An Expression of Support for Basic Human Decency

By: Brandon M. Macsata, CEO, ADAP Advocacy Association & Jen Laws, President & CEO, Community Access National Network

Earlier this week, ADAP Advocacy Association and Community Access National Network (CANN) issued a joint statement announcing an embargo of each respective organization’s patient advocacy and education activities within the state of Florida. Both organizations also cited a need to protect advocates and patients from outside of the state from the very real dangers associated with traveling to the state, while also emphasizing that both organizations will continue to support local advocates in the state as they work to create positive public policy changes for Floridians living with HIV. The decision to adjoin both the ADAP Advocacy Association and the Community Access National Network to the previously issued formal travel advisory by the NAACP wasn’t taken lightly because maintaining strong ties to the community is important in generating effective advocacy. The move was not a political statement either, but rather an expression of support for basic human decency.

The announcement comes after the state’s governor, Ron DeSantis, signed into law a series of bills targeted toward harming Black, Brown, LGBTQ+, and immigrant people. The transgender community was probably singled out more viciously than any of the marginalized communities throughout this hate-inspired Florida Legislative Session. Make no mistake about it why this effort to enflame a “culture war” is an issue of organizational values and something quite personal to both of us. The non-trans guy here taking issue with the fact that the trans guy here now cannot take “a leak” without fear of being charged with a felony has nothing to do with politics and everything to do with basic human rights.

The fact is we both previously lived in the state for many years – it’s where we started our HIV policy work, even before we knew one another. It is where we met over a decade ago. Upon reflection, we still can regularly be found discussing mutual friends from Florida, those still living and those who have passed on, in different phases of their lives.  

From recalling Bishop S.F. Makalani-MaHee's testimony to the Florida Legislature in 2016, against a bathroom bill (which failed that year), to his death on Transgender Day of Remembrance in 2017, part of this internal discussion was a reflection on the deep history he had with advocates serving both the Transgender and HIV communities of the state. What we’re witnessing right now in Florida is challenging for us, personally and professionally, but state-sponsored discrimination, hate, and stigma drew a line that cannot be ignored.

In 2017, Human Rights Watch published an important report, Living At Risk: Transgender Women, HIV, and Human Rights in South Florida, and the very same year ADAP Advocacy Association published it’s issue paper, Transgender Health: Improving Access to Care Among Transgender Men & Women Living with HIV/AIDS Under the AIDS Drug Assistance Program. Both of us worked on the ADAP project, and it was important for a transgender advocate (Jen) with lived experience to lead in writing model policies meant to serve Transgender People Living with HIV. The decision to issue a travel advisory in Florida for people living with HIV is rooted in disparities and areas of improvement emphasized in those two reports.

Photo Source: ADAP Advocacy Association

Much of our hearts belong to Florida for the dedication and innovation the people of this state can and do offer, despite every unnecessary public policy challenge they face. People like Mick Sullivan and Donna Sabatino (formerly with Tibotec Therapeutics), Connie Reese and her amazing work with Simply Amazing You Are (SAYA) in Miami-Dade County, Riley Johnson promoting trans equality in accessing medical care via RAD Remedy, Michael Ruppal’s leadership with The AIDS Institute, and the late Tiffany Marrero, who served to voice the experiences of vertical transmission patients and Black Women and only recently left us. Heck, Trelvis Randolph and Maria Mejia both reside in South Florida, and they serve on CANN’s board of directors. These folks not only are colleagues, but they are friends and expressing concern over traveling to a place once call “home” saddens us.

But some things are larger than us. Recognizing the inherent roots of racism, which has prompted the NAACP to issue a travel advisory, our joint statement read, in part:

The state of Florida's moves to harm Transgender people, Black and Brown communities, and immigrant families undermines the exceptional work the state's Health Department has done in the last several years and only serves to further existing health disparities affecting these communities, particularly as it relates to HIV. For example, according to Florida's own data, while Black and Hispanic/Latino communities make up about 15.6% and 26.7% of the state's population, respectively, these same communities represent 37.7% and 39.6% of HIV diagnoses. Put another way, in Florida, while white people experience a rate of HIV diagnoses of 8.5 per 100,000 people, that rate among Black communities is 51.8 and for Hispanic/Latino communities it's 31.7.

Similarly, Florida has, in years past, made extraordinary strides in ensuring transgender people can access HIV related care, specifically by integrating best practices and guidance from the Health Resources and Services Administration (HRSA) on integrating gender affirming care into HIV care provision. Indeed, as a result of these moves, transgender women represent some of the greatest successes in linkage to care, retention in care, and viral load suppression of any demographic in the state. Recently signed bills prohibiting state contracted clinics from providing gender affirming care will have a dramatic affect in reversing these long sought after wins. 

Make no mistake, we are frustrated with an apparent lack of involvement from the federal agency charged with implementing the Ryan White HIV/AIDS Program. Because Ryan White program dollars are passed through the state and then contracted with counties, local areas, or directly with a provider, and because other health initiatives of the state are also part of how providers in Florida acquire funding to provide public health services, they may be prohibited from providing gender affirming care at all - regardless of where those dollars originate (state or Federal).

It is incumbent upon HRSA to provide guidance beyond ‘allowable’ uses and inform that state it has contractual, fiduciary responsibilities associated with its grant and subrecipient contracts to ensure these dollars serve these communities. HRSA must move beyond the language of ‘allowable’ uses to ‘expected integration of best practices.’

In many situations, we have been willing and able to confront harsh environments. Indeed, we recognize the need to be present in the spaces where political forces wish to silence us. However, Florida has crossed a line in becoming hostile to the very existence of Black and Brown and Immigrant and Transgender people, those same communities most affected by HIV. The people who enacted these hateful laws were motivated by hateful politics; our response is motivated by concern for the people we’re charged with representing in our community…many of whom feel silenced. This is a line which we cannot cross and still consider ourselves as living the values we espouse.

We came to the difficult decision that neither the ADAP Advocacy Association or Community Access National Network will host any advocacy or educational event in the state of Florida. We will continue to support local advocates and people living with HIV residing in the state, including scholarship support for intrastate travel by local advocates. We will continue to offer analysis on the state's activities. But we will not ask advocates from outside of the state to risk their mental health or physical safety to travel to the state.

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.

New CDC Surveillance Reveals Risks Among Transgender Women, Including HIV

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

On April 15, 2021, the U.S. Centers for Disease Control released a new special report on HIV infection, risk, and tertiary issues impacting transgender women. The report included a literature review and community survey among 1,608 self-identified transgender women in 7 US cities (Atlanta, Los Angeles, New Orleans, New York City, Philadelphia, San Francisco, and Seattle), which was conducted between late 2019 and early 2020.

The findings of the report could be considered startling to those unfamiliar with HIV data among transgender populations. However, advocates for transgender equality have been shouting about this issue for years. Despite the CDC issuing guidelines for collecting data on transgender people in 2015, many state and local health departments were slow to implement this guidance; from debate on language to a grueling process in the massive undertaking to update official HIV screening forms. Further down the “food chain”, contract providers did not necessarily have the funding to reprogram electronic health records to reflect collecting this information or did not prioritize doing so. As a technical issue, this is the least of concerns in reaching out to transgender people. Cultural competency is lacking, programs directed toward transgender people may be managed by cis gender people, creating a disconnect between the experience of a target audience and program design. The Denver Principles demand “nothing about us, without us” and, even in HIV, this part gets forgotten about when establishing or operating transgender programs.

Photo Source: CDC

Back to the CDC’s findings.

The special report found an HIV prevalence of 42% among participants with a valid HIV screening within the last 12 months (note: 3% of participants did not have a valid HIV screening within the last 12 months, all findings are self-reported). Of those tested, along race and ethnic identity, the highest rates of HIV prevalence were among Black (62%), Hispanic/Latina (35%), and American Indian/Alaska Native (65%) transgender women. The cities with the highest prevalence were Atlanta (58%), New York (52%), and Philadelphia (51%). Of prevention activities, participants were generally well-educated regarding pre-exposure prophylaxis (PrEP) at better than 90% overall, however, uptake was lagging at around 30%. Participants cited medical mistrust due to incidents of transphobia in medical settings, lack of information regarding interactions with gender-affirming hormone therapies, and lack of trans oriented PrEP marketing materials. 63% of self-reported HIV-positive participants reported receiving HIV related care within 1 month of diagnosis and 89% having received care within the year prior to interview. 

The most stunning findings of the study include 63% of participants reporting living at or below the federal poverty level and 17% being uninsured. As a result, unsurprisingly, 42% of participants had experienced homelessness in the last 12 months. The statistic that should receive the greatest attention but - also unsurprising as 2020 was the worst year on record for anti-transgender violence in the US – 54% of participants reported having experienced verbal abuse or harassment as a result of their gender identity. Additionally, 15% of participants reported having experienced verbal threats or physical attack resulting in rape.* 

*Editor's Note: the report refers to “forced sex” – this author will not coddle this experience. “Sex” without consent, either by force, threat, or coercion, is rape.

Advocates, myself included, argue the Trump administration’s anti-transgender agenda released a social contagion of permission to enact violence against transgender people, Black transgender women in particular. Despite the precedent set by the Supreme Court’s Bostock decision in 2020, several states have decided to make 2021 a record-breaking year in introducing anti-transgender legislation. Again, experienced advocates expect this pattern to result in more violence against us. 

This is of particular note, given the CDC’s report cited medical mistrust due to experiences of transphobia in medical settings. 

Small, yet meaningful steps that can be taken in the immediate: both private and public funders must change the metrics in which they consider funding transgender programming and acceptable “competency”. Funded entities must conduct transgender cultural competency at onboarding of all staff and at least once annually and demand their staff satisfy a post-training assessment as part of their employment. Funders must require these metrics in order for an entity to receive funding. Entities should not be “developing” new transgender programs but courting existing trans led by-for organizations to manage trans oriented HIV programing. 

The Denver Principles were meant for all of us, every one of us, every piece of us. And beyond our status we have failed to implement these cornerstone values into our HIV prevention efforts and care programs. 

For providers seeking resources on trans oriented HIV prevention materials, the CDC provides model materials at no cost to providers via the CDC’s Let’s Stop HIV Together campaign. You can order these and other materials here.

Additionally, "TRANSGENDER HEALTH: Improving Access to Care Among Transgender Men & Women Living with HIV/AIDS under the AIDS Drug Assistance Program" are educational resources published by the ADAP Advocacy Association. They include an infographic, and a policy white paper.

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. 

Biden & Science Win; Trump & Stigma Lose

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

On Saturday, November 7th at 11:25 AM Eastern Standard Time, people living with HIV/AIDS breathed a collective sigh of relief as the Associated Press called the 2020 Election, and recognized Joseph R. Biden, Jr. as the 46th President-Elect of the United States. In that very moment, science bested stigma. The electoral landslide turned the page on a dark chapter in this nation's history. As a 501(c)(3) nonprofit organization the ADAP Advocacy Association stayed neutral during the election for obvious reasons, but we welcomed the news with open arms!

Soon to be gone are Donald J. Trump's constant attacks on vulnerable populations disproportionately impacted by HIV/AIDS - such as the LGBTQ community, Muslims, racial & ethnic minorities, and immigrants. They will be replaced by compassion, empathy, and a keen understanding that sound public health policies are rooted in science.

Since 2016, HIV-related stigma was fueled by government sanctioned healthcare discrimination, eliminating most non-discrimination protections, and the discharge of military service members living with HIV/AIDS, only naming a few. Not to mention there were numerous misguided public health changes harmful to the HIV community driven by politics rather than sound policy, such as drug importation, pro-insurance co-pay accumulator regulations, raiding Ryan White funding for immigrant deportation, and proposed budget cuts. And don't forget how Trump’s anti-FDA Tweets undermine public health!

And that doesn't even consider the nearly 250,000 deaths due to COVID-19 resulting from Trump's lack of presidential leadership. But our nation's poor response to the coronavirus didn't come as any surprise considering that Trump tapped anti-LGBTQ, anti-science Vice-President Mike Pence. After all, Pence was the same guy who, as Indiana's Governor, oversaw one of the Hoosier State’s worse HIV outbreaks in the state's history.

But all of that darkness is about to change...

Starting on January 20, 2021, a brighter future awaits the LGBTQ community under the Biden-Harris Administration's commitment to advance equality. This change alone is significant, considering how new HIV-infections continue to disproportionately impact much of the LGBTQ community. Since the 1990s, President-Elect Biden has been a strong supporter of the Ryan White HIV/AIDS Program and its AIDS Drug Assistance Program, as well as a staunch ally of President George W. Bush's President’s Emergency Plan for AIDS Relief (PEPFAR). 

Jirair Ratevosian, M.P.H., who served as the Legislative Director for HIV/AIDS Caucus Co-Chair Rep. Barbara Lee, summarized Biden's support for HIV-related causes (The Body, 2020):

"The vice president’s prioritization of HIV/AIDS programs continued after his Senate career. The Obama-Biden administration delivered major advances in prevention and treatment efforts for people living with HIV. The Affordable Care Act (ACA) assisted Americans living with HIV by eliminating preexisting conditions and provided them with much-needed health insurance. In addition, the Obama-Biden administration eliminated the entry ban for tourists and immigrants living with HIV; ensured HIV testing would be covered under the ACA; implemented a comprehensive National HIV/AIDS Strategy; and directed federal agencies to examine the intersection of HIV with violence against women and gender-related health disparities. The programs under ACA had an important impact on addressing HIV prevention and treatment in communities of color."

Biden has made his intentions clear: "You deserve a partner in the White House to fight with conviction and win the battles ahead. Together we’ll pass the Equality Act, protect LGBTQ+ youth, expand access to health care, support LGBTQ+ workers, win full rights for transgender Americans, recommit to ending the HIV/AIDS epidemic by 2025, advance LGBTQ+ rights around the globe, not just at home" (Artavia, 2020). 

Women - especially women of color - will also have a brighter future under the Biden-Harris Administration. Vice-President-Elect Kamala Harris will be well-positioned to ensure more is done for African American women and Latina women, who as we all know are disproportionally impacted by HIV/AIDS in the United States.

Biden's record on public health isn't perfect, but it is far better than what we've witnessed the last four years. The ADAP Advocacy Association stands ready to aid the Biden-Harris Administration's efforts to return our nation's HIV epidemic response to science-based policies.

References:

• Artavia, David (2020, September 25). Joe Biden Recommits to Ending HIV, Passing Equality Act, LGBT+ Rights. Out. Retrieved online at https://www.out.com/politics/2020/9/25/joe-biden-recommits-ending-hiv-passing-equality-act-lgbt-rights. 
• Ratevosian, Jirair (2020, July 27). Joe Biden Is Our Strongest Option to End the HIV Epidemic. The Body. Retrieved online at https://www.thebody.com/article/joe-biden-strongest-option-to-end-hiv-epidemic.

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. 

Missouri Governor Issues Proclamation on HIV/AIDS

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

In a recent proclamation by Republican Missouri Governor Michael L. Parson, the month of April was designated HIV Awareness Month. He is the first governor to issue a proclamation acknowledging the national "Ending the HIV Epidemic: A Plan for America." The Missouri proclamation references testing (diagnosis), treatment and prevention.

The Ending the HIV Epidemic ("EHE") plan - announced in 2019 - was developed by agencies across the U.S. Department of Health and Human Services (Offices of Infectious Disease). EHE provided 57 geographic focus areas where HIV transmission occurs at a high rate, and Missouri is one of only seven entire states that is a jurisdiction of focus. The goal of the EHE is to reduce new HIV infections by 75% by 2025 and by at least 90% by 2030 by focusing on four pillars: prevention, diagnosis, treatment, and outbreak response by working with programs, resources and the infrastructure of HHS agencies and offices nationwide (Offices of Infectious Disease).

Nationally, HIV/AIDS Awareness Month is usually recognized in December, but Governor Parson chose to hold the month of recognition in April. Missouri has 447 annual HIV diagnoses as of 2018 and estimates 12,529 total people living with diagnosed HIV. However, only 87% have knowledge of their HIV status, leaving many more individuals who may be living with the virus and completely unaware (CDC).

When left undiagnosed, HIV positive individuals can transmit to others unknowingly and the virus may progress within their own bodies to the point of serious consequences. Governor Parson addresses diagnosis in his proclamation as one of the four pillars vital to addressing the HIV epidemic in America.

A resolution in support of the HIV Viral Load Suppression in Improving Health Outcomes and Reducing Transmission was adopted by many members of the National Lieutenant Governors Association ("NLGA") in March of 2019. State governors who sponsored the resolution included Wisconsin, Hawaii, Delaware, Missouri, Virgin Islands, Kansas and Vermont.

The sponsorship of Missouri’s Lt. Governor Mike Kehoe may have helped to push the Missouri Governor’s recent proclamation to light and stressed the importance of HIV awareness. The NLGA resolution reads, in part:

“Whereas, over 1.2 million people living in the United States are infected with HIV, and one in eight is unaware of the infection… Whereas, viral load suppression not only improves individual health, but it also reduces HIV transmission on a population level.” (2019, March)

By addressing the HIV epidemic on a state level and national level, progress will begin to accelerate in each state. Missouri’s Governor has set a great example to other states on how to begin addressing the HIV Epidemic and bring awareness to a virus that had such a “taboo” stigma surrounding it for many years. Many advocates believe this proclamation will save lives and help de-stigmatize HIV for those who still may hold certain negative views around the virus and those who are living with it.

Since 1981, more than 700,000 Americans have lost their battle to HIV (Offices of Infectious Diseases). While the numbers of infections and deaths have declined over the years with the increase of HIV education, the issue remains: those who may spread the virus without knowledge. I truly believe that both the Missouri and National plan to stop the spread of HIV and better educate the general public on the virus will help to destigmatize the disease and help lower the number of cases nationwide.

References:

• Geographic Priorities. (2020, May 21). Retrieved from https://www.cdc.gov/endhiv/priorities.html?CDC_AA_refVal=https://www.cdc.gov/endhiv/data.html
• Office of Infectious Disease. (2020, May 8). Overview. Retrieved from https://www.hiv.gov/federal-response/ending-the-hiv-epidemic/overview
• Resolution In Support of HIV Viral Load Suppression in Improving Health Outcomes and Reducing Transmission. (2019, March). Retrieved from https://nlga.us/wp-content/uploads/Resolution-In-Support-of-HIV-Viral-Load-Suppression-in-Improving-Health-Outcomes-and-Reducing-Transmission-2.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.

Implications of Co-Occurring Diagnosis of a Mental Condition and HIV/AIDS

By: John Williamson, intern, ADAP Advocacy Association, and candidate for Masters in Social Work

According to the National Institute of Mental Health, there are approximately 46.6 million adults in the United States who experience mental health conditions at any time in a given year (2017). People who live with mental health conditions are amongst the most vulnerable populations in our communities. In comparison to the general population, people with mental health conditions are at a higher risk for substance abuse disorders including IV drug use, homelessness, victimization, incarceration, engagement in “unsafe” sexual behaviors, and are more likely suffer from chronic medical conditions (J.Parks, 2006). In 2017, the National Alliance on Mental Illness in conjunction with the National Institute of Mental Health compiled the following data:

• Among 20.2 million adults in the United State who experienced substance abuse; about half of them (10.2 million) were diagnosed with a co-occurring mental illness.
• About 26% of homeless adults living in shelters live with a serious mental illness and 46% are living with a co-occurring serious mental illness and chemical addiction.
• Approximately 20% of state prisoners and 21% of local jail prisoners have a recent history of a mental health condition.
• People who are living with a serious mental illness die on average 25 years younger due to treatable medical conditions.
• Serious mental illness costs Americans $193.2 billion in lost earnings per year.

Photo Source: Patheos

People who are living with a mental health diagnosis have many challenges including symptom management, negotiating the disclosure of their diagnosis due to stigma, access to quality care, training, and education. For individuals who live with mental health conditions, these challenges are significant; yet, for those who have a co-occurring mental health condition and are HIV positive, these challenges can become more difficult to manage. The co-occurrence of a mental health condition and HIV is a public health issue that is important to discuss as it poses challenges for both those who have the diagnosis as well as the persons who are caring for and/or treating them.

Research has found considerable overlap between many mental health disorders and HIV infection. A multi site cross sectional study estimated that individuals who are receiving care for a mental health condition are four times as likely to be living with HIV as compared to the general population (M.Blank et al., 2014). The American Psychiatric Association and Office of HIV Psychiatry reported results from a study that found 19% of males involved in psychiatric care were HIV positive and of 320 patients between the ages of 20 and 40, AIDS was the leading cause of death (2012). In many cases, people with mental health difficulties are also diagnosed with a substance use disorder, amplifying the challenges of treatment and management of their mental and physical health (Parry, Blank, & Pithey, 2007). The Centers for Disease Control and Prevention found that approximately 1 in 10 new HIV diagnoses were due to IV drug users. Kidorf et al., (2004) conducted a study to identify co-morbidities in heroine users at a Baltimore needle exchange. The research found that over 50% of intravenous drug users had a co-occurring Axis I mental health diagnosis. Along with IV drug use, the abuse of illicit substances has also been linked to the increase risk of “unhealthy” sexual behaviors, both of which are cofactors in the risk of HIV transmission.

Access to care is a significant factor when understanding the comorbidity rates of mental illness and HIV infection. The National Alliance on Mental Illness found that only 41% of adults in the United States who have a mental health condition received mental health services in the past year. Of those who received care, African American and Hispanic Americans only received one half the rate of mental health services than that of Caucasian Americans. Individuals who have a mental illness are a largely disenfranchised and vulnerable population who are at a high risk of HIV infection. Research shows a relationship between serious mental illness and low socio-economic status (SES) as well as an increase risk of HIV transmission among lower SES persons due to the concentration of high risk populations (Parry, Blank, & Pithey, 2007). It is the recommendation of the United States Preventative Task Force, that all high-risk persons are tested for HIV at least annually. However, a recent study by found the following results:

• 6.7% of individuals receiving mental health services were tested for HIV infection. 
• Men were 32% less likely to be tested than women.
• Asian & Pacific Islanders were 53% less likely to be tested than white persons.
• African Americans were 82% more likely to be tested than other race groups (C.Mangurian et al., 2017)

For individuals with a prolonged serious mental condition, the risk of transmitting HIV is greatly increased due to symptoms such as impulsivity, affective instability, and exhibiting poor judgment (D.Moore et al., 2012). Therefore, symptoms can create obstacles to adherence such as disorganized thinking which can make it difficult to follow medical recommendations or paranoia, which could make one fearful of care providers or suspicios of medications. Due to factors such as depression, stress, and treatment adherence, which also hinder the immune system, people with serious mental conditions are associated with a more rapid progression of the HIV infection (Leserman, 2003).

Photo Source: Canadian AIDS Society

It is important for both providers who are treating patients with HIV and those treating patients with mental conditions to be aware of the potential co-morbidity amongst the populations. Through understanding the likelihood of a co-occurring disorder, a provider can be more prepared to partner with their patients and other providers in addressing both conditions and improving their potential for healthy outcomes. It is also important that providers are asking patients if they would like to be tested for HIV as both a concern for the individual and for public health. The research shows that people with mental conditions and HIV are at greater risk for negative outcomes; therefore, we must offer a greater quality of care for patients. Comprehensive care that requires providers to be attentive to both medical problems and mental health needs in order to address the public health concern that both pose.

References:

• Blank, M., Himelhoch, S., Balaji, A., Metzger, D., Dixon, L., Rose, C., Oraka, E., Davis-Vogel, A., Thompson, & Heffelfinger, J. (2014). A multisite study of the prevalence of HIV with rapid testing in mental health settings. Am J Public Health. DOI: 10.2105/AJPH.2013.3016
• Centers for Disease Control & Prevention, “Injection Drug Use and HIV Risk”, March 2019; Retrieved from https://www.cdc.gov/hiv/risk/idu.html
• Kidorf, M., Disney, E., King, V., Neufeld, K., Beilenson, P., Brooner, R. (2004). Prevalence of psychiatric and substance abuse disorders in opioid abusers in a community syringe exchange program. Drug Alcohol Dependency, 74, 115 - 122
• Leserman, J. (2003). HIV disease progression: Depression, stress, and possible mechanisms. Journal of the Society of Biological Psychiatry, 54 (3), 295 – 306
• Mangurian, C., Cournos , F., Schillinger, D., Vittinghoff, E., Creasman, J., Lee, B., Knapp, P., Fuentes-Afflick, E., & Dilley, J. (2017). Low rates of HIV testing among adults with severe mental illness receiving care in community mental health settings. Psychiatric Services, 68, 443-448
• Moore, D., Posada, C., Parikh, M., Arce, M., Vaida, F., Riggs, P., Gouaux, B., Ellis, R., Letendre, S., Grant, I., & Atkinson, J. (2012). HIV infected individuals with co-occurring bipolar disorder evidence pooor antiretroviral and psychiatric medication adherence. AIDS Behavior, 16 (8), 2257 – 2266 
• National Alliance on Mental Illness. (2019). Mental health by the numbers. Retrieved from https://www.nami.org/Learn-More/Mental-Health-By-the-Numbers
• National Institute of Mental Health. (2017) Mental Health Information. Retrieved from https://www.nimh.nih.gov/health/statistics/mental-illness.shtml
• Parks, J., Svendsen, D., Singer, P., Foti, M. (2006). Morbidity and mortality rates in people with serious mental illness. National Association of State Mental Health Program Directors. Retrieved from https://nasmhpd.org/sites/default/files/Mortality%20and%20Morbidity%20Final%20Report%208.18.08.pdf 
• Parry, C., Blank, M., & Pithey, A. (2007). Responding to the threat of HIV among persons with mental illness and substance abuse. Current Opinion in Psychiatry, 20, 235 – 241
• United States Preventative Services Task Force (2019). Human immunodeficiency Virus Infection: Screening. Retrieved from https://www.uspreventiveservicestaskforce.org/Page/Document/RecommendationStatementFinal/human-immunodeficiency-virus-hiv-infection-screening#consider

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.

When State & Local Public Health "Policies" Fuel HIV Stigma

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

For those of us living with HIV-infection the stigma associated with the condition is always evident. Always! It is visible on dating Apps with profiles using the word "clean" to describe serostatus; it is visible on certain pharmaceutical commercials with disclaimers that the medication doesn't protect against HIV (Viagra1, NuvaRing2); it is visible in the criminal justice system with archaic HIV Criminalization laws. But most troubling sometimes is when state and local health departments contribute to fueling HIV stigma with their reporting and health counseling policies. North Carolina (my home) is no exception.

First of all, let me begin by saying that I nothing but the utmost respect for the dedicated people who work in state and local health departments, including the North Carolina Department of Health & Human Services ("NCDHHS"). They often work tirelessly to promote public health, as well as ensure the delivery of the much-needed public health safety net programs designed to help people most in need. But that doesn't mean I cannot call a spade a spade when their reporting and health counseling "policies" do more harm than good.

Take for example what happened to me this week. The following summary captures how state and local public health "policies" can most certainly fuel HIV stigma:

__________

Every six months my Infectious Disease doctor (who is based in Washington, DC) shares my medical records and blood work with my Primary Care doctor in North Carolina. As such, it triggers contact by a public health counselor working at NCDHHS to discuss my health status. My health care is paid for by private insurance funded for by my employer, and not a state-funded program such as Ryan White or Medicaid, mind you. It seems to me that such "follow-up" activity funded by already limited public health budgets would be better directed at the underserved communities who we all acknowledge fall through the cracks of our public health system, such as formerly incarcerated inmates living with HIV/AIDS or transgender men and women living with HIV/AIDS. That's another argument for another time.

The NCDHHS public health counselor, who we will call "John Doe" as not to embarrass him, left me a voice message at 3:48 PM on Monday (04/29) saying,"I have an important health matter to discuss with you." Knowing what it was about, I went about my day and I didn't rush to return the call. Less than an hour later (52 minutes, to be exact), John Doe shows up unannounced at my apartment building (which has restricted fob access for the elevators). I wasn't home, so he entered the leasing office for assistance. According to the wonderful ladies working in the leasing office, John Doe proceeds to insist that they let him upstairs to my apartment after identifying himself as working with NCDHHS. They kindly declined, and text me to ask if I was expecting anyone from the state (...thinking maybe it was a social worker doing an adoption home visit follow-up). Upon replying to the leasing office that it was not any such adoption home study follow-up visit, they once again declined to grant access to the resident floors. Then, John Doe proceeds to leave with them a sealed envelope addressed to me (letter, as seen herein).

An unscheduled visit to my home, such as the one conducted by John Doe, is the sort of thing that fuels HIV stigma because it leads to whisper campaigns. Make no mistake, it was a compete invasion of my privacy under the guise of promoting public health. That is bullshit (excuse my language)! Fortunately, I'm very open about my HIV status with family, friends, colleagues, and strangers so John Doe's uninvited and unscheduled visit to my home had no negative repercussion. His visit, nonetheless, did lead to lots of questions and concerns by the apartment building's staff (...again, thinking it was adoption-related). Enter how rumors are spread, which can include HIV-related stigma.

Many people living with HIV-infection might not be able to say the same thing. In fact, I know for certain that MANY of my fellow brothers and sisters would have been in a very precarious situation if the local health department had invaded the privacy of their homes. Such moves should raise cautionary alarms not only for those of us living with HIV, but anyone fighting to end the epidemic.

The saga, unfortunately, didn't end there because John Doe would once again call me on Wednesday (05/01). Upon missing his call, I did return his call to address what had transpired earlier in the week. John Doe identified himself and then asked me to confirm certain identifiable information, such as my date-of-birth. Before starting his spiel, I told him that his health counseling was appreciated but not necessary and also thanked him for his time. But John Doe insisted on reading his spiel to me. Then, he asked me, "Are you planning to continue your care with the Infectious Disease doctor in Washington, DC?" My response probably wasn't expected by him. I simply said, "John Doe, with all due respect, I don't think that is any of your business nor is it the business of the State of North Carolina where I go for my health care." John Doe then had the audacity to call me "rude" and also remind me that I was living with a "communicable disease" - as if I had somehow forgotten about the HIV diagnosis given to me some 18 years ago. No shit, Sherlock (again, excuse my language)!

If rubbing my face in my HIV status doesn't fuel HIV stigma, then I'm not sure what does. Needless to say our conversation went downhill from there, and it ended with my hanging up on him.

__________

Don't get me wrong, I fully support policies aimed at linking patients to timely, appropriate care and treatment for any condition (including HIV). But the way some health departments, in general, and this public health counselor, in particular, handle their federal- or state-mandated responsibilities leaves a lot to be desired. I can only imagine how what happened to me would have played out with some of my brothers and sisters in marginalized communities. The fact is it DOES happen every single day across this country, especially in rural communities.

Photo Source: wehoville.com

Marcus J. Hopkins, who is also a long-term survivor and a respected public health policy consultant residing in rural West Virginia, agrees. Hopkins said, “In many Southern states and rural areas of the country, Ryan White providers, caseworkers, and staff are already trained to keep the identities of the AIDS Drug Assistance Program recipients hidden, going so far as to arrange off-site meeting places, mailing documents in nondescript envelopes, and going above and beyond to allow people living with HIV to maintain their privacy. State health departments, however, seem not to be as discerning or well-trained, with their focus being trained on preventing infections from spreading. These types of interventions, however, must be handled not with a crowbar, prying off the doors, but with a delicacy the employees often disregard.”

According to Eddie Hamilton, executive director of the ADAP Educational Initiative based in Columbus, Ohio, there is a rush to gather surveillance data and to get newly diagnosed individuals into care, along with genome exploration that expands the ability for public health officials to detect HIV outbreaks, all of the involved parties seem to forget the primary person’s privacy in all of the hoopla...THE PATIENT! Hamilton should know, because as an long-term survivor he has made a name for himself holding Ohio and healthcare providers accountable through successful litigation.

Hamilton's assessment of the HIV stigma implications go even further.

Under the new Federal “End to the Epidemic” initiative, State Health Departments nationwide are now willing to conduct involuntary unconstitutional DNA searches without informed consent or with a demonstration of appropriate safeguards that trample on constitutionally guaranteed privacy and due process rights. Patient’s CD4 counts are already being transmitted to the State Health Department by labs and many of them have no clue that this data has been transmitted by the lab outside of their health care provider/patient relationship. These data exchanges occur on all patients statewide (in many states) no matter who pays for their care (even private pay). Now, they want to expand those transmissions to include DNA sequencing.

"Until the HIV criminalization laws are rolled back, we cannot allow Health Departments to beat us further over the head with this granular data collection that could later be used against us in the future," argued Hamilton. "State Health Departments have devolved into data driven facilities as their grant dollars depend upon the data at the expense of a person’s privacy and the absolute right to know who has access to their personal health information data and how that data is used. It is incumbent upon Health Departments to design and implement the data collection process correctly with full articulation, transparency, data privacy safeguards and within the bounds of the law."

He further contends, new surveillance techniques such as molecular surveillance (i.e. Nucleoside Peptide Sequencing) and any other granular surveillances without informed consent will not withstand guaranteed State and Federal constitutional challenges as they are generally considered impermissible searches without a warrant (a requirement of the Fourth Amendment of the U.S. Constitution) unless a public health emergency has been declared. Many of the newer protocols also do not consider existing HIV Criminalization laws and how this granular information could be used in the prosecution of individuals.

With the recent privacy breaches of personal identifiable information in California, New Jersey and Ohio impacting people living with HIV/AIDS - including ADAP clients in these states - concerns over HIV stigma can never be overlooked or brushed aside. Though in my recent situation, John Doe didn't violate my confidentiality he most certainly creep his way into my privacy by showing up at my home...unannounced! Leaving a letter with leasing staff certainly could have further violated my privacy if someone other than me had opened it. And again, reminding me that I'm living with a communicable disease was a low blow especially coming from someone who purports to be a "counselor" by profession.

Interestingly enough, Ohio's Supreme Court seems to agree with the concerns expressed by myself, Mr. Hopkins, Mr. Hamilton, as well as countless people living with HIV/AIDS. The Ohio Supreme Court made it clear that purposes of the breach of medical confidentiality tort, the focus is on the patient's wishes, as "it is for the patient - not some medical practitioner, lawyer, or court - to determine what the patient's interests are with regard to personal, confidential medical information."3


__________
[1] McCann Erickson Ad Agency (2014). Viagra TV Commercial, 'Cuddle Up'. Retrieved online at https://www.ispot.tv/ad/7Ebe/viagra-cuddle-up.
[2] Ingenuity Studios. (2016). Monday Tuesday Wednesday. Retrieved online at https://vimeo.com/162745160.
[3] Biddle v. Warren Gen. Hosp., 86 Ohio St.3d 395, 1999-Ohio-115. Retrieved online at http://www.supremecourt.ohio.gov/rod/docs/pdf/0/1999/1999-Ohio-115.pdf.

Reflections from an HIV Advocate's Journey: Lisa Johnson-Lett

By: Lisa Johnson-Lett, Treatment Adherence Specialist & Peer Educator, AIDS Alabama

Finding voice in a world paralyzed yet infiltrated by noise of polluted air there is nothing sound or authentic! When talking about advocacy we are constantly developing voice to rid pollutants speaking to communities in First People Language; redeveloping valued principles like, Denver (The Denver Principles), while speaking truths and giving power to words.

All my life I’ve been trying to find my voice. Afraid of mankind, having lost trust because of mistrust in people. Diagnosed in 1995 while enlisted in the U.S. Army (fighting for county), I did not fight for myself. I was twenty years old, and I felt my life was in ruins.

My childhood sweetheart who I trusted assisted in my sero-conversion. I am not angry, never was (it’s not my personality) but I experienced much sadness that turned into depression because people were not using first people language. I developed internal and external stigma. I became my own worst enemy, yet I had to figure out relationships and where I stood as a person now living with HIV. I feel my traumatic experiences in life developed a pathway for the HIV diagnosis.

There are a lot of talk about communities that are targeted and high risks. Born into a world of substance use, both parents affiliated with Heroine and LSD, I became another statistic. African American, infant, female rushed to Mary Immaculate Catholic Hospital in Queens, New York fighting for life. Child in critical condition due to stab wounds in forehead, right side of face, left breast. And cuts on the inside of the uterus. My mother the one who birthed me by nature tried to kill me because the disease of addiction took her mind. I was crying too much (I was hungry). She thought I was Satin, and she tried to kill me. She wanted me to shut up and stop crying. At the age of 14 months I was trying to find voice.

Through my tears and crying aloud, I still serve my HIV community and try and find voice! One of the most pivotal moments in my HIV journey was the “Church”.  Over 20 years, I have been living with HIV and I had attended a church about 17 years into my diagnosis. At that time I was heavily into church and religion and undergoing the Christian values. Very attentive and consistent I vowed to pay my tithes and sit under leadership, yet no one in the congregation knew my diagnostic status. I pondered. I mediated. I remember the scripture, “If there is anyone sick among you bring them to the elders.”

I had been sick for a long time: living in denial, not wanting to take medicine (hoping God would somehow heal me, like he healed the woman with the issue of Blood). I am the woman and the issue of my blood is HIV! I couldn’t stand it any longer. I had attended 3 years of this church! The pastor is my elder and he needs to know!

I questioned myself; how can I sit under his leadership, listening Sunday after Sunday about the Word of God and he doesn’t know my status. I am trusting in Man to deliver sermon over my life and I can’t trust him with the secret of my diagnosis? I got up early one morning and drove 45 minutes to Pastor's house. It was about 8 a.m. when I arrived, and I told Pastor and First Lady (his wife) simultaneously. They immediately embraced me. At that time, I was the Church Secretary and the weekly announcer where I acknowledge birthdays and upcoming events from the pulpit using the microphone (discovering voice). The very next Sunday, different color pieces of masking tape were placed on each Mic. When I came in the doors of the church. I was immediately told by a brother that I will always speak from the mic with the green masking tape. I remained in the setting until 2014 and never looked back.

Today I don’t have to worry about the green masking tape or the mic. It was the worst of times that has molded me to my happy place of today. When things are not going right, I get tired quick. I don’t have time for mess and ignorance. I aim to educate and promote growth through empowerment of change. Advocacy transcends the world. Advocacy is needed at all levels. It took a long time for me to understand that I had a voice to the development of voice and here I am today shaping voice to help someone along the way. To create a hub of understanding that we are not alone and voices carry the message. Advocates give the whispers a voice!

Now, I am the voice. I am the voice to Survivors. I sit at tables because I don’t want to be on the menu. I want to be a part of the decision making process. I have a vested interest in GIPA - the Greater involvement of People Living with HIV. I am a firm believer of the art of reciprocation. I give, yet I receive basking in the glory of happiness and watch people prosper and have growth spurts. It’s a good feeling to have a mentor and be available to mentor someone else. This is paying it forward through advocacy.

Working for the agency, AIDS Alabama, has given me the strength to push pass my pain and provide a glimmer of hope. Kathie Heirs, CEO of AIDS Alabama, once said, "We had a life before HIV." Now, I've reclaimed my life serving as the Treatment Adherence/Peer Support Specialist and providing psychosocial supportive services, conducting HIV testing, partnering with prevention services, and my all time favorite, advocating for others. I represent community and engage with peers as a mentor to show them that we are family and we have voice.

The ADAP Advocacy Association's national advocacy has warranted me the greatest opportunities of networking and building advocacy. Where I used to be a recipient of the AIDS Drug Assistance Program, now I can assist others to receive. I am elated to sit on their board of Directors because their CEO saw potential in me to transcend voice!

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.

Thank You, Ryan White; ADAP Saves Lives

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

The more things change, the more they stay the same.

In 1984, during the midst of the public hysteria over the emergence of AIDS in the United States, it was a 13-year old boy from Indiana who defined the courage of a nation. That young boy's name was Ryan White.

(To learn more about Ryan's story, click here)

Decades later, we honor that young boy from Indiana by celebrating the passage of the law named after him: Ryan White Comprehensive AIDS Resources Emergency (CARE) Act. As the nation's only public healthcare program specifically designed to provide supports and services for people living with HIV/AIDS, it is hard to truly measure the impact it has had in linking patients to timely, appropriate care and treatment. Simply put; it has saved hundreds of thousands of lives since 1990!

A key component of the Ryan White CARE Act is the AIDS Drug Assistance Program (ADAP), which funds access to medications for the treatment of HIV-infection. Amendments to the law over the years have added additional language allowing ADAP funds to be used to purchase health insurance for eligible clients, as well as to pay for services that enhance access, adherence, and monitoring of drug treatments. Today, ADAP serves as model government program.

ADAP enjoys broad bi-partisan support. The program continues to receive more federal dollars annually (albeit far less than what is needed) despite budget austerity in Congress. It is routinely recognized as a cost-efficient, taxpayer-funded program. As recent as last month, we learned that ADAPs have also assisted in the success of the Affordable Care Act's implementation (Editor's Note: read our last blog, 68,000 Patients Obtained ACA Insurance Coverage, Thanks to ADAP).

The virtue's of the law were spelled out in an Op-Ed penned by Sean Cahill, PhD and Kenneth Mayer, MD. They call for additional federal and state funding, more front-line public health training, better culturally competent and nondiscriminatory care, and increased program coordination. The ADAP Advocacy Association agrees!

Yet, despite the progress of the last few decades there still remains an underlying barrier preventing access to care for far too many. That barrier is stigma. It is the very same stigma that Ryan White confronted while attending Western Middle School in Indiana some 31 years ago.

According to the SERO Project, currently there are over thirty States across the nation with "HIV-specific" statutes criminalizing some aspect of HIV/AIDS. Even in States without an HIV-specific statute, people living with HIV/AIDS are still at risk of prosecution under other criminal statutes.

Source: SERO Project

As we celebrate the extraordinary life of a 13-year boy who won over the hearts of a nation (and helped to educate them, too), as well as the law named after him to help the people living with the same disease, let's remember there is much more work to be done!

Thank you, Ryan White!