Maryland and North Dakota Take Steps to Kick Their HIV Criminalizations Back to the 1980s

By: Ranier Simons, ADAP Blog Guest Contributor

HIV criminalization laws represent the worst of society’s response to the AIDS epidemic, rooted in fear, homophobia, and hysteria…and a lot of misinformation. The United States was the first nation to enact HIV-specific criminal laws, dating back to 1986-87. HIV criminalization laws still exist, but the wheels of progress are slowly chipping away at them as medical advances have changed HIV/AIDS from a death sentence to a manageable chronic disease. Equally important is the growing acceptance of the science behind “Undetectable Equals Untransmittable” (U=U), which has weakened the argument for these outdated, inhuman laws. Recently, two states, Maryland and North Dakota, passed bills to remove HIV criminalization laws from their statutes.

Photo Source: CHLP | The Marshall Project

Yet, many states still have active HIV criminalization laws in place. From 2008 to 2013, at least 180 people living with HIV/AIDS (PLWHA) were arrested or charged under HIV criminalization laws (Tang, 2024). These HIV statutes have not been updated to reflect evidence-based science and are predatory towards PLWHA. As of February 2025, 32 states have offenses that criminalize exposure to and/or transmission of HIV (CHLP, 2025). In 1994, Texas was the first state to repeal its HIV criminalization law (CHLP, 2020). The reality is that much work remains to kick HIV criminalization laws back to the 1980s, and some states are doing it!

In February of this year, Senate Bill 356 and House Bill 39 passed in both Maryland chambers. Both bills are repeals of a section of the Maryland code that specifically criminalized the intentional transfer of HIV from one person to another. The statute declared the knowing transmission of or attempted transmission of HIV a misdemeanor subject to a fine of up to $2,500 or a jail term with a maximum of three years, or both. Legislators passed the bills with the understanding that the law was not an effective means of protecting public health. Delegate Kris Fair stated (seen below), “The law was, for right or wrong, thought to help curb the transmission of HIV…What public health experts and criminal justice organizations have taught us … is that we’ve actually seen the exact opposite.” (Brown, 2025).

Photo Source: Maryland Matters | Photo by Danielle J. Brown

Also, on February 20, 2025, North Dakota passed House Bill 1217. This repeals a section of the code regarding the willful transfer of bodily fluid containing HIV. ‘Transfer’ here is defined as “engage in sexual activity by genital-genital contact, oral-genital contact, or anal-genital contact, or to permit the reuse of a hypodermic syringe, needle, or similar device without sterilization.” The law being repealed states that a person who knowingly transfers HIV to another person without their knowledge can be charged with a Class A felony with a maximum penalty of 20 years in prison and a maximum fine of $20,000. The bill changes the crime from a felony to a misdemeanor (Gall, 2025). In North Dakota, HIV is the only disease attributed to a felony charge, whereas other STI transmission crimes are misdemeanors. The bill now needs to be considered in the House.

Both states acknowledge that HIV criminalization is discriminatory. Singularly carving out HIV as a disease requiring enhanced criminal penalties increases stigma, is a disincentive for the public to normalize testing, and disproportionately affects specific populations. Fear of potential criminal prosecution means that people will be more hesitant to seek testing and subsequently must disclose their status to their partners (Yang, 2018). Additionally, it can adversely affect the trust within the doctor-patient relationship, resulting in delayed antiretroviral treatment initiation, poorer treatment outcomes, and adversely affecting public health. 

Medical science has made the possibility of HIV transmission effectively non-existent by PLWHA, who are undetectable on treatment. “U=U” is not a catchy slogan – it is an evidence-based scientific reality. Requiring an individual to indisputably prove their disclosure of their status if accused of exposure without consent is virtually impossible (Lazzarini, 2013). When HIV criminalization laws are in place, people can nefariously use them against people, such as a spurned partner retaliating against a former partner when a relationship does not end on good terms. Predatory laws harm PLWHA because being convicted does not even require actual HIV transmission to occur or proof of intent to deliberately pass the virus on to someone. 

Photo Source: Red Bubble

HIV criminalization laws also disproportionately affect marginalized groups, such as communities of color, specifically black men. Racial inequities and social determinants of health have already been shown to increase the likelihood of black male exposure to the criminal legal system (AIDS Vu, 2021). When HIV criminalization laws add enhanced sentencing or create violations that otherwise would not exist, they exacerbate targeted adverse outcomes. In Maryland, for example, Black people are 30% of the population, 71% of those who are PLWHA, and 82% of HIV-related criminal cases. Black men, specifically, are 68% of those accused in HIV-related cases despite comprising only 14% of the state population and 44% of Maryland PLWHA (UCLA, 2024).

Maryland and North Dakota’s recent bills to eliminate HIV criminalization are positive steps, but much more needs to be done. The number of states that currently have laws specifically targeting HIV for violations outside of standard communicable disease statutes or heightened sentencing is unacceptable. The stigma and hindrance to widespread testing of HIV criminalization add to the numerous barriers to ending the HIV epidemic in the United States. It would be easily conquerable if laws would catch up to science.

[1]  AIDSVu. (2021, May 10). HIV Criminalization. Retrieved from https://aidsvu.org/news-updates/hivcriminalization/#:~:text=HIV%20criminalization%20laws%20have%20also,transgender%20women%2C%20and%20sex%20workers.

[2] Brown, J. (2025, February 22). Bills to repeal ‘antiquated’ law criminalizing transfer of HIV sail through House, Senate. Retrieved from https://marylandmatters.org/2025/02/22/bills-to-repeal-antiquated-law-criminalizing-transfer-of-hiv-sail-through-house-senate

[3] The Center for HIV Law and Policy (CHLP). (2020). HIV CRIMINAL LAW REFORM: BEFORE & AFTER: Texas. Retrieved from https://www.hivlawandpolicy.org/sites/default/files/HIV%20Criminal%20Law%20Reform%20Before%20and%20After%20Texas%2C%20CHLP%202020.pdf

[4] The Center for HIV Law and Policy (CHLP). (February, 2025). Mapping HIV Criminalization Laws in the U.S. Retrieved from https://www.hivlawandpolicy.org/sites/default/files/2025-02/Mapping%20HIV%20Criminalization%20Laws%20in%20the%20US%2C%20CHLP%202025.pdf

[5] Gall, P. (2025, February 20). House Bill to reduce HIV transmission penalty advances in North Dakota. Retrieved from https://www.ksjbam.com/2025/02/20/intentional-hiv-transmission-charge-may-be-lowered-from-felony-to-misdemeanor/#:~:text=House%20Bill%201217%20passed%20on,to%20the%20Senate%20for%20consideration.

[6] Lazzarini, Z., Galletly, C. L., Mykhalovskiy, E., Harsono, D., O'Keefe, E., Singer, M., & Levine, R. J. (2013). Criminalization of HIV transmission and exposure: research and policy agenda. American Journal of Public Health, 103(8), 1350–1353. https://doi.org/10.2105/AJPH.2013.301267

[7] UCLA School of Law Williams Institute. (2024, January). Enforcement of HIV Criminalization in Maryland. Retrieved from https://williamsinstitute.law.ucla.edu/wp-content/uploads/HIV-Criminalization-MD-Jan-2024.pdf

[8] Tang, Catherine (2024). Our country's dark history of persecuting people with HIV. HIV Plus Magazine. Retrieved from https://www.hivplusmag.com/stigma/us-history-hiv-criminalization.

[9] Yang, Y. T., & Underhill, K. (2018). Rethinking Criminalization of HIV Exposure — Lessons from California’s New Legislation. New England Journal of Medicine, 378(13), 1174–1175. https://doi.org/10.1056/nejmp1716981

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. 

Stigmas Impact on ART Medication Adherence among Young Transgender Women & HIV-Positive MSM

By: Ranier Simons, ADAP Blog Guest Contributor

One of the most essential tenets of antiretroviral therapy (ART) is adherence. Consistent administration of HIV medication is the route to well-controlled HIV disease and ultimately undetectable status. Lack of adherence prevents viral suppression, resulting in advanced disease states, can result in medication resistance, and contributes to transmission. A myriad of challenges causes key populations of people living with HIV/AIDS (PLWHA) to experience ineffective adherence. A recent report on a study conducted in several countries of Africa reveals a lack of adherence among key populations of young people due to intersectional stigma. 

Photo Source: UNESCO

The Health Economics and AIDS Research Division (HEARD) of the University of KwaZulu, Kamuzu University of Health Sciences in Malawi, the University of Zambia, and the University of Zimbabwe collaborated for a three-year research project to examine how various stigmas influence anti-retroviral therapy (ART) medication adherence in young transgender women and HIV-positive men who sex with men (MSM).[1] The study of 156 participants consisted of interviews and surveys. The purpose is to explore the experiences of intersectional stigma, develop a conceptual change model, design an intervention to improve ART adherence based on the model, and document results to create guidelines for improvement of the status quo in the South African Development Community Region.[1] Overall, fear of the study population’s HIV status being revealed and depression from dealing with the social stigma attached to their sexual and gender minority status results in poor medication adherence. 

Fear of discovery amidst the study population was nuanced. Some participants skipped doses of their medication because their living arrangements did not allow them privacy to take care of their health. They feared their medication being discovered in their belongings or being seen taking medication. Some of the participants lived in communities with social stigma of PLWHA. These young people feared their family or friends discovering their HIV status. Others feared discovery by their relationship partners. They feared their partners would desert them upon discovery of their status. In this case, skipping medication means poor health outcomes for themselves and possible transmission to their partners. Some participants even reported HIV stigma within the LGBTQ community, which they felt would make it harder for them to find partners.[1]

Others dealt with a different fear. Some of the participants lived in communities where there was increasing normalization of more acceptance of PLWHA. However, in these communities, there is still a negative stigma towards homosexuality, and in some cases, it is criminal. For the youth who were already known to be homosexual, they feared discovery of their HIV status because these communities saw it as a punishment for their sexuality. Thus, they skipped medication often or did not seek out regular treatment in medical facilities for fear of being treated poorly for being HIV positive and homosexual. 

For both the transgender women participants and the MSM, social stigma due to their sexual and gender identity caused mental health issues that contributed to a lack of treatment adherence.[1] They reported being looked upon with disdain and sometimes verbal or physical violence; navigating society as proverbial ‘black sheep’ caused depression and even suicidal ideation that made it challenging to be consistent with the self-care of ART adherence.[1,2] This was especially true for those who reported alcohol and substance abuse as a way of coping. It’s a well-documented fact that substance abuse results in poor medication adherence. 

Photo Source: The Lancet

The research project is ongoing and in the stages of synthesizing intervention concepts. The discussion of the data has spawned several priorities. One priority is finding safe avenues of adequate care regarding HIV treatment. There need to be safe spaces to receive care and medication. Additionally, mental health resources for these young people are required. It is imperative to create safe spaces to talk about what is going on in their lives and how to cope. They need mental health professionals as well as safe peer group spaces to interact and support each other. Researchers also emphasized the importance of including the experiences and perceptions of front-line healthcare providers. The study cannot change external factors such as cultural prejudices and unfair criminalization. However, creating safe healthcare pipelines and infrastructure for psycho-social support will hopefully improve ART adherence and quality of life for the young sexual and gender minorities of Zimbabwe, Zambia, and Malawi.

[1] SADC. (2023, April). Regional Symposium Report. Retrieved from https://www.heard.org.za/wp-content/uploads/2023/06/SADC-Symposium-Report_final.pdf

[2] Govender, K., Nyamaruze, P. (2023, September 25). Young people with sexual or gender diversity are at higher risk of stopping their HIV treatment, research finds. Retrieved from https://medicalxpress.com/news/2023-09-young-people-sexual-gender-diversity.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.   

Tell HIV Stigma: Stay in Your Lane

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

****Important Support Resources Included****

Recently, I posted some commentary on my personal Twitter handle (@Purple_Strategy) noting an observed uptick in HIV stigma in the gay dating world. Gay dating apps are notorious for it. Likely, it isn't limited to the dating space, evidenced by a recent report issued by GLAAD, as well as subsequent commentary in private conversations and social shares highlighting examples of HIV stigma. It is very rare for me to interject my personal life's situations into ADAP Advocacy's daily advocacy and public policy activities, but it is vitally important to combat such stigma whenever possible. Frankly, HIV stigma has no place in my life and thus it needs to stay in its lane.

I'm a Taurus; we're pretty confident. I'm Italian; we're tough as nails. You hit me; I hit you ten times harder. But not everyone is like me. These recent dating rejections surrounding my status (undetectable, since 2004) weren't the first experiences with HIV stigma, and I know they won't be the last of them. But I can honestly say that I've taken them with a grain of salt. And now, U=U (undetectable equals untrabnsmittable) and fine work being done by Prevention Access Campaign and U=U plus has changed the national conversation.

BUT! Not everyone is a stubborn bull like me. I've had countless conversations with friends and colleagues, whereby their personal "run-ins" with HIV stigma really hurt them. It hurt their feelings, self-confidence, pride, and dare I even say, their self-worth. It has always bothered me on a very deep level seeing them struggle to cope with the ugliness that is HIV stigma.

Fighting HIV stigma won't come easily. According to GLAAD's 2023 State of HIV Stigma Report, only half of the respondents indicated they're "knowledgable" about HIV. Whereas GenX is considered most "knowledgable" about HIV, still one in four don't fall into that designation. What is most troubling is the trend line is going in the wrong direction on the general publics' comfortability interacting with people living with HIV—especially among certain professionals such as barbers or hair stylists, and teachers. Interacting with co-workers living with HIV is now problematic for 1:3 respondents.

Photo Source: GLAAD, 2023

It is 2023, and we're still dealing with 1993 attitudes (pre-HAART). I truly believe that there is plenty of fight left in all of us. I also believe that we are in this fight together, so I felt compelled to share some helpful resources available to my fellow POZ folks who might be coping with HIV stigma:

• Prevention Access Campaign - U=U Resource Center
• CDC - Facts About HIV Stigma and Discrimination
• CDC - Ways to Stop HIV Stigma and Discrimination
• CDC - Stigma Scenarios: Support in Action
• HIV.gov - Standing Up to Stigma
• GLAAD - 2023 State of HIV Stigma Report
• Healthline - How We Start Erasing the Stigma Around HIV
• Center for HIV Law & Policy - Stigma
• SERO Project - United States Resources and Groups
• Transgender Law Center - Legal Information Helpdesk
• Positively Aware - A Day with HIV
• Greater than HIV - Real People. Real Stories.
• ImstillJosh - Twitter
• MarninaTheQueen - TikTok 
• PozLeigh - YouTube Channel

(email info@adapadvocacy.org if you wish to recommend a resource be added above)

Life is hard enough without having to confront stigma, simply over sero status. HIV stigma says more about the people dishing it out, and less about defining who you are. We have the tools to keep HIV stigma in its lane. There are over a million of us POZ folks in the United States, so remember that you're not alone and there are resources available!

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.

Historic Victory for HIV-Positive Military Service Members

By: Ranier Simons, ADAP Blog Guest Contributor

In the early years of the AIDS epidemic, fear and hysteria were founded on and fueled by paranoia of the unknown. Seroconversion predominately resulted in rapid onset of severe illnesses resulting in premature death. The lack of knowledge concerning modes of transmission, coupled with the stigma of what was then being labeled a predominantly ‘gay disease,’ resulted in multiple lanes of discrimination. Discrimination manifested in many forms of access denial, including housing, employment, and healthcare. In fact, HIV discrimination was specifically ‘codified’  in the military regulations. 

Photo Source: Advocate

The Pentagon began mandatory HIV screening for recruits in 1985.[2] Those with positive test results were turned away. Active-duty members who tested positive were allowed to continue to serve. However, the stigma around the assumption that they would get too sick to function productively meant demotion of duty and ostracism. HIV-positive service members were also prosecuted for sodomy and disobedience, and some were discharged without medical coverage.[2] Anecdotal evidence indicates some were segregated into separate barracks for HIV-positive troops.

Medical advancements in the treatment of HIV have drastically changed the trajectory of the disease since the 1980s. HIV is no longer a death sentence, and life-expectancy is almost on par with non-infected individuals.[2] Moreover, current antiviral medications reduce the viral load to undetectable levels where the possibility of transmission is effectively eliminated even through sexual contact, or has been termed 'undetectable equals untransmissible’ (U=U).[3]

Despite the current state of medical and scientific understanding of HIV, the military has yet to change its outdated policies. Employers are legally prohibited from discrimination against HIV-positive individuals on a federal level by the Americans with Disabilities Act of 1990.[4] There are other protections afforded under the Rehabilitation Act of 1973, as amended. Regardless, the military still maintains HIV discriminatory practices.

The Pentagon presently bans HIV-positive people from enlisting in armed services and prohibits HIV-positive people from being commissioned out of military academies. Additionally, the Pentagon had a policy of banning HIV-positive service members from deployment even with undetectable viral loads on active antiretroviral therapy. 

The wheels of justice, however, seem poised to pump the brakes on the military's discriminatory policies. A federal district judge recently struck down part of the Defense Department’s current policy.

On April 6, 2022, in response to two different lawsuits, U.S. District Judge Leonie Brinkema ruled that U.S. service members can no longer be discharged or barred from becoming officers solely based on their positive HIV status.[4] Ra v. Austin and Roe & Woe v. Austin are two separate cases that were tried together. [4] In Harrison v. Austin, Sergeant Nick Harrison, who joined the military in 2000, sued the Army and the U.S. Department of Defense for denying his application to become a military lawyer with the JAG Corps due to his HIV status. He tested positive in 2012 after a tour of duty in Kuwait.[4]

Sergeant Nick Harrison; Photo Source: Metro Weekly

In Roe & Voe v. Austin, the U.S Air Force attempted to discharge two active-duty airmen based on their HIV status. The discharge decision was based on a Trump-era policy of discharging service members who are undeployable for a period of 12 months. Since HIV-positive status barred the plaintiffs from deployment, they were subsequently undeployable for 12 months.[1]

Judge Brinkema’s ruling is a victory for the roughly two-thousand HIV-positive service members currently serving. This ruling also opens the door to future legal challenges involving the current policy preventing HIV-positive people from joining the military. Current military policy is not in line with current medical science and treatment innovation. Legal remedies to the detrimental results of outdated policy are sure to continue.

[1] Padgett, D. (2022, April 7). Landmark court victory: Military can’t boot people with HIV. Retrieved from https://www.hivplusmag.com/stigma/2022/4/07/landmark-court-victory-military-cant-boot-people-hiv
[2] Lalwani, N. (2021, July 22). The military's HIV policies are discriminatory and decades behind the times. Retrieved from https://www.washingtonpost.com/outlook/the-militarys-hiv-policies-are-discriminatory--and-decades-behind-the-times/2021/07/22/616fa480-e8c0-11eb-8950-d73b3e93ff7f_story.html
[3] RW Eisinger, CW Dieffenbach, AS Fauci. HIV viral load and transmissibility of HIV infection: undetectable equals untransmittable. Journal of the American Medical Association DOI: 10.1001/jama.2018.21167 (2019)
[4] Ryan, B. (2022, April 7). Judge strikes down military's limits on service members with HIV. Retrieved from https://www.nbcnews.com/nbc-out/out-news/judge-strikes-militarys-limits-service-members-hiv-rcna23513

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. 

Gareth Thomas: Fighting HIV Stigma with Empowerment

By: Sarah Hooper, intern, ADAP Advocacy Association, and senior at East Carolina University

The decision to disclose an HIV status has become more common over the last decade, but challenges remain. Namely, HIV-related stigma. Dating back to 1991 with the disclosure by Earvin "Magic" Johnson Jr., celebrities sharing their HIV status has helped to change societal attitudes. In late 2019, Welsh rugby player Gareth Thomas announced he was HIV positive, with the end goal to make sure that people understood HIV did not weaken him as a person. (The Guardian).

The stigma surrounding HIV has often created the false narrative of ‘this is the end’ - which is anything but true! Thomas used his massive media celebrity platform to speak, not only for himself, but others with living with HIV. Thomas wants to educate the world using hope and resiliency to end the negative stigma associated with HIV. 

Thomas is a big name within sports in the United Kingdom, and the announcement of his HIV status came just prior to the news about his marriage to Stephen Williams-Thomas. Revealing his sexuality in the world of rugby back in the early 2000s made headlines but coming out with HIV in 2019 felt just as big, according to Thomas. 

Photo Source: Huffington Post UK

“It felt much more shameful,” Thomas said. “This was something that I felt people wouldn’t understand.”

Prior to announcing his HIV diagnosis in 2019, Thomas said he ran into issues with the press wanting to reveal his diagnosis before he could tell his parents. The Sun ran a story about an ‘unnamed sports player’ who would reveal he had HIV, which upset Thomas greatly.

Thomas was disappointed in the media’s response to his HIV diagnosis, and said the media still has an appetite to expose people as HIV positive. One example of this was the negative reaction to Magic Johnson’s announcement of his HIV positive diagnosis in the 1990s, when HIV was still unfamiliar to many. Even with proper treatment and prevention, HIV still carries a stigma for many people, which Thomas felt. 

“I actually feel kind of empowered and feel like I live a freer, happier life when I don’t have secrets. I’m quite happy to shine a light on the negative moments in my life,” Thomas said. 

Photo Source: On Top Magazine

Thomas was recently tapped by ViiV Healthcare and the Terrence Higgins Trust to serve as the spokesman for Tackle HIV, which is a new public awareness and education initiative. 

Said Thomas about the Tackle HIV campaign, "Since finding out I have HIV I have learnt so much about the virus and about how it affects people living with it. HIV is still misunderstood and because of that stigma still exists. I have heard first hand stories of how deeply this stigma and self-stigma affects people living with HIV and I am determined to change this. That’s why I have started the Tackle HIV campaign."

Learn more at https://tacklehiv.org.

Celebrity transparency about HIV status has increased in the past three decades, which mirrors the general public. The announcements by celebrities, like Thomas, demonstrates that more needs to be done to combat HIV-related stigma. But every positive message (no pun intended) chips away at the negative attitudes still persisting today among some people. Thomas sharing his HIV journey, like the stories shared by many of our family, friends, and neighbors, serve as a reminder that an HIV-positive diagnosis and living a full, healthy and successful life don't have to be mutually exclusive. 

References:

• Godfrey, C. (2020, June 08). Gareth Thomas on coming out as HIV positive: 'It was my right to tell my family – not somebody else's'. Retrieved from https://www.theguardian.com/sport/2020/jun/08/gareth-thomas-on-coming-out-as-hiv-positive-it-was-my-right-to-tell-my-family-not-somebody-elses

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. 

U.S. Court of Appeals Strikes Down Trump Administration's Discriminatory 'Deploy or Get Out' Policy

By: Sarah Hooper,  intern, ADAP Advocacy Association, and rising senior at East Carolina University

In January 2020, the U.S. Court of Appeals for the fourth circuit upheld a lower court ruling in Roe and Voe v. Esper, which allows the two HIV positive members of the air force to continue their service. This ruling also will prevent the discharge of any other airmen based on HIV status alone (Buhl, 2020).

Previously, the U.S. Air Force has justified the discharge of military service members living with HIV under the ‘Deploy or Get Out’ policy, which was first introduced in February of 2018. This policy stated that any service member who is deemed non-deployable for over a year would be subsequently discharged. This policy unfairly affected service members living with HIV, as the long-standing HIV policies within the Air Force and United States military consider HIV positive members non-deployable (Allen, 2018).

The plaintiffs in the Roe and Voe v. Esper case first requested a preliminary injunction in February 2018 in the district court for eastern Virginia.

The most recent case of Roe and Voe v. Esper was filed in December 2018 by Lambda Legal and the Modern Military Association of America, with pro bono co-counselors Winston and Strawn. After filing in December, the appeals court opinion concluded that since the government didn’t consider the low possibility of transmission of HIV, the Air Force denied the service members of their right as employees able to serve.

“These servicemembers, like other HIV-positive individuals with undetectable viral loads, have no symptoms of HIV. They take daily medication—usually one pill, for some people two—and need a regular, but routine blood test. They cannot transmit the virus through normal daily activities, and their risk of transmitting the virus through battlefield exposure, if the virus can be transmitted at all, is extremely low. Although transmission through blood transfusion is possible, these servicemembers have been ordered not to donate blood,” said the opinion (Lambda Legal).

According to the Center for HIV Law and Policy:

“Military policies and regulations – most of them codified in the Uniform Code of Military Justice – set forth consequences for conduct by service members living with or at risk of HIV,” (HIV Law and Policy).

According to The Body, Roe and Voe v. Esper case is one of three cases challenging military policies against service members living with HIV. Two others are currently being reviewed.

“Even though my commanding officer and doctors wanted me to stay in, the informal board recommended discharge, then a formal board of three members recommended discharge,” Roe said in reference to his experience with the Air Force.

Scott A. Schoettes is the HIV project director at the advocacy group Lambda Legal, who helped represent Roe and Voe in their plea at the court of appeals.

“The military is really the only employer in the United States that’s still allowed to do this. Everybody else you can hold accountable. You can sue under statutory protections for people living with HIV,” said Schoettes.

Roe and Voe will be able to continue serving in the Air Force under the recent court of appeals ruling.

References:

• Buhl, L. (2020, January 16). Federal Court Upholds Injunction Preventing Discharge of HIV-Positive Airmen. The Body dot com. Retrieved from https://www.thebody.com/article/appeals-court-injunction-discharge-hiv-military?ap=2008
• HIV Law and Policy Military. (n.d.). Retrieved from https://www.hivlawandpolicy.org/issues/military
• Allen, S. (2018, September 19). The Danger of 'Deploy or Get Out' Facing HIV-Positive Troops. The Daily Beast. Retrieved from https://www.thedailybeast.com/the-danger-of-deploy-or-get-out-facing-hiv-positive-troops
• Opinion: Roe and Voe v. Esper. (2020, January 10). Retrieved from https://www.lambdalegal.org/in-court/legal-docs/roe_va_20200110_opinion

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.

HIV/AIDS Fireside Chat Retreat in New Jersey / New York Tackles Pressing Issues

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

The ADAP Advocacy Association hosted an HIV/AIDS "Fireside Chat" retreat in Weehawken, New Jersey among key stakeholder groups to discuss pertinent issues facing people living with HIV/AIDS. The Fireside Chat took place on Thursday, December 5th, and Friday, December 6th. U = U, Molecular HIV Surveillance, and Mental Health were evaluated by 20 diverse leaders in the fight against the HIV/AIDS epidemic.

Photo Source: Getty Images

The Fireside Chat included moderated white-board style discussion sessions on the following issues:

• U = U: A Foundation for Ending the HIV Epidemic — moderated by Murray Penner, Executive Director, North America, Prevention Access Campaign
• Ryan White Program: Is Molecular HIV Surveillance a Public Health Tool or Weapon to Fuel Stigma  — moderated by Brandon M. Macsata, CEO, ADAP Advocacy Association (planned facilitator was sick)
• Mental Health: Implications of Co-Occurring Diagnosis of a Mental Condition and HIV/AIDS  — moderated by Brandon M. Macsata, CEO, ADAP Advocacy Association (planned facilitator was sick)

The discussion sessions were designed to capture key observations, suggestions, and thoughts about how best to address the challenges being discussed at the Fireside Chat. The following represents the attendees:

• Tez Anderson, Founder, Let's Kick ASS (AIDS Survivor Syndrome)
• Guy Anthony, Founder, Black, Gifted & Whole
• William E. Arnold, President & CEO, Community Access National Network (CANN)
• Robert Breining, spokesperson, Positively Fearless
• Patricia Charleston, Program Supervisor, Gaudenzia, Inc.
• Jeffrey S. Crowley, Distinguished Scholar & Program Director at the Infectious Disease Initiatives, O'Neill Institute for National and Global Health Law, Georgetown Law
• Hilary Hansen, Executive Director, US Patient Advocacy & Strategic Alliances, Merck
• Catherine Hanssens, Founding Executive Director, The Center for HIV Law and Policy
• Ben Kelly, VP Operations, Maxor National Pharmacy Services
• Scott Kramer, President & Psychotherapist, Affirming Psychotherapy LCSW PC
• Jen Laws, policy consultant
• Vickie Lynn, Visiting Instructor, USF
• Brandon M. Macsata, CEO, ADAP Advocacy Association
• Julie Marston, Executive Director, Community Research Initiative of New England, Inc.
• Ann-Margaret Navarra, Faculty - Assistant Professor, NYU Rory Meyers College of Nursing
• Stephen Novis, Director, Government Relations, ViiV Healthcare
• Murray Penner, Executive Director, North America, Prevention Access Campaign
• Alan Richardson, Executive Vice President of Strategic Patient Solutions, Patient Advocate Foundation
• Lee Storrow, Executive Director, North Carolina AIDS Action Network (NCAAN)
• Marcus Wilson, National Policy & Advocacy Director, Johnson & Johnson

The ADAP Advocacy Association is pleased to share the following brief recap of the Fireside Chat.

Undetectable = Untransmittable:

Murray Penner provided a basic overview on the science behind "undetectable equals untransmittable" ("U=U"), which is clear and indisputable. Treatment as prevention dates back to the 1990s, including preventing mother-to-child transmission. According to Penner, there have been four large international studies that have demonstrated U=U is sound public health policy.

According to Penner: "Four major scientific studies have proven that HIV-positive individuals who have an undetectable viral load and stay on their medications do not transmit the virus to sexual partners. The findings were initially announced in 2008 with the Swiss Statement, and they were confirmed again in 2016. For many people diagnosed with the virus, the news is nothing short of life-changing. Diagnosis doesn’t mean no more satisfying relationships. And that lifts people out of depression. They feel like they can be intimate and free in their sexual relations, and that’s at the heart of it.”

It was noted that U=U has been endorsed by the World Health Organization ("WHO"), as well as the U.S. Centers for Disease Control & Prevention ("CDC"). The foundation of U=U includes treatment, labs, and connection to care (or "TLC"), and it provides the public health argument for the U=U campaign.

The discussion also focused on the role of providers in educating patients and the general community, as well as how best to communicate the U=U message. There was also some conversation about how the messaging needs to adapt to address diverse communities. The group agreed more needed to be done to use U=U to change the outdated HIV Criminalization laws.

The following materials were shared with retreat attendees:

• Providers Should Discuss U=U with all Patients Living with HIV
• HIVMA Pocket Guide for Providers 
• CDC Letter Approving U=U 
• U=U Basic Fact Sheet – October 2019
• Basic Fact sheet from FHI 360 
• Video: Chloe Orkin is past-chair of the British HIV Association and Gareth Thomas is a rugby player in the U.K. (from Wales) 
• Resources from Prevention Access Campaign (U=U)

The ADAP Advocacy Association would like to publicly acknowledge and thank Murray for facilitating this important discussion.

Molecular HIV Surveillance:

Molecular HIV surveillance involves data collection and sharing between healthcare practitioners and public health departments to track individual treatment resistance, as well as trends in HIV infections. It also leverages cluster detection to identify new infections.

The discussion included an overview on healthcare & privacy rights, which fuel many of the concerns expressed by patients, advocacy groups, and some leading civil rights organizations. Background context included HIV-related stigma, dating back to early 1980s to current times; it also touched on HIV-related criminalization.

Weighing the pros and cons of this took was at the center of the debate on the issue. Whereas it is favored by Health Departments and some public health advocates, there remains considerable push-back from the community. There is no informed consent by patients for data collected using individuals’ blood samples. State and local health departments report de-identified data to the CDC, but there are obvious patient privacy concerns.

HIV Criminalization occupied a lot of the group's time during the discussion. Draconian HIV-specific criminalization laws still exist in 34 states; another 24 states have used general criminal statutes against people living with HIV for “HIV exposure” or non-disclosure of HIV status (CHLP, 2019). These laws relegate people living with HIV to second-class citizenship for numerous reasons. According to the Center for HIV Law and Policy, state HIV criminalization laws “criminalize non-disclosure of HIV status or exposure of a third party to HIV; make exceptions to confidentiality and privacy rights of people living with HIV; provide for sentence enhancements for people living with HIV convicted of underlying crimes such as prostitution and solicitation; and require sex offender registration for people living with HIV” (CHLP, 2019).

The following materials were shared with retreat attendees:

• Molecular HIV surveillance: public health tool or weapon?

Jeffrey R. Lewis, President & CEO of the Legacy Health Endowment, was suppose to facilitate this discussion on Molecular HIV Surveillance but he was unable to attend due to illness. The ADAP Advocacy Association thanks him, nonetheless.

Mental Health:

Mental health and its intersection with HIV/AIDS included important statistics about both health issues in the United States. Research has found considerable overlap between many mental health disorders and HIV infection. Individuals who are receiving care for a mental health condition are four times as likely to be living with HIV compared to the general population, according to a multisite study of the prevalence of HIV with rapid testing in mental health settings.

Increasingly, it is an emerging issue among an aging population living with HIV/AIDS as it has become a chronic disease. As of 2015, over half of the 1.6 million individuals with HIV/AIDS are  50 years, or older. The discussion presented an excellent opportunity to discuss AIDS Survivor Syndrome, which is the term coined by Tea Anderson to describe the “spectrum of sustained trauma survivorship resulting from living through the AIDS pandemic.”

An important tool to address the unmet needs is targeted case management under Medicaid, although not widely utilized for individuals living with HIV/AIDS. Assertive community treatment is an intensive and highly integrated approach for community mental health service delivery. Four states have taken this approach to address the needs of the HIV community.

Once again, HIV Criminalization was discussed because it is linked to numerous mental health conditions among individuals living with HIV/AIDS. According to the CDC's Medical Monitoring Project, four in five HIV-positive patients report feeling internalized HIV-related stigma; two in three say that it is difficult to tell others about their HIV infection; one in three report feeling guilty or ashamed of their HIV status; and one in four say that being HIV-positive makes them feel dirty or worthless (CDC, 2018).

The following materials were shared with retreat attendees:

• Implications of Co-Occurring Diagnosis of a Mental Condition and HIV/AIDS
• MENTAL HEALTH INFOGRAPHIC #1: Implications of Co-Occurring Diagnosis of a Mental Condition and HIV/AIDS (August 2019)
• AIDS Survivor Syndrome & Understanding the Linkages between Mental Health and HIV/AIDS
• MENTAL HEALTH INFOGRAPHIC #2: Implications of Co-Occurring Diagnosis of Depression and HIV/AIDS
• Implications of Health Stigma, Mental Health and HIV/AIDS
• MENTAL HEALTH INFOGRAPHIC #3: Implications of Health Stigma, Mental Health & HIV/AIDS

John Williamson, candidate for Masters in Social Work at Fordham University, was suppose to facilitate this discussion on Mental Health but he was unable to attend due to illness. The ADAP Advocacy Association thanks him, nonetheless.

Additional Fireside Chats are planned in 2020.

References:

• Centers for Disease Control and Prevention. (2018). Medical Monitoring Project. Retrieved from: https://www.cdc.gov/hiv/statistics/systems/mmp/resources.html#Fact%20Sheets,%20
• Center for HIV Law and Policy (March 2019). HIV Criminalization in the United States: A Sourcebook on State and Federal HIV Criminal Law and Practice (Third Edition). Retrieved online at http://www.hivlawandpolicy.org/sourcebook. 

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.

Molecular HIV surveillance: public health tool or weapon?

By: Jeffrey R. Lewis

There is a longstanding, inherent value in the assurance of privacy in our healthcare system. Among other things, it is the keystone of the physician-patient relationship (Holman, 2017); it improves treatment adherence (Heath, 2017); and it has been proven to promote better health outcomes (2013). An ambitious new initiative to combat HIV/AIDS in the United States, however, employs technology that places patients’ privacy protections at risk.

President Trump’s “End the Epidemic by 2030” (EtE) initiative focuses on the 46 (out of 3,000) counties in the United States that account for more than half of new HIV infections. The Administration's plan also provides the opportunity to evaluate the ongoing rise in sexually transmitted diseases, which include worrying trends reported by the U.S. Centers for Disease Control and Prevention (CDC). Examples of the rise of STDs include  a 19% increase in Chlamydia, 63% increase in Gonorrhea, and 71% increase in Syphilis (CDC, 2019).

It is through this initiative that HIV stakeholders are getting an important glimpse into a potentially useful, but troubling, new tool being used by our public health infrastructure – namely, molecular HIV surveillance.

Photo Source: CDC

Molecular HIV surveillance involves data collection and sharing between healthcare practitioners and public health departments to track individual treatment resistance, as well as trends in HIV infections. It also leverages cluster detection to identify new infections of “people normally out of reach to public health” (McClelland, 2019). This information is shared with the CDC, which in turn uses the data to determine funding allocations for state and local health departments combating HIV (CDC, 2017). But at what cost to patients already living with HIV?

What’s troubling is that there is no informed consent by patients for data collected using individuals’ blood samples. State and local health departments report de-identified data to the CDC, but there are obvious patient privacy concerns.

Major health data breaches have become a problem in recent years. In 2016, patients enrolled in California’s AIDS Drug Assistance Program (“ADAP”) (Gorman, 2018); in 2017, patients served by CVS Pharmacy under Ohio’s ADAP  (Hassan, 2018), and Aetna patients in Pennsylvania  (Gordan, 2018), all had their privacy violated. It is not outside the realm of possibility that a data breach could also happen on a larger scale, exposing people living with HIV to further stigma.

Photo Source: Insurance Journal

Although the CDC’s data collection is governed by federal guidelines which intend to protect the privacy of individuals, for those living in the shadows of the nation’s long, dark history of HIV-related stigma, these provide little comfort. The fact remains that negative attitudes toward HIV/AIDS persist.

According to the Kaiser Family Foundation, nearly one in five Americans are somewhat or very uncomfortable working with someone who is living with HIV. One in five Americans is also somewhat or very uncomfortable having a close friendship with someone who is living with HIV. And a staggering two out of five Americans report being somewhat or very uncomfortable sharing a living space with someone who is living with HIV (Kirzinger, 2019). These attitudes are from current data -  not from the early 1980s!

Because molecular HIV surveillance identifies where clusters of people living with HIV reside, there are concerns that it will further fuel HIV-related stigma, which is already high and continues to grow. Worse, patient advocacy groups and legal scholars fear the potential exists for more unfair criminal prosecutions under outdated state HIV criminalization laws that allow prosecution of those who fail to disclose their HIV status.

The CDC has defended the use of this strategy, claiming it is “important to identify growing clusters of recent and rapid transmission to intervene to interrupt transmission” (Oster, 2017). According to their data through December 2015, such clusters have surfaced in each region of the United States, with 1,923 clusters identified, ranging in size from 2-22 cases (Oster, 2017).

Some of these clusters have gained national attention, namely ones in Scott County, Indiana, and San Antonio, Texas. The former resulted in more than 200 diagnoses of new HIV infections, whereas the latter helped to identify a cluster of 24 Latino gay and bisexual men (O’Neill Institute, 2019). What is often overlooked in the discussion over both of these clusters is whether and how syringe exchange programs could have effectively prevented many new infections.

To fully understand why public identification of these clusters is problematic, one must view the current situation in the context of its potential legal implications. Draconian HIV-specific criminalization laws still exist in 34 states; another 24 states have used general criminal statutes against people living with HIV for “HIV exposure” or non-disclosure of HIV status (CHLP, 2019). These laws relegate people living with HIV to second-class citizenship for numerous reasons. According to the Center for HIV Law and Policy, state HIV criminalization laws “criminalize non-disclosure of HIV status or exposure of a third party to HIV; make exceptions to confidentiality and privacy rights of people living with HIV; provide for sentence enhancements for people living with HIV convicted of underlying crimes such as prostitution and solicitation; and require sex offender registration for people living with HIV” (CHLP, 2019).

Lambda Legal,  considered the leading advocacy organization for the LGBTQ community, takes it a step further in characterizing the harm done by state HIV criminalization laws, speculating that these laws harm public health by creating disincentives for people to get tested for HIV and  prevent others who are HIV-positive from seeking care and treatment. Lambda argues that “information from healthcare providers is often used to prosecute,” which undermines the keystone of the physician-patient relationship (Lambda Legal, 2013).

Photo Source: SERO

It isn’t hard to imagine a worst-case scenario in which molecular HIV surveillance data makes its way into a courtroom and contributes to the “unjust prosecutions” (Lambda Legal, 2013), or into the court of public opinion to “stigmatize and oppress” people living with HIV (Lambda Legal, 2013). While molecular HIV surveillance alone cannot be used in court to establish HIV transmission (Schneider, 2019), it can be used as evidence, and that alone should cause considerable concern.

People living with HIV see very little difference between molecular HIV surveillance as an effective “tool” fighting the epidemic and HIV criminalization. They see it more as  a weapon aimed at further isolating, stigmatizing, and punishing people living with HIV. We should be listening to them rather than trying to reassure them.

In our quest to eradicate HIV/AIDS in the United States (and across the globe), it is important to keep the ongoing struggle in perspective. As we pursue new approaches toward ending the epidemic – including leveraging new technologies that can pinpoint HIV clusters and link more people to care – we must not become over-zealous and ignore the very real concerns expressed over molecular HIV surveillance by our family, friends, colleagues, neighbors, and even strangers living with HIV.

HIV-positive people should be afforded the very same privacy protections as their HIV-negative counterparts. That is what this community expect, deserves, and should be guaranteed.

Editor's Note: Mr. Lewis has worked on issues impacting the HIV/AIDS community for many years. The views expressed our his own. He can be reached at jeffreyrobertlewis@gmail.com.

References:

• Centers for Disease Control & Prevention (2017). Surveillance Overview. U.S. Department of Health & Human Services. Retrieved online at https://www.cdc.gov/hiv/statistics/surveillance/index.html. 
• Centers for Disease Control & Prevention (2019). Sexually Transmitted Disease Surveillance 2018. U.S. Department of Health & Human Services. Retrieved online at https://www.cdc.gov/std/stats18/default.htm. 
• Center for HIV Law and Policy (March 2019). HIV Criminalization in the United States: A Sourcebook on State and Federal HIV Criminal Law and Practice (Third Edition). Retrieved online at http://www.hivlawandpolicy.org/sourcebook. 
• Eustace-McMillan, Loni (1999, December 17). Protecting Private Medical Information: Liability for Unauthorized Disclosure. University of Houston Law Center. Retrieved online at https://www.law.uh.edu/healthlaw/perspectives/Privacy/991217Protecting.html. 
• Gorman, Anna (2018, April 6). Former California State Contractor Sued Over Breach Of HIV Patient Privacy. California Healthline. Retrieved online at https://californiahealthline.org/news/former-california-state-contractor-sued-over-breach-of-hiv-patient-privacy/. 
• Gordon, Elena (2018, January 17). Aetna Agrees To Pay $17 Million In HIV Privacy Breach. NPR. Retrieved online at https://www.npr.org/sections/health-shots/2018/01/17/572312972/aetna-agrees-to-pay-17-million-in-hiv-privacy-breach. 
• Hassan, Carma (2018, April 1). Lawsuit claims CVS unintentionally revealed HIV status of 6,000 customers. CNN. Retrieved online at https://www.cnn.com/2018/04/01/health/cvs-lawsuit-hiv-status-customers/index.html. 
• Heath, Sara (2017, August 22). 5 Ways to Improve Medication Adherence in Chronic Care Patients; Providers need to uncover the patient barriers to help improve medication adherence in chronically sick patients. Patient Engagement Hit. Retrieved online at https://patientengagementhit.com/news/5-ways-to-improve-medication-adherence-in-chronic-care-patients. 
• Holman, Tayla (2017, June 27). How to Build Patient Trust to Improve the Doctor-Patient Relationship. Dignity Health. Retrieved online at https://www.dignityhealth.org/articles/how-to-build-patient-trust-to-improve-the-doctor-patient-relationship. 
• Kempner, Martha (2019, March 4). New Study Triggers Concerns Over Use of Molecular HIV Surveillance. TheBodyPro. Retrieved online at https://www.thebodypro.com/article/concerns-over-use-of-molecular-hiv-surveillance. 
• Kirzinger, Ashley, Lunna Lopes, Bryan Wu, and Mollyann Brodie (2019, March 26). KFF Health Tracking Poll – March 2019: Public Opinion on the Domestic HIV Epidemic, Affordable Care Act, and Medicare-for-all. Kaiser Family Foundation. Retrieved online at https://www.kff.org/health-reform/poll-finding/kff-health-tracking-poll-march-2019/. 
• Lambda Legal (2013, December 13). 15 Ways HIV Criminalization Laws Harm Us All. Retrieved online at https://www.lambdalegal.org/publications/15-ways-hiv-criminalization-laws-harm-us-all. 
• Macsata, Brandon M. (2019, May 2) The ADAP Blog. When State & Local Public Health "Policies" Fuel HIV Stigma. ADAP Advocacy Association. Retrieved online at https://adapadvocacyassociation.blogspot.com/2019/05/when-state-local-public-health-policies.html. 
• McClelland, Alexander, Adrian Gula, and Marilou Gagnon (2019, February 10). The rise of molecular HIV surveillance: implications on consent and criminalization. Critical Public Health. Retrieved online at https://www.tandfonline.com/doi/citedby/10.1080/09581596.2019.1582755?scroll=top&needAccess=true. 
• Mesika, Robert (2012, July). The Ethics of HIV Criminalization. ETHICAL INQUIRY: JULY 2012. International Center for Ethics, Justice and Public Life. Retrieved online at https://www.brandeis.edu/ethics/ethicalinquiry/2012/July.html. 
• O’Neill Institute for National & Global Health Law (2019, Augsut). Quick Take: Using Cluster Detection to End the HIV Epidemic. Georgetown Law. Retrieved online at https://oneill.law.georgetown.edu/wp-content/uploads/Quick-Take_HIV-Cluster-Detection_August-2019.pdf. 
• Oster, M.D., Alexa, et. al. (2017, March 24). National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention. Use of molecular surveillance data to identify clusters of recent and rapid HIV transmission. U.S. Centers for Disease Control & Prevention. Retrieved online at https://www.seaetc.com/wp-content/uploads/2017/01/Use-of-Molecular-Surveillance-Data-to-Identify-Alexandra-Oster.pdf. 
• Schneider, Jacon (2019, September 12). Is HIV Molecular Surveillance Worth The Risk? The Center for HIV Law & Policy. Retrieved online at http://www.hivlawandpolicy.org/fine-print-blog/hiv-molecular-surveillance-worth-risk. 
• Serenko*, Natalia, and Lida Fan (2013). Patients’ perceptions of privacy and their outcomes in healthcare. Int. J. Behavioural and Healthcare Research, Vol. 4, No. 2. Retrieved online at http://aserenko.com/IJBHR_Serenko_Fan.pdf. 

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.

HIV/AIDS Fireside Chat Retreat in Virginia Tackles Pressing Issues

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

The ADAP Advocacy Association hosted an HIV/AIDS "Fireside Chat" retreat in Richmond, Virginia among key stakeholder groups to discuss pertinent issues facing people living with HIV/AIDS. The Fireside Chat took place on Thursday, September 12th, and Friday, September 13th. Medicaid Expansion, Ryan White HIV/AIDS Program ("RWHAP"), and Patient Assistance Programs (PAPs) were dissected by 23 diverse leaders in the fight against the HIV/AIDS epidemic.

Photo Source: Getty Images

The Fireside Chat included moderated white-board style discussion sessions on the following issues:

• Medicaid Expansion: Implications for Access to Care & Service Delivery for PLWHA in Virginia — moderated by Dr. Kathleen A. McManus, Department of Medicine,University of Virginia
• Ryan White Program: Impact to Service Delivery under Trump's Plan to Eliminate AIDS by 2030 — moderated by Jeffrey S. Crowley, O'Neill Institute for National and Global Health Law, Georgetown Law
• Access to Care: How Patient Advocacy Groups & Patient Assistance Programs Fill Treatment Gaps for PLWHA — moderated by Alan Richardson, Patient Advocate Foundation

The discussion sessions were designed to capture key observations, suggestions, and thoughts about how best to address the challenges being discussed at the Fireside Chat. The following represents the attendees:

• Carnelle Adkins, Lead Case Manager, Capital Area Health Network
• William E. Arnold, President & CEO, Community Access National Network (CANN)
• Jeffrey S. Crowley, Distinguished Scholar & Program Director at the Infectious Disease Initiatives, O'Neill Institute for National and Global Health Law, Georgetown Law
• Dawn Patillo Exum, Director, Public Policy, MERCK
• Kathie Hiers, President & CEO, AIDS Alabama
• Lynea Hogan, Virginia Consumer Advocate
• Lisa Johnson-Lett, Treatment Adherence Specialist /Peer Educator, AIDS Alabama
• Diana Jordan, Director of Disease Prevention, Virginia Department of Health
• Darnell Lewis, Local Coordinator ACCELERATE, TCC Group
• Brandon M. Macsata, CEO, ADAP Advocacy Association
• Kathleen McManus, Physician, University of Virginia
• John Minneci, Regional Account Executive, ViiV HealthCare
• Herminia Nieves, Assistant Director of Medication Access, Virginia Department of Health
• Theresa Nowlin, Massachusetts Consumer Advocate
• Juan Pierce, Virginia Consumer Advocate
• Alan Richardson, Executive Vice President of Strategic Patient Solutions, Patient Advocate Foundation
• Josh Robbins, Owner, BNA Talent Group & The BRANDagement
• Kimberly Scott, Director of HIV Care Services, Virginia Department of Health
• Matt Sheffield, Director, Government Affairs, Thera Technologies
• Robert Skinner, President & CEO, Valley AIDS Information Network
• LaWanda Wilkerson, North Carolina Consumer Advocate
• Marcus Wilson, National Policy & Advocacy Director, Johnson & Johnson
• Jennifer Zoerkler, Executive Director, VHO

The ADAP Advocacy Association is pleased to share the following brief recap of the Fireside Chat.

Medicaid Expansion:

Dr, Kathleen McManus summarized how Medicaid expansion under the Affordable Care Act has played a major role in the uninsured rate declining from 18% to 14% among people living with HIV/AIDS. In Medicaid expansion states the decline was event more visible, down from 14% to only 7% (with Ryan White clients classified as uninsured clients). In Virginia, for example, Medicaid eligibility was one of the most restrictive programs in the nation.

That said, barriers remain under Medicaid expansion. Sometimes more restrictions exist under Medicaid, such as closed drug formularies (often times more restrictive than ADAP drug formularies), mail-order pharmacy requirements, or providers being out-of-network. The ongoing challenges also remain with insurance carriers dropping plans under the ACA's marketplace. Some potential strategies to combat challenges created by the uncertain insurance market included state health departments leveraging existing relationships with insurance carriers, as well as increasing peer-to-peer education. The National Alliance of State & Territorial AIDS Directors ("NASTAD") has made available several important resources to help state health departments and Ryan White Programs navigate the Medicaid expansion landscape.

Medicaid expansion in Virginia has raised some important questions, including transitions for existing ADAP clients, access to care with Medicaid Managed Care Organizations, and upcoming Medicaid work requirements. “The Graying of HIV” was central throughout the Medicaid expansion discussion.

The following materials were shared with retreat attendees:

• Kaiser Family Foundation: Medicaid and HIV
• The Body: What Medicaid Work Requirements Might Mean for People With HIV
• Daily Press: It will be years before Virginia Medicaid program makes people work, and Republicans aren’t happy (May 22, 2019)
• HIV/AIDS Bureau Policy: Clarifications Regarding the Use of Ryan White HIV/AIDS Program Funds for Health Care Coverage Premium and Cost Sharing Assistance

The ADAP Advocacy Association would like to publicly acknowledge and thank Kathleen for facilitating this important discussion.

Ryan White Program:

The Ryan White HIV/AIDS Program was discussed as a follow-up to the Michigan Fireside Chat, mainly as it relates to the Administration's plan to End the Epidemic by 2030 (EtE) initiative. As a foundational point for this discussion, some important facts were shared on why is the Ryan White Program needed if people with HIV have health insurance coverage, especially its role in leading the way in getting people with HIV virally suppressed by ensuring stable access to HIV primary care and medication, along with critical support services. Some of the issues touched upon included the impact of the uneven Medicaid expansion landscape from state-to-state, ADAP-funded insurance premium assistance, and mental health.

The EtE's targeted approach focuses on 46 counties in the United States, which account for over half of the new infections (there are over 3,000 counties nationwide). It was widely recognized that the plan does include a significant down payment to fund the initiative, but concerns linger over the ongoing assault on the Affordable Care Act. The Administration's plan also provided the opportunity to evaluate the ongoing rise in sexually transmitted diseases, which include worrying trends (22% increase in Chlamydia, 67% increase in Gonorrhea, and 80% increase in Syphilis). Additionally, PrEP was discussed as a way to improve population-level outcomes.

Photo Source: CDC

Finally, there was considerable discussion over the emerging controversy surrounding the use of cluster detection to pinpoint HIV hotspots. Whereas many health departments and public health professionals applaud using cluster detection (described as a tool), many patient advocates and people living with HIV/AIDS are increasingly alarmed over it. Emerging concerns include privacy, stigma, and criminalization.

The following materials were shared with retreat attendees:

• What is ‘Ending the HIV Epidemic: A Plan for America’?
• HRSA Congressional Justification, FY 2020: See Ryan White Program section, pages 228-265
• ACHIEVING SUFFICIENT SCALE OF PrEP USE IS CRITICAL TO ENDING THE HIV EPIDEMIC
• THE US STI CRISIS
• USING CLUSTER DETECTION TO END THE HIV EPIDEMIC

The ADAP Advocacy Association would like to publicly acknowledge and thank Jeffrey for facilitating this important discussion.

Patient Assistance Programs:

Earlier this year the Patient Advocate Foundation ("PAF") blogged about Navigating the Costs of HIV Care – Conversations, Resources & Patient Experience, which summarized two online survey assessments of patients to identify root causes of financial toxicity including preferences towards cost conversations, degree and sources of financial stress. These surveys provided an important backdrop of this discussion about patient assistance programs ("PAPs").

The complexity of the nation's healthcare system and safety net programs often create "gaps" and the potential for patients to fall through them, thus losing access to timely, appropriate care and treatment. PAPs often provide the necessary resources to fill many of the care and treatment gaps. Some of the programs discussed included co-payment relief programs, case management services, and patient navigator programs.

Photo Source: PAF

Questions asked included what are manufacturer free drug programs and how do they operate, what are Coupon Cards and how do they work, and what is the difference between a manufacturer free drug program and charitable co-pay programs? Aside from the services provided by PAF, other patient resources offered by different organizations were also discussed, including the PAN Foundation, NeedyMeds, and PhRMA.

The following materials were shared with retreat attendees:

• Who Provides Patient and Health Advocacy?
• Ten Key Skill Sets of Health Care Advocates
• How a Patient Advocate Helps You Navigate the Medical System
• Patient advocates’ role expands to meet healthcare’s increasingly complex demands
• Patient Advocacy for Beginners
• HIV, AIDS & Prevention CareLine
• Hepatitis C CareLine

The ADAP Advocacy Association would like to publicly acknowledge and thank Alan for facilitating this important discussion.

Additionally, a special thank you is extended to Diana Jordan, Kimberly Scott and the entire Virginia Department of Health for their assistance during our stay in Richmond, VA.

Additional 2019 Fireside Chats are planned in New York, New York.