Daniele Houston of the National Minority AIDS Council (NMAC) hosted an interactive meeting with members of Broward’s HIV infected and affected communities in April. NMAC selected Broward and nine other metro areas. All 10 had high rates of HIV infection and were in states that refused to expand Medicaid. This meeting functioned as a feedback loop between NMAC and Broward. It introduced Broward to NMAC. It also provided NMAC with information about Broward’s HIV epidemic.
First, Houston discussed the HIV epidemic. She focused on gay Black men. Among racial groups of gay men, gay Black men have the lowest risk. Yet, they have highest HIV infection rates. She also spoke about the invisibility of transgender women in HIV reporting.
In the meeting’s second half, Houston listened as people provided their views on Broward’s HIV epidemic. On May 11, Houston returned to Broward with feedback from the April meeting integrated into NMAC’s general understanding.
How HIV Works: The difference between undetectable and suppressed
This workshop also provided an understandable explanation of how HIV works, rejecting overly technical explanations. In Houston’s words, “No one has to understand how the heart works, to take the meds to lower blood pressure.”
Houston described the immune system’s four functions. “If it does not belong, keep it out. If it gets in, eliminate it. If it is broken, repair it. If you have to live with it, control it.” The immune system functions like an army. CD4 cells regulate it, like a general, but HIV targets those CD4 cells. Antibodies kill or neutralize the “invader’, like weapons.
A count of CD4 cells measures the immune system’s strength. A count of the viral load measures HIV’s strength. As one becomes stronger, the other becomes weaker. Even with treatment and a high CD4 cell count, HIV infection produces chronic inflammation. According to Houston, that inflammation contributes to the cancers and heart problems associated with HIV.
Houston clarified how an undetectable viral load differs from a suppressed viral load. The limits of the lab test define undetectability. When moving between states, the capabilities of the labs may change. Someone could have undetectable results in one state and detectable in another. While their viral load remained unchanged, the capacity of the labs differed. According to Houston, Florida’s lab-tests can detect up to 20 viral copies. According to AIDSinfo.hiv.gov, researchers have defined viral suppression as a viral load of less than 200 viral copies per milliliter.
In the developed world, highly active antiretroviral therapy (HAART) has transformed HIV from a fatal disease to a chronic manageable infection. People with HIV need HAART. As Houston succinctly put it, “With untreated HIV, you’re never going to be healthier than you were yesterday.” HAART consists of three or more antiretroviral drugs.
HAART requires strict adherence to a daily treatment routine. Irregular HAART use not only threatens the patient’s health, but also may lead to an antiretroviral-resistant strain of HIV. Drug resistance to an antiretroviral removes that antiretroviral from the potential treatments for HIV infection. Scientists are developing long acting injectable ARVs. It could replace the daily routine of pill taking with monthly visits to a doctor. It could minimize problems with inconsistent or irregular use of HAART.
Houston emphasized PrEP’s importance for all gay and bi men, particularly for gay and bi men of color. She did note two exceptions: people prone to inconsistent PrEP use and people unwilling to undergo PrEP’s regular monitoring. Like HAART, PrEP requires strict adherence to a daily routine of medications. Houston reported that inconsistent PrEP use leads to an unknown level of protection. Over time, inconsistent PrEP use leads to even less consistent PrEP use and no protection. Houston emphasized, “PrEP doesn’t work if it’s not taken.”
As with HAART, researchers are developing a long acting PrEP injectable. This would minimize problems adhering to the daily treatment routine. Houston emphasized that PrEP could only improve, “Now, it’s the worst, and most complex, that it will ever be. It will only get simpler from here.”
Houston described an occasional problem with doctor’s prescribing PrEP. Some doctors are more willing to prescribe PrEP for couples desiring pregnancy than to prescribe PrEP for gay men desiring sexual pleasure. This reveals a clear procreative bias.
Good communication results in health literacy, the ability to exchange useful medical information. Doctors frequently fail to provide meaningful information to their patients. An educational gulf separates provider from patient, but the professional has the responsibility to bridge that gulf. Houston emphasized that “Doctors treat diseases; good doctors treat people.” That commitment to patient centered care lay at the heart of this workshop.
Dynamics of HIV Care Among POC: Social Factors
One slide read, “When you’re born in a world you don’t fit into; it’s because you were born to create a new one.” This slide formed part of the May workshop, ”The Dynamics of HIV among People of Color and Transgender Women.” Danielle Houston of the National Minority AIDS Council (NMAC) and Mike Gipson of Equality Michigan led it.
Houston combined a Broward County specific assessment, with an explanation for high HIV rates among three groups: 1) gay and bi Black men, 2) gay and bi Latino men, and 3) transgender women.
While gay and bi men have the highest proportions of HIV infection, racial differences exist. Strangely, Black gay and bi men have unprotected anal intercourse less often than other racial groups, but have the highest proportions of the infected. HIV reporting further confuses the issue when it mixes the data for transgender women with those for gay and bi men. This inflates the rates among gay and bi men, and makes transgender women invisible.
According to Houston, “social determinants of health” drive these high rates. Determinants include poverty and the availability and affordability of both housing and transportation. Broward specific social determinants include its inadequate public transit, and the clash of its low wages with its high cost of living.
Without valid national data for transgender women, researchers have to estimate social determinants for transgender women. Credible estimates include high stigma, low household income, and greater risks for both homelessness and homicide.
Many social determinants produce feelings of powerlessness. Houston counter-emphasized the strengths of minority communities. When stigma, slights, slurs, rejections, and harassment accumulate, minority stress occurs. People feel inundated with negative messages. People in all minority communities (racial, ethnic, linguistic, and sexual) have survived minority stress. For people with multiple minority identities, minority stress drastically increases. The survival strategies of the past describe how to survive challenges of the future.
Houston reported that local transgender women identified the following local strengths: a large community and excellent doctors. Gay and bi men of color found strength in the solidarity between Black and Latino gay and bi men. People also found strength in families and friends. When people saw themselves reflected among the workers in HIV agencies, they felt strengthened.
Houston reported the following unmet needs in Broward: housing, food, job-hunting skills, and language difficulties. Houston reported that Broward residents had identified the multiple medical, pharmaceutical, dental, and certification appointments, as a barrier to staying in treatment. These appointments require people to take time off from work. Low-wage workers without paid vacation and sick days, loose pay to make these appointments.
Houston also discussed cultural barriers. Some doctors and their staff fail to understand their patient’s culture and the context of their patient’s lives. Their intake forms fail to ask about sexual orientation or gender identity. Some doctors even confuse the two. Transgender women reported that some doctors failed to use their chosen names and pronouns.
Gipson reported that many gay and bi Black men felt racial exclusion in Grindr profiles as well as exotification. Gay and bi Asian-American men developed the term “exotification” to describe a racist erotic fetishization of their bodies. For gay and bi Black men, exotification involves the fantasy of the Well-Hung Black Stud. Both racial exclusion and exotification add to minority stress.
All minorities experience minority stress, but some are more vulnerable than others are. “We’re only as strong as our most vulnerable,” Mike Gipson said about the North Carolina “bathroom bill.” That statement could have served as the theme for the entire workshop.
For more information on NMAC, please visit NMAC.org.
For more information on Equality Michigan, please visit EqualityMI.org.
Strong, Resilient Communities
Black gay men have a 1 in 2 lifetime chance of HIV infection. Latino gay men have a 1 in 4 chance. White gay men have a 1 in 11 chance. Research has yet to find evidence of greater risk behaviors among Black gay men, than among other gay men.
In April Danielle Houston of the National Minority AIDS Council (NMAC) hosted a forum, “Strong Communities.” She presented a sophisticated view about this issue. While Houston focused mainly on Black gay men, she was inclusive of others. Houston introduced several concepts: Resilience, intersectionality, and social determinants. Some people may find these concepts unfamiliar.
The American Psychological Association describes resilience as the ability to adapt well to challenges. These challenges can include problems with relationships, health, and money. Resilience refers to the ability to face difficult challenges and succeed. Emphasizing resilience rejects assumptions that a racial minority community only exists as a collection of problems. It also rejects assumptions that male-on-male sex only exists as a way to transmit disease. These rejected assumptions reflect and reinforce stigma. A resilient approach looks for and builds on already existing strengths.
The Merriam Webster Dictionary defines intersectionality as the complex, overlapping effects of discrimination’s distinct forms. Houston clarified the power dynamics of intersectionality. She said, “Systems of economic inequality, racism, bigotry, homophobia, transphobia, and sexism do not act independently of one another.”
Intersectionality reflects people’s lived experience, but HIV reporting and HIV programs reflect epidemiological risk groups. Non-op transgender women have the same anatomy as men. HIV reporting combines data from transgender women with that from gay men into one epidemiological risk group. In that risk group, “men who have sex with men,” transgender women become invisible. When transgender women become invisible, we lose knowledge of their HIV burden.
The Centers for Disease Control defines social determinants as “Conditions in the places where people live, learn, work, and play affect a wide range of health risks and outcomes.”
Houston listed the following as social determinants of the HIV epidemic: (a) socio-economic status, (b) poverty, (c) transportation, (d) availability and affordability of housing, (e) access to healthcare services, and (f) discrimination and harassment. Each of the above factors produces stressors.
As these stressors combine, they can lead to risk behaviors, heart disease, and other health problems. Many other factors can lead to these health problems, which occur in all types of people. This combination of stressors, however, can amplify these health problems among people who lack power.
In a hierarchy of power, those at the top have buffers to protect themselves. For example, people with power have access to retail, restaurant, movie, and vacation “therapy.” They can also access traditional therapy. People at the top of a power imbalance gather most social “goods.”
Those at the bottom lack those buffers and have less room for “error.” They end up in prison for minor “offenses” like smoking pot. People at the bottom of a power imbalance receive most social “bads.”
NMAC has a three-part strategy to deal with these power imbalances. First, NMAC selects a limited number of cities. Second, NMAC assesses the state of the HIV epidemic in those cities over a period of years. Third, NMAC conducts workshops in those cities, based on those assessments.
For more information on social determinants of health, please visit, CDC.gov/SocialDeterminants
For more information on resilience, please visit APA.org/HelpCenter/road-resilience.aspx
For more information on intersectionality, please visit Washingtonpost.com/news/in-theory/wp/2015/09/24/why-intersectionality-cant-wait