The Passing of Our Friend, Bill Arnold

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

Photo L - R: Bill Arnold, Brandon Macsata, Michael Pickering

At approximately 8:06 PM EST last evening, William "Bill" Arnold left this Earth as gracefully as he lived his life on it for his eighty-three years. 

Bill passed away peacefully in his home surrounded by Michael (his partner, seen above), Sally (his sister), Sue (his niece), and Lieden (his dog). It is truly a great loss for us, and our community, but at least Bill didn't suffer. Michael did get to share a nice moment with Bill in the morning watching the news while holding hands, as well as spending part of the day listening to Judy Collins. 

We will keep you updated as more details are shared by Michael about services for him.

In the meantime, we invite you to read the recent 2020 tribute written by Jeffrey R. Lewis: 

The Lion of Modern-Day HIV/AIDS Advocacy

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. 

Veterans Linkage to Care: Perspectives on HIV, Viral Hep, Opioids & Mental Health

By: Jonathan J. Pena, MSW, Licensed Clinical Social Work Associate (LCSWA)

*** Reprinted with permission from the Community Access National Network (CANN) ***

Approximately 8 percent of the U.S. population are Veterans, numbering over 18 million Americans with most of them being males and older than nonveterans. But those demographics will change in the coming years, with significant increases in ranks among women and minorities (Schultz, 2017). As a society, we tend to view these men and women formerly in uniform as larger than life figures capable of overcoming almost any odds. The reality, however, is there are numerous ongoing public health challenges faced by Veterans in this country once discharged from the military – among them HIV, Hepatitis C, opioid dependence, and mental health conditions. As a society, don't we owe it to them to provide the most timely, appropriate linkages to care and treatment?

To view the full opinion piece, infographic and video, go to: https://www.hiv-hcv-watch.com/blog/veterans-linkage-to-care.

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.

Could the Tide be Turning on HIV Criminalization Laws in the United States?

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

The ongoing Covid-19 pandemic has revealed a longstanding truth well-known to the public health community, but often ignored by elected so-called 'leaders' and the general public. That is, public health is grossly underfunded in the United States. The federal share of public health expenditures dropped from 45% to 15% over 50 years.[1] Yet, rather than making the needed investments to address societal problems, or untreated cognitive and mental disabilities, or unfavorable social determinants of health, we leverage the vast criminal justice system to 'fix' them. There is probably no better example than the criminalization of HIV/AIDS in this country, dating back to the AIDS hysteria perpetrated by the late, bigoted Senator Jesse Helms. But evidence suggests that the tide is turning on these criminalization laws.

According to the Centers for Disease Control & Prevention (CDC), 37 states have HIV criminalization laws, including HIV-specific exposure laws, general communicable disease exposure laws (which could include HIV), and/or sentence enhancement laws specific to HIV. As of 2020, there were only 11 states with no specific criminalization laws.[2]

Starting in the 1990s, advances in medicine and the advent of the antiretroviral (ARV) therapies revolutionized the fight against HIV/AIDS; now, they are having a positive impact (pun intended) in the fight against HIV criminalization laws. The driving force behind it is Undetectable = Untransmittable, or U=U. In other words, a person living with HIV who is on treatment and has an undetectable viral load cannot transmit HIV through sex. According to the Prevention Access Campaign, "The science is clear. People living with HIV can feel confident that if they have an undetectable viral load and take their medications as prescribed, they cannot pass on HIV to sexual partners."[3]

Since 2014, several states have modernized their HIV criminalization laws - including California, Colorado, Iowa, Michigan, and North Carolina. With respect to these five states, CDC states: "Changes include removing HIV prevention issues from the criminal code and including them under disease control regulations, requiring intent to transmit, actual HIV transmission, or providing defenses for taking measures to prevent transmission such as viral suppression or being noninfectious, condom use, and partner PrEP use."[4]

Photo Source: Prevention Access Campaign

U=U has changed the HIV criminalization paradigm, evidenced by three more states turning the tide on these outdated laws. Joining the chorus for change are Illinois, Missouri, and Nevada. The following news reports provide an excellent analysis on the driving force behind the changes in each state:

• Pritzker Signs Bill Making Illinois Second State To Repeal HIV Criminalization
• Missouri Loosens Laws Criminalizing HIV Transmission After 30 Years Of 'Faulty Assumptions'
• Nevada Just Struck Down Its Outdated, Discriminatory Laws Criminalizing HIV Transmission

What is notable about Illinois, it represents only the second state to completely repeal its HIV criminalization law, following Texas' repeal back in 1994. “The repeal of the HIV criminal law in Illinois is a tribute to the work of state activists and organizers that made it happen, and a welcome advancement in the broader work to repeal these discriminatory laws across the nation,” said Jada Hicks, The Center for HIV Law & Policy’s Supervising Attorney for Criminal Justice Initiatives.[5]

Photo Source: Fine Art America

The criminal justice system shouldn't be used as a public health tool, because that isn't what it is designed to do. Broadly, some disability advocacy groups seeking to transform the system want to eliminate the criminalization of public health issues. 

In fact, Joshua D. Blecher-Cohen makes the case about disability law and criminalization in The Yale Law Journal, "HIV-specific criminal laws violate the Americans with Disabilities Act’s (ADA) ban on discrimination by public entities." We agree. In fact, there is a strong argument that such criminalization laws not only violate the ADA, but also the Rehabilitation Act of 1973, as amended. 

HIV criminalization laws don't curb the transmission of sexual transmitted infections, but they do promote HIV-related stigma. HIV criminalization laws don't save money, because they actually put taxpayers on the hook for more costs from unnecessary incarceration. HIV criminalization laws don't protect people, yet they do increase the spread of misinformation. People living with HIV/AIDS deserve equal protection under the law! HIV-negative people deserve a more honest approach to public health! And the United States deserves better!

[1] Haseltine, William A (2020, October 21). Underfunding Public Health Harms Americans Beyond Covid-19. Forbes. Retrieved online at https://www.forbes.com/sites/williamhaseltine/2020/10/21/underfunding-public-health-harms-americans-beyond-covid-19/?sh=76b194a9419c#:~:text=Public%20health%20is%20consistently%20underfunded%20and%20often%20viewed,shorter%20lives%2C%20especially%20among%20those%20in%20lower-income%20brackets.

[2] Centers for Disease Control & Prevention (2020, December 21). HIV and STD Criminalization Laws. U.S. Department of Health & Human Services. Retrieved online at https://www.cdc.gov/hiv/policies/law/states/exposure.html.

[3] Prevention Access Campaign (2021, February). Undetectable = Untransmittable. Retrieved online at https://www.preventionaccess.org/undetectable.

[4] Centers for Disease Control & Prevention (2020, December 21). HIV and STD Criminalization Laws. U.S. Department of Health & Human Services. Retrieved online at https://www.cdc.gov/hiv/policies/law/states/exposure.html.

[5] The Center for HIV Law and Policy (2021, July 28). Illinois Becomes Second State to Repeal HIV Criminalization Laws. Retrieved online at https://www.hivlawandpolicy.org/news/illinois-becomes-second-state-repeal-hiv-criminalization-laws. 

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.

#YourVaccineIsWaiting Public Awareness Campaign Targets Marginalized Groups Living with HIV/AIDS

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

The ADAP Advocacy Association recently launched its public awareness campaign - 'Your Vaccine Is Waiting' - targeting marginalized groups living with HIV/AIDS on their need to get vaccinated against Covid-19. Designed to raise awareness, it came in response to learning that numerous segments of the HIV community were among those characterized as vaccine hesitant. The campaign includes four public service announcements, produced by Brandagement, LLC. 

According to the World Health Organization, HIV increases the risk for severe Covid-19 by six percent (6%) and the risk of dying of Covid-19 in the hospital by thirty percent (30%).[1] Yet, vaccine hesitancy among the HIV community remains a very real issue in the United States, as well as abroad in other countries.

#YourVaccineIsWaiting continues our organization's commitment to focusing on the intersection between these two ongoing epidemics. Earlier this year, we blogged about the importance of the immunocompromised getting vaccinated against Covid-19. Fast-forward to now, four amazing advocates living with HIV/AIDS were asked to share their personal perspectives on why getting the jab was important to them, but also for the marginalized groups they represent. 

Tez Anderson, a long-term survivor living with HIV, shares why he decided to get vaccinated against Covid-19. He resides in San Francisco, California. Tez’s message aims to help convince long-term survivors to get vaccinated and further protect themselves.

In urban cities with large LGBTQ communities, HIV and Covid-19 has presented dual challenges for older residents. Listen to his message to the long-term survivor community: https://www.youtube.com/watch?v=s9Z0qiwoe00. 

Jen Laws, a transgender community organizer living with HIV, shares why he decided to get vaccinated against Covid-19. He resides in Slidell, Louisiana. Jen’s message aims to help convince the transgender community to get vaccinated and further protect themselves. 

According to the Williams Institute, among transgender people 25.9% report being in poor health, 32.2% have not seen a medical provider in the last year due to cost, and 34.6% expressed their gender identity could result in denial of quality care. Listen to his message to the transgender community: https://www.youtube.com/watch?v=8W_ZmVDxO74&t=259s.

Michelle Anderson, a community activist and policy associate living with HIV, shares why she decided to get vaccinated against Covid-19. She lives in Waxahachie, Texas. Michelle’s message aims to help convince African Americans to get vaccinated and further protect themselves.

In states with large urban communities, Covid-19 has disproportionately impacted African Americans. Listen to her message to the African American community: https://www.youtube.com/watch?v=7AJ440_kE68&t=213s.

Jonathan J. Pena, MSW, licensed clinical social worker associate living with HIV, shares why he decided to get vaccinated against Covid-19. He lives in Morrisville, North Carolina.

There are over 250,000 Hispanic/Latino Americans living with HIV/AIDS in the United States. One in five new HIV diagnosis in the United States were among Hispanic/Latino men (22%). Listen to his message to the Hispanic/Latino community: https://www.youtube.com/watch?v=mPWXIonBtTI&t=233s.

Why is our ongoing public awareness campaign important? According to research conducted by Johns Hopkins Medicine, Pfizer/BioNTech's vaccine induces a robust immune response in people living with HIV.[2] 

“Previous research has suggested a suboptimal response to COVID-19 vaccines in people living with HIV; however, these studies did not fully characterize and define that response, both for cellular [where the immune system directly attacks infected cells] and humoral [where the immune system circulates virus-fighting antibodies] immunity,” says study senior author Joel Blankson, M.D., Ph.D., professor of medicine at the Johns Hopkins University School of Medicine. “What we found with the widely used Pfizer/BioNTech vaccine was just the opposite, as it induces robust immune responses in people living with HIV comparable to those seen in healthy people.”[3]

The HIV community has waited decades for the development of a vaccine to defend against acquiring the human immunodeficiency virus, and yet we have one available for the other ongoing epidemic. SARS-CoV-2 has already taken 659,813 souls (and counting) from us in the United States, alone. Our community must meet the challenges presented by Covid-19 with the same intensity and rigor that we've done in the fight against HIV/AIDS over the last forty years. That is why, #YourVaccineIsWaiting.

[1] World Health Organization (2021, July 15). WHO warns that HIV infection increases risk of severe and critical COVID-19. Retrieved online at https://www.who.int/news/item/15-07-2021-who-warns-that-hiv-infection-increases-risk-of-severe-and-critical-covid-19.
[2] Johns Hopkines Medicine (2021, August 11). COVID-19 NEWS: Johns Hopkins Medicine Study Shows Vaccine Likely Protects People with HIV. Retrieved online at https://www.hopkinsmedicine.org/news/newsroom/news-releases/covid-19-news-johns-hopkins-medicine-study-shows-vaccine-likely-protects-people-with-hiv.
[3] Johns Hopkines Medicine (2021, August 11). COVID-19 NEWS: Johns Hopkins Medicine Study Shows Vaccine Likely Protects People with HIV. Retrieved online at https://www.hopkinsmedicine.org/news/newsroom/news-releases/covid-19-news-johns-hopkins-medicine-study-shows-vaccine-likely-protects-people-with-hiv.

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.

Deja Vu All Over Again: Counterfeit Biktarvy® & Descovy® Anti-HIV Medicines

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

Baseball Hall-of-Fame legend Yogi Berra coined the infamous phrase, "It's deja vu all over again". For the HIV community, it finds itself once again confronting the sad reality that antiretroviral (ARV) therapy isn't immune from counterfeit and tampered medicines. The latest counterfeit warning - involving products manufactured by Gilead Sciences - represents the second such ARV-related counterfeit scheme in less than one year.

Earlier this year, we raised similar concerns over fake Symtuza® entering the U.S. drug supply chain. It came in response to Janssen Pharmaceutical Companies of Johnson & Johnson issuing a drug warning alert in late 2020 about the counterfeit HIV drug. There were no reported adverse events related to the use of the counterfeit product, but it nonetheless sounded the alarm over fake HIV medications potentially reaching medicine cabinets in American households.

Fast-forward to August 2021, Gilead Sciences alerted the U.S. Food & Drug Administration (FDA) that fake meds for its once-daily single tablet HIV treatment regimen Biktarvy® (bictegravir 50 mg, emtricitabine 200 mg, and tenofovir alafenamide 25 mg tablets) and its HIV treatment and prevention medication Descovy® (emtricitabine 200 mg and tenofovir alafenamide 25 mg tablets) were within U.S. drug distribution networks.[1]

“The safety of individuals taking Gilead medication is always our first priority,” said Merdad Parsey, MD, PhD, Chief Medical Officer, Gilead Sciences. “We are taking aggressive action to ensure that healthcare providers and people who rely on our medicines can confidently distinguish authentic Gilead products from counterfeit drugs.”[2]

Photo Source: Gilead Sciences

According to Gilead Science, "counterfeit and tampered medicines can bring serious and sometimes life-threatening health risks to individuals." It is also important to note that these medicines are: 

• not the same as authentic medicine in terms quality, safety, and/or efficacy;
• not guaranteed to contain the correct drug or active ingredients;
• not likely to meet purity standards; and
• not inspected for unsafe manufacturing conditions or secure supply chains.[3]

Gilead Sciences' full statement is available online here: https://www.gilead.com/news-and-press/company-statements/gilead-warns-of-counterfeit-hiv-medication-being-distributed-in-the-united-states. 

Fortunately, it appears that there have been no reported adverse events related to the use of the counterfeit product. Advocates credit the U.S. drug supply chain's internal safety protocols.

Shabbir J. Safdar, Executive Director of the Partnership for Safe Medicines, summarized, "U.S. licensed pharmacies are the safest in the world. They're so safe we often go years without seeing a fake medication in the legitimate supply chain like this. But the consequences of a fake medication in a licensed pharmacy is serious and life threatening, given the numbers of patients that could be affected. We're grateful to see how fast both Gilead's security team and the FDA have responded."

Any patient who fears they may have received counterfeit Gilead medications should immediately report the medicine to their doctor and pharmacy and Gilead Product Quality Complaints at 1-800-445-3235 or QualityComplaints@gilead.com.

People living with HIV/AIDS, or any chronic condition, need to have confidence that they're getting a safe prescription medicine. The assurance in knowing that the product has been rigorously tested with a safety-seal as appropriate for treatment is vitally important for the patient advocacy community. Forty-years into the epidemic it is clear that drug manufacturers, government agencies, and patients must remain vigilant to combat threats to the nation's drug supply chain.

[1] Gilead Sciences (2021, August 5). Gilead Warns of Counterfeit HIV Medication Being Distributed in the United States. Retrieved online at https://www.gilead.com/news-and-press/company-statements/gilead-warns-of-counterfeit-hiv-medication-being-distributed-in-the-united-states.
[2] Gilead Sciences (2021, August 5). Gilead Warns of Counterfeit HIV Medication Being Distributed in the United States. Retrieved online at https://www.gilead.com/news-and-press/company-statements/gilead-warns-of-counterfeit-hiv-medication-being-distributed-in-the-united-states.
[3] Gilead Sciences (2021, August 5). Gilead Warns of Counterfeit HIV Medication Being Distributed in the United States. Retrieved online at https://www.gilead.com/news-and-press/company-statements/gilead-warns-of-counterfeit-hiv-medication-being-distributed-in-the-united-states.

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.   

Reflections from an HIV Advocate's Journey: Guy Anthony

By: Guy Anthony, Board Member, ADAP Advocacy Association, and President/CEO, Black, Gifted & Whole Foundation

I do not know for sure; but being silent about my HIV diagnosis may have been the easier path to take. But it surely would have been the less rewarding path. 

Shortly after I was diagnosed, I had a mentor tell me, “if we do not tell our own stories, then our stories die along with us, or others are left to determine the story about us.” At that moment, I knew that I had to tell my story. I knew that I could not let it die or let others write it for me. I knew what I was going through would help others, especially other Black gay boys. I had a voice to amplify the message of one of the most marginalized groups in society. I knew I could not be silent about my disease. 

The very moment I was diagnosed, I felt the weight of the stigmas associated with HIV/AIDS creeping upon me. That feeling was crushing yet I felt drawn to help stop the stigma. I have dedicated my adult life to neutralizing local and global stigmas associated with HIV/AIDS. 

Always an ARTivist (artist and activist), I released Pos(+)tively Beautiful: Affirmations, Advocacy & Advice, a collection of narratives, imagery, and affirming anecdotes, on World AIDS Day in 2012. I also began to work with newly diagnosed Black gay men to mentor them through the reality of their diagnosis, their health care options, and assist them with treatment adherence. By working with these men, I helped them achieve viral suppression and helped to reduce the stigma that HIV/AIDS is a death sentence. 

Seeing the tenacity, drive, and strong will of these Black gay men pushed me further and I began to receive recognitions for my work. I served on Washington, DC’s Ryan White Planning Council and helped to oversee the spending of millions of dollars in HIV funding for the city of Washington, DC. I have been invited as a regular contributor for AIDS.gov and POZ.com, where I have gotten to share articles about mental health and HIV, reflections to my younger self, and how art saved my life. 

Photo Source: POZ Magazine

In 2015, Brandon M. Macsata invited me to deliver the opening advocacy keynote at the ADAP Advocacy Association's 7th Annual AIDS Drug Assistance Program Conference in Washington, DC. "Your Seat at the Table" was my message back then to advocates living with HIV, and it remains so today. Only one year later, I was seated on the board of directors for the ADAP Advocacy Association.

I was named one of the top 100 HIV prevention leaders under 30 by POZ Magazine, one of the top 100 Black LGBTQ/SGL Emerging Leaders to Watch by National Black Justice Coalition, one of DBQ Magazine’s LOUD 100, and one of the Top 35 Millennial Influencers by Next Big Thing Inc. 

As a gay, HIV positive, Black man I knew I still had more to offer. I created Black, Gifted, and Whole to celebrate the brilliance and resilience of Black gay men like myself and provide scholarships to Black Queer folx attending college. Black, Gifted, and Whole was recently named one of the six Black Companies You Should Know by Ebony Magazine. I also currently serve as a brand ambassador for Janssen Pharmaceuticals, one of the country’s largest pharmaceutical companies, to help ensure all HIV/AIDS positive gay men are aware of their pharmaceutical options. 

In 2020, I was included on Metrosource Magazine’s list of People We Love. While I am grateful for the love and recognition I have received, I am forever fulfilled and humbled by the opportunity to lift up gay, Black voices and show the world the power of my community.

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.  

Reflections from an HIV Advocate's Journey: Arianna Lint

By: Arianna Lint, President and Founder, Arianna's Center/ Translatina Florida

Today, I am a proud Trans Latina, openly living with HIV, but my journey to get here wasn’t easy. Originally from Peru, I knew that to live life as my authentic self, I would need to leave, and that’s why I came to the United States. My American life began in New York, and as a someone navigating my transition and unable to speak English my options were limited and so like many trans women, I survived as sex worker. For several years I struggled, enduring stigma, discrimination, and violence, while I saved my money as best I could. What kept me focused was that I had a dream.

That dream was I would move to Florida and start a new life. My HIV diagnosis came at a very difficult time as I was finally realizing my move to Florida. It was during the process of attempting to purchase life insurance that I found out that I was HIV-positive. I was devastated, lost, and felt very alone. My saving grace was the love and support of my family. I’ve always been incredibly close to my family, in particular my mother. Their support and acceptance have played a huge role in my life and after my HIV diagnosis I was at a loss for how to disclose my status to them. I experienced feelings of shame and was terrified of disappointing them, and so for almost 4 years I hid my status from them. 

When I found the strength to confide in my mother, she shared with me that she knew I was HIV positive. Apparently, she had found my HIV medications some years beforehand but had never said anything, instead waiting until I was ready to share my status with her. This was heartbreaking, knowing that she had been living with this knowledge for so long and knowing the worry she had been carrying with her. I’m one of the lucky ones though because she is my biggest supporter in everything I do. Not everyone in our community is so fortunate though and much stigma and rejection continue to exist particularly from transgender women of color living with HIV. 

Above all else it was the strength afforded to me by my mother that inspired me to become the unrelenting HIV advocate and transgender leader I am today. Her love and support along with that of my chosen family has helped me realize my dreams. I have a strong support system of traditional family and those friends and allies that have become “family” along the way. From opening my own agency, Arianna’s Center, which has been uplifting the lives of trans women of color for the last six years,  focused on providing services and advocacy from the trans community in Florida and Puerto Rico,  to becoming an international ambassador for the U=U campaign, to speaking and leading sessions at conferences throughout the country and Puerto Rico, and also being a recognized media spokesperson nationwide for trans issues, that love of my family, biological and chosen, has been my fuel for success.

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.