directly with immunocompromised populations to do so with their safety in mind. That is why both the federal and state governments require a litany of recommended vaccinations for frontline workforce, including Hepatitis B, Influenza, MMR, Varicella, Tdap. Global events and current circumstances dictate the Covid-19 vaccination now be among the vaccine requirements for all Ryan White grantees coming into direct contact with their clients.

The policy change is even more paramount considering numerous studies on the intersection between HIV and Covid-19. For example, there is a reduced vaccine response in people with HIV/AIDS. Many studies have shown increased risk factors for hospitalization among HIV patients infected with Covid-19. In fact, one large study finds HIV status increases the odds of dying from Covid-19 by at least 30 percent.

In supporting the policy change, Edward Hamilton, Executive Director of the ADAP Educational Initiative argued, "Our clients deserve to know they're receiving care from a program that puts their health and safety first. HRSA and other federal agencies do indeed have the regulatory and administrative authority to require grantee staff to be vaccinated as a mandatory grant condition to protect our vulnerable populations. HRSA cannot expect clients to follow their guidance if they aren't willing to hold grantees and their staff to the same standard. In addition, grant conditions are not impacted by any state law or governor's executive order."

The number of hospitals and health systems requiring Covid-19 vaccination for employees is growing, according to Becker's Hospital Review. Here are the healthcare organizations that have announced mandates. These hospitals and health systems are clearly abiding by the "First, Do No Harm" principle, which requires that healthcare providers weigh the risk that a given course of action will hurt a patient against its potential to improve the patient’s condition.[4]

Photo Source: The English Farm

Retired Registered Nurse Wanda Brendle-Moss, who is currently enrolled in North Carolina's AIDS Drug Assistance Program, calls the proposed requirement common sense. "Frontline workers are special people because they dedicate their lives to public health and they provide needed supports and services to their patients," submits Brendle-Moss. "Caring for illness is part of their job, but so is protecting them from other potential illnesses or infections. As someone living with a chronic illness and compromised immune system, I'd like to think the people caring for me care enough about me to get vaccinated against Covid-19."

It should come as no surprise that Covid-19 vaccine mandates are widely supported by major health care groups such as the American Medical Association, American Nurses Association, American Academy of Pediatrics, Association of American Medical Colleges and National Association for Home Care and Hospice, among many others. A growing chorus of hospitals and health care systems are now requiring the Covid-19 vaccine. Isn't it time for the state-level public health institutions to do the same, including all Ryan White grantees?

[1] Jacobson v. Massachusetts, 197 U.S. 11 (1905). Retrieved online at https://supreme.justia.com/cases/federal/us/197/11/.
[2] Jacobson v. Massachusetts, 197 U.S. 11 (1905). Retrieved online at https://supreme.justia.com/cases/federal/us/197/11/.
[3] Canellos, Peter S. (2021, September 8). The Surprisingly Strong Supreme Court Precedent Supporting Vaccine Mandates. Politico Magazine. Retrieved online at https://www.politico.com/news/magazine/2021/09/08/vaccine-mandate-strong-supreme-court-precedent-510280
[4] Bailin, Patsy (2018, October 15). Applying the “Do No Harm” Principle to Health Data. Datavant. Retrieved online at https://medium.com/datavant/applying-the-do-no-harm-principle-to-health-data-c3c3d33ad062#:~:text=Traditionally%20applied%2C%20the%20“do%20no%20harm”%20principle%20requires,condition.%20In%20short%2C%20to%20perform%20a%20cost-benefit%20analysis

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates. 

Profiles in Courage Defending Public Health: Anthony Fauci, MD

By: Brandon M. Macsata, CEO, ADAP Advocacy Association

"When you're involved in a race to stop a horrible disease, you always feel you're not doing things quickly enough." – Anthony Fauci, MD

Physician. Scientist. Researcher. Immunologist. Advisor. Husband. Father. And to millions of others... Luminary. Yet, standing at only five feet seven inches, Anthony Fauci, MD – who serves as this nation's Director of the National Institute of Allergy and Infectious Diseases (NIAID) and the Chief Medical Advisor to President Joseph R. Biden, Jr. – is larger than life with many of today's advocates working in public health. Dr. Fauci didn't enter his professional career seeking the headlines or interviews or fame, but two ongoing global pandemics sealed his fate. 

The intersection between the HIV/AIDS epidemic and the Covid-19 pandemic has become the new normal. Although one has sidetracked the progress that was being made on the other, there are undeniable nuances linking the two of them. The origin of the virus... slow initial governmental response... media-driven hyperbole... fearmongering Southern Republican Senators... hope-inspiring clinical trials... advent of the new medications/vaccines, and oh yeah... Anthony Fauci.

Maybe equally as important, Fauci survived four years of the Trump presidency. That in and of itself is significant considering the guy who lost the 2020 presidential election spent most of his tenure in office attacking science, undermining proven public health programs, and belittling (or firing) career public servants. Yet, it is hard to imagine the public health landscape during either crisis without Fauci's steady hand.

Photo Source: Jabin Botsford / The Washington Post via Getty Images

The HIV community's Old Guard has come to respect Fauci, in fact, despite a bumpy start back in the 1980s. The HIV community's New Generation credits Fauci for saving their lives, ironically, before many of them were even born. There are striking similarities between the two global pandemics. Forty years ago, one president said nothing, literally, as the Old Guard was forced to bury their friends, family, and neighbors. Body bags darkened the evening broadcast news. Back then, loud mouths and misinformation strangled the science. Last year, another president said absolutely crazy things (i.e., bleach, anyone?) as everyone witnessed the world turning upside-down. Again, not one evening news broadcast ended without images of the body bags. And yet again, loud mouths and misinformation strangled the science. Sadly both times, millions died...needlessly. Fortunately, then and now, people like Anthony Fauci were working in public service and dedicating their lives to public health.

National Geographic's latest project, "FAUCI: FROM THE FRONTLINES OF ONE PANDEMIC TO THE HEADLINES OF ANOTHER," dissects the calling to public service that has defined Fauci's career. The film turns the clock back to AIDS' darkest days, which Fauci reveals that he has post-traumatic stress syndrome from it. The unprecedented portrait of one of America’s most vital public servants also reveals Fauci's clairvoyance:

"I wrote an article in 1981 saying that if we think this disease is going to stay confined to a discreet group of people and it's not going to explode, we're kidding ourselves," Fauci said. "A major journal rejected it and said I was being too alarmist."[1]

Photo Source: Disney+

The documentary also provides a glimpse into how Fauci's commitment to science didn't ignore the concerns being expressed by the patient advocacy community. It features ACT UP's Peter Staley, who evolved from fierce foe to personal friend of the 50+ year public health official. Such relationships between activists and government yielded positive changes, including the future design of our clinical trials.

In fact, Mark S. King brilliantly captured the blissful dynamics of the Staley-Fauci friendship last year in his My Fabulous Disease blog, Peter Staley Just Unmasked Anthony Fauci and It Is Fabulous. "Staley, an icon of AIDS activism, must have done some awfully persuasive cajoling to convince his one-time nemesis to chat with him in such an unguarded way," King wrote at the time.[2]

What is probably the most striking take-away from the new National Geographic film, or even the aforementioned Staley interview, is the unlikeliness that strange bedfellows will emerge between Fauci and his present day critics over Covid-19. The sad truth is the right-wing media, namely FOX News and ONE America News, have vilified the man who has dedicated his life to saving the lives of others... including my own. The result is too many politicians have opted to put ambition-driven politics over their country.

Starting in the 1980s, AIDS defined a generation. Starting in 2020, Covid-19 nearly brought the world to its knees. Despite the challenges from both public health crises, Dr. Anthony Fauci has worked tirelessly to ensure neither one robbed us of even more of our family, friends, and neighbors. Fauci didn't do it for the famed Bobblehead or the catchy Hashtag (#fauciouchie). He did it for us!

[1] Fiore, Kristina (2021, October 5). New Fauci Documentary: 'You Don't Get Intimidated' — Anthony Fauci gets personal in new film, opens up about Trump admin and history repeating. MedPage Today. Retrieved online at https://www.medpagetoday.com/special-reports/exclusives/94864?xid=nl_mpt_DHE_2021-10-06&eun=g1295317d0r&utm_source=Sailthru&utm_medium=email&utm_campaign=Daily%20Headlines%20Top%20Cat%20HeC%20%202021-10-06&utm_term=NL_Daily_DHE_dual-gmail-definition
[2] King, Mark S. (2020, September 26). Peter Staley Just Unmasked Anthony Fauci and It Is Fabulous. My Fabulous Disease. Retrieved online at https://marksking.com/my-fabulous-disease/peter-staley-just-unmasked-anthony-fauci-and-it-is-fabulous/

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.