The core of NASTAD’s mission is an unwavering commitment to social justice. We recognize that we will not end the HIV and hepatitis epidemics and related syndemics without dismantling the systems of oppression that fuel racial disparities in access and outcomes. We prioritize fighting injustices where we see them, and we value diversity and inclusivity in all forms. In 2016, NASTAD released the “NASTAD’s Commitment to Black Lives” statement, which stated, “racism has imprinted a legacy of systemic injustices against Black people in the United States. The pervasive undercurrent of white privilege and supremacy exists in the form of obstructed economic, political, and social power for Black people in America.” Four years later, we amplify this message more than ever.
Dr. Anthony Fauci said Tuesday the visibility LGBTQ people brought to themselves during the height of the HIV/AIDS epidemic helped change the tide for public perception.
Fauci made the remarks during the daily White House Coronavirus Task Force briefing when responding to COVID-19’s disproportionate impact on black Americans, saying the disease has “shed a light” on health disparities in the United States much like HIV/AIDS did with LGBTQ people.
“During that time, there was extraordinary stigma, particularly against the gay community,” Fauci said. “And it was only when the world realized how the gay community responded to this outbreak with incredible courage and dignity and strength and activism — I think that really changed some of the stigma against the gay community, very much so.”
Biomedical advances against HIV since the dawn of the epidemic have been nothing short of astonishing. An almost always fatal disease is now, for those with the privilege of access to treatment, a manageable chronic illness, treated with a single daily pill. A person who acquires HIV today has every reason to expect to live a normal life span.
Yet with such astonishing success in treatment, why is HIV stigma worse today than ever before? Why do so many long-term survivors, including many who were exceptionally open about their HIV-positive status for years, find they must now keep it a secret, sometimes going deeply into closets they thought they had left for good years ago?
Many people—especially those who do not have HIV—find these questions startling. That’s because they remember the days when one had to wear a spacesuit to visit a person with AIDS in a hospital or was afraid to eat in a restaurant with gay waiters or refused to touch a person they thought might have the virus.
When most respondents in a population don’t know about a particular medication, that means that the word is not getting out. Although efforts may have gotten better since 2013, the reality is that most women still are not considered in the marketing of PrEP especially among people that have some high-risk activities within their lifestyle.
The parallels of this lack of knowledge continue a legacy of female bias when it comes to sexual health topics. The female condom is one example of a tool that was meant to empower women to protect themselves. However, the commitment by the health community to engrain it in our cultural sexual education failed and it is always seen as an option that men and women don’t fully embrace.
Ending the HIV Epidemic: A Plan for America aims to close this implementation gap. NIH-funded advances in effective HIV prevention, diagnosis, treatment and care are the foundation of this effort. In addition, expanded partnerships across HHS agencies, local community organizations, health departments, and other organizations will drive new research to determine optimal implementation of these advances. This type of research is called “implementation science,” and is essential to translate proven tools and techniques into strategies that can be adopted at the community level, particularly for communities most vulnerable to HIV.
Understanding what works to prevent and treat HIV at the community level is critical to the success of the Ending the HIV Epidemic plan. More than 50% of new HIV diagnoses in 2016 and 2017 occurred in just 50 geographic areas: 48 counties; Washington, D.C.; and San Juan, Puerto Rico. Seven states also have a disproportionate occurrence of HIV in rural areas. For its first five years, the new initiative will infuse new resources, expertise, and technology into communities in those key geographic areas.
However, communities are more than just geography. On World AIDS Day, we are reminded that Ending the HIV Epidemic must take place “Community by Community.” The people affected by HIV are a part of unique communities often shaped by differences in race, ethnicity, gender, culture, and socioeconomics. To reach people who have different needs, preferences, and choices, and ensure that HIV treatment and prevention tools can work in their lives, we must go beyond a “one-size-fits-all” approach.
Imagine a couple. Let’s call them Todd and Carl. They love one another like crazy and continue to be amazed at how much they have in common.
They work out together at the same gym, enjoy watching the same nerdy, sci-fi and fantasy series on Netflix, and share a love for Japanese and Korean food. They seemed to effortlessly merge their groups of friends when they got together and share the same values when it comes to working hard and building their careers.
Although neither has popped the question yet, they’re likely heading toward marriage somewhere down the line. They love, trust and support each other. Oh, and the sex? The sex is mind-blowing. It helps that Todd’s around 20% top and 80% bottom and Carl’s the opposite. They just click. They make that ridiculously cute couple that others envy.
Sounds good, right?
Except it never happened. Despite both catching each other’s attention on an app, Todd and Carl never went for that first date. They never made it to the bedroom stage, let alone realize that they both shared a dream of adopting a kid and trekking across South America one day. See, Todd stated on his profile that he’s HIV positive. And when he messaged Carl, he wasn’t rude, but he simply responded, “Sorry, not quite what I’m looking for.”
And with that, a relationship that would have changed both their lives disappeared into the ether. Mr Right was pushed right back out of the door.
Stigma did not create AIDS. Yet it prepared the way and speeded its ravaging course through America and the world. First stigma delayed understanding of the disease: it’s a gay cancer, it’s a punishment from God, they brought it on themselves, so who cares? Then stigma delayed government action, research, and assistance for the sick and dying. Stigma made people afraid to get tested for HIV and treated. Stigma made people ashamed, isolating and alienating them from friends and family. Stigma cost people jobs, professional standing, housing, a seat on an airplane or in a dentist’s chair. Stigma made many afraid to live, and want to die. But then it began to make some brave people very angry and AIDS activism was born. The activists quickly realized that to end AIDS we must end stigma.
AIDS activism did more to fight the stigma on being gay or having AIDS than any other social force. In this way, AIDS activism, like the civil rights movement, became a great moral movement of our time, defending the innocent, restoring dignity to the violated, giving hope to the desperate, and reviving faith in the disillusioned. AIDS activism gave LGBT people courage, dignity, and power they had never held before. It inspired many to stand up and proudly proclaim who they are and who they love. Twenty-six of the world’s most advanced countries now recognize gay marriage and today a gay man openly married to another man is a prominent candidate for President of the United States.
In his State of the Union Address earlier this year, President Trump announced the laudable goal of eliminating HIV transmission by the year 2030. Needle exchange programs (also called Syringe Exchange Programs or SEPs) are a public health approach in use since the 1980s with a proven record of reducing the spread of HIV, hepatitis, and other blood-borne infectious diseases. I have presented much of the data supporting needle exchange programs here and, more recently, here. Now, new research reported in the Journal of Acquired Immune Deficiency Syndromeadds even more strength to the argument in favor of needle exchange programs.
Using surveillance data of HIV diagnoses associated with intravenous drug use from Philadelphia and Baltimore, cities where needle exchange programs had been permitted since the early 1990s, their analysis concluded that more than 10,000 cases of HIV were averted in Philadelphia from the years 1993 to 2002, and nearly 1,900 cases were averted in Baltimore from 1995 to 2004.
Because most of the averted cases would have received publicly funded health care, the study’s authors then translated averted cases into cost savings for the two cities.
The forecasts estimated an average of 1,059 HIV diagnoses in Philadelphia and 189 HIV diagnoses in Baltimore averted annually. Multiplying the lifetime costs of HIV treatment per person ($229,800) by the average number of diagnoses averted annually in both cities yields an estimated annual saving of $243.4 million for Philadelphia and $62.4 million for Baltimore. Considering diagnoses averted over the 10-year modeled period, the lifetime cost savings associated with averted HIV diagnoses stemming from policy change to support SEPs may be more than $2.4 billion and $624 million dollars for Philadelphia and Baltimore, respectively. Because SEPs are relatively inexpensive to operate, overall cost savings are substantial even when deducting program operational costs from the total amount.
Needle exchange programs have long been endorsed and encouraged by the Centers for Disease Control and Prevention, the Surgeon General of the United States, the World Health Organization, the American Public Health Association, and the American Medical Association. Nevertheless, needle exchange programs are legally permitted to operate in only 28 states and the District of Columbia. Drug paraphernalia laws make them illegal elsewhere.
Some critics argue that needle exchange programs “enable” or “endorse” intravenous drug use. Such moralizing is not appropriate in this context. Addiction is a behavioral disorder characterized by “compulsive use despite negative consequences.” Preventing organizations from providing an effective means of harm reduction to people with addiction who continue to use drugs is akin to denying insulin to diabetics who continue to make dangerous eating choices.
It is not unrealistic to set a 10-year goal for ending HIV transmission. Needle exchange programs are essential for that to happen.
It’s clear that there are discrepancies in the support young men of color have when it comes to accessing key sexual health services. So, what can we do to change this?
One way we can help young people prevent HIV is through providing PrEP on college campuses. Providing PrEP on college campuses gives young people the tools they need, while also eliminating the stigma around HIV. Navigating college as Latinx students can already be difficult enough, especially for first generation students like myself. In my experience, feeling supported by your school is key in creating an environment where all students can thrive, and having your health needs met is a part of that.
Providing PrEP on college campuses also eliminates another barrier many students face in accessing PrEP: transportation. Given that not all schools are located in metropolitan areas, some young people may have to travel unrealistic distances to the nearest clinic to find PrEP. Students attending college outside of their hometowns might not even have access to a car, eliminating the option of transportation altogether.
PrEP is also not only for gay and bisexual men. Anyone who might be at risk for contracting HIV is a potential candidate for PrEP, including trans people, women, and non-binary folks. So, while accessing PrEP is vital for queer men of color, there are also other people who can benefit from it.
In his recently released memoir, “Over the Top: A Journey to Self-Love,” Jonathan Van Ness revealed that he is HIV positive. While also being nonbinary, Van Ness is a trailblazer in the queer community. Van Ness is starting very important conversations about topics that need to be destigmatized in American society. HIV has been a problem facing the United States since the 1980’s, but many people are still uncomfortable discussing the disease.
While HIV is a very serious disease, various stigmas still surround those living with it today. Those living with HIV today still face harsh judgement from certain people due to preconceived notions about the disease. People do not understand the current advancements in prevention and treatment, and they still believe myths that were spread about the disease in the 1980’s. Living with HIV today is very manageable, and I feel that educating people about the disease is the first step in removing HIV stigma.
I feel a connection to this topic on two levels: first off, being a gay man, HIV will always be a concern in the back of my mind. When the HIV epidemic broke out in the United States in the 1980’s, it largely affected the LGBTQ community. While prevention and treatment methods have improved astronomically, HIV still heavily impacts the LGBTQ community. Although anyone can contract the disease, the LGBTQ community makes up a majority of new cases diagnosed in the United States. Why is this?