“It was a sunny afternoon in 1981,” writes Nicholas Benton, the storied 73-year-old publisher of the Falls Church News Press. “I was in my office in Houston at the time. A young woman came in waving a newspaper exclaiming that a ‘gay cancer’ had been identified, according to a report in the New York Times.”
And so it began. The onset of an epidemic that would strive to crush the spirit of the gay community as it ravaged and decimated its populace, before giving way to mobilization, rebellion, and a strength that would super-power a social revolution — one that, in the decades to come, would see tremendous, social-changing impact for LGBTQ people, in terms of same-sex marriage, military service, and discrimination in the workplace. Much of that blazing fire for social justice was set by our community’s fast, forceful, determined reaction to the HIV/AIDS crisis in the 1980s.
But HIV/AIDS was never just about gays. It is — always has been — about everyone. If you are human, it impacts your life in some capacity or another. It may no longer be the death sentence it was when it first emerged, but HIV/AIDS is not going away anytime soon. It still carries an enormous stigma. Certain communities — and parts of the world — are underserved by education and access to its lifesaving drugs. The virus isn’t as omnipresent as it was in the 1980s and 1990s, but it still requires our attention, our vigilance, our voices.
For this year’s World AIDS Day issue, we opened the conversational floodgates to present a community forum. A broad range of people — positive and negative, young and not-so-young, CEOs of AIDS organization and everyday people — responded to our questions and their edited responses are presented on the pages that follow. (A longer version of this dialogue can be found on our website, metroweekly.com.)
It’s true that things have changed for the better, and will hopefully get better still. The advent of preventative measures like PrEP, the eye-opening revelations about what “undetectable” status means for people who are positive and their negative partners, the organizations working on the front lines to ensure the public is educated and informed, and the legions of scientists dedicated to eradicating the virus all point toward a future where we finally end the AIDS epidemic. — Randy Shulman, Editor-in-Chief @randyshulman
When did you first become aware of HIV/AIDS?
CHRISTOPHER HUCKS-ORTIZ, Chair of the HPTN Black Caucus, 52: I first learned about HIV/AIDS as an adolescent at the beginning of the epidemic. Back then, we didn’t know a lot about HIV or how to prevent or treat it. I recall hearing the stories almost daily about people losing their homes, jobs, families, and even their lives, without having a community of people to support them. It was during and because of this that I have made it my life’s work to try to address ending the epidemic. We’ve come a long way, but we still have a way to go to end AIDS.
GREGORY T. ANGELO, President of Log Cabin Republicans: Growing up in the 1980s as the AIDS crisis was emerging, my first awareness of the AIDS epidemic — and how far it reached — was via the made-for-TV movie Go Toward the Light. It wasn’t until I moved to New York City years later that I met gay men from an older generation — survivors, who lost dozens of friends in that decade of death and who lived to impart their lessons to people like me.
ROBERT YORK, Director of Development, National Minority AIDS Council, 49: I first learned of AIDS in the late 1980s when films Longtime Companion and An Early Frost were brought to the mainstream and made available in Oklahoma. Then you started seeing numerous obituaries in the LGBTQ press with very little coverage in the mainstream press about members of their community passing away.
RON SIMMONS, Former Executive Director of Us Helping Us, 67: My gay friends in New York City started dying from pneumonia. I was living in D.C. and read in the gay press about this deadly illness affecting gay men. At the time, I thought of something Dick Gregory had said in a speech the summer of 1980. He advised all of his gay friends “to go deep, deep back into the closet because they have something in store for you that you will not believe.”
NICK BENTON, Owner/Editor, Falls Church News Press, 73: It was a sunny afternoon in 1981. I was in my office in Houston at the time. A young woman came in waving a newspaper exclaiming that a “gay cancer” had been identified, according to a report in the New York Times. I was mortified. It was like an electric shock went through my entire body. It was not because it was a surprise. I knew instantaneously what this meant because I had seen it coming. Almost immediately the worst consequences of this crossed my mind, and my perception turned out to be not that far off. Who knew that right then, the next 15 years of our community’s life was foreordained and there would be no relief from the horrible death sentence the emergence of any symptoms meant.
ACE ROBINSON, Commissioner, L.A. County HIV Commission, 39: When I was 6 or 7 years old, I had an older gay cousin who was out of the closet. At a family gathering, one of my relatives would not shake his hand. When I asked why, I was told: “You don’t know if you can catch AIDS from touching someone like him.” I did not know what AIDS was, but I assumed this relative was wrong and was just being mean. The gay cousin quickly became one of my favorite family members.
JIM SLATTERY, President, Brother, Help Thyself, 48: I knew of HIV/AIDS as a closeted high school teenager in the ’80s. While not sexually active, accurate information on the epidemic and how it was spread was not something easily accessible in those days, and the hysteria surrounding the many deaths terrified me. In addition, I recall pretty vividly seeking out everything I could in writing about the death of Rock Hudson, worrying if I had any chance of a healthy adulthood. Knowing my attraction to men, reading what limited information was available, and knowing how homophobia (and the possibility of being shunned by family) was almost as frightening as HIV/AIDS.
TIFFANY MARRERO, 26: I was born positive, so for me the significance of HIV was not important until puberty and I started wanting sex.
PETER CRUZ, Associate Director of the HIV and Health Equity Program, Human Rights Campaign: I took my first HIV test in 1998 — before rapid HIV tests, PrEP or viral suppression. I was frozen with fear and anxiety during the one-week window I had to wait to receive my result. I worried that I would bring shame to my family if the test came back positive, and wondered how I could continue living if I had to live with such grief. I now know that shame I felt was unnecessary, and built on the stigmas I had grown up with surrounding HIV and AIDS. Still, that experience lit a fire within me to be of service to individuals affected by HIV and AIDS.
CRAIG SHNIDERMAN, Executive Director, Food & Friends: I first became aware of AIDS in 1987. At that time, I was the Executive Director of an organization that provided home health services and hospice care. Several of our patients were young men with late stage AIDS. Experiencing their terrible illnesses and deaths was a profound experience for me.
ALEXA RODRIGUEZ, DMV Chapter Director, TransLatin@ Coalition, 41: When I took the HIV test in 1998 and it came back positive.
TERRANCE LANEY, 33: I remember the hysteria of the late 1980s and early 1990s, like the community in West Virginia that shut down its public pool because an HIV positive man swam in it. But HIV/AIDS didn’t become real to me until two of my close relatives, both black gay men, died in the early 2000s. I am from the Atlanta area, and when people who I know test positive, many of them have already advanced to end stage HIV or AIDS and die shortly thereafter. Black gay men in the South are still in a deadly battle.
BRIAN SOLEM, Senior Director of Communications, AIDS Foundation of Chicago, 33: My earliest memories about HIV/AIDS are from watching Pedro [Zamora] on The Real World and learning that not only was he gay, but he was HIV-positive, too. As an adolescent in the ’90s, my fear of being gay and my fear of getting HIV were intertwined: If one, then the other. By the time I came out to my parents, my fear of both had lessened, and I owned my vulnerability to HIV in the same way I owned my gay identity.
RICH TAFEL, 55: In the early ’80s I kept reading about this mysterious disease. Then, in 1984 I volunteered to be an AIDS Buddy in Boston. In this program we visited a person with AIDS each week. This was a huge education for me. My buddy had faced many types of discrimination. He was given three months to live, but lived a full year longer than expected. The average time we had buddies was only two months before they died.
REV. DYAN AKOUSA McCRAY-PETERS, Founding Pastor of Unity Fellowship Church, 67: In the fall of 1982 I witnessed many of my male friends suffering from what appeared to be the flu. Congested, coughing, no appetite and extreme weight loss. I heard that the Center for Disease Control was working overtime to identify the cause of the symptoms which later was identified and called “GRID” — Gay Related Immune Deficiency. Within 18 months I had lost over eight men who were like brothers to me. Their families, friends, partners and I were all devastated.
CEDRIC GUM, Peer Navigator, The POWER Project of Chase Brexton Health Care, 28: I’ve always heard of “the bug” growing up, but figured that was beyond me. Once being diagnosed with HIV in 2012, I started to learn about the intricacies of HIV/AIDS. The direct, firsthand stigma was painful yet eye-opening, which prompted action on my behalf. By educating myself, I could educate others with the same perceptions I had. I realized that it should not take being personally impacted to learn or care about an issue.
ADAM TENNER, 50: I was in high school when HIV/AIDS came on the scene. I was not out then but subconsciously it delayed my coming out by many years. In college, one of our professors died of AIDS and it helped to mobilize students to ensure that we had access to condoms and information on campus.
JOHN HASSELL, National Director of Advocacy, AIDS Healthcare Foundation, 59: I learned about AIDS in 1981 when I was on a beach vacation at Sandbridge, Va. reading about a new “cancer” that reportedly was affecting gay men.
EARL FOWLKES, Center for Black Equity, Inc. President/CEO: I became aware of HIV/AIDS in the early 1980s while living in Atlanta then moving NYC, when some of my friends and co-workers became ill and quickly died. The symptoms were rapid weight loss, blotchy skin, and an ungodly high fever. At first, only my white friends were becoming ill, but shortly thereafter my black and Latino gay male friends started to become ill. It was though some strange gay cancer had swept the land.
LAWANDA WILKERSON, 38: I have always been aware of HIV/AIDS, but really was more aware and educated on it when I was diagnosed with it in April of 2015.
RAYCEEN PENDARVIS, Host, The Ask Rayceen Show: The first time is when I heard about the “Gay Disease” or “Gay Plague.” It hit home when I lost my best friend, Darryl Lewis, in 1986.
MURRAY PENNER, Executive Director, NASTAD, 56: In the early 1980s my friends began dying. It was a frightening time. There were no treatments and the only advice doctors could give to people who were testing HIV-positive was to prepare to die.
CORNELIUS BAKER, 56: At the beginning of summer break from college in 1981, my boyfriend and I were talking to the owner of the Le Paris Bookstore in Syracuse, which sold a certain type of merchandise. He told us to be careful because there was a new cancer killing gay men. We were 19 and didn’t quite understand but it was an important moment. He was one of the early heroes who spread the word to the community.
SCOTT SCHOETTES, HIV Project Director, Lambda Legal, 50: Hard to remember exactly. I am sure I heard reports on the news when it was still being described as a “gay cancer.” It was definitely part of my awareness long before I was sexually active. Born in 1967, I was probably part of the first group for whom HIV/AIDS was a fixture in the world before we were even sexually active. In other words, I never had a sex life without concerns about HIV.
Do Americans still care about HIV/AIDS as an issue?
HUCKS-ORTIZ: Americans still care about HIV/AIDS, but too many of our citizenry may think that HIV is no longer something that needs so much intervention. I beg to differ. The face of the current HIV epidemic has become more likely to be African American or Latino, younger, a man who has sex with other men, and/or be someone who lives in places with disparate access to medical care. These are all things that we as Americans are still concerned with, but it is up to us as advocates to ensure that these conversations are tied back to addressing HIV/AIDS.
ANGELO: Several years ago an episode of South Park jibed that AIDS, as a cause célèbre, had been eclipsed in popular culture by the movement to eradicate cancer. There is some truth to that, largely rooted in a public awareness that HIV has largely become a chronic — rather than a lethal — disease. But it does persist, which is why a lack of urgency around the issue threatens to freeze the progress we have made on eradicating AIDS in our lifetimes.
SIMMONS: They don’t care, and it’s understandable, because now HIV can be treated with a pill a day. Unless HIV personally affects them or someone they know, they are too busy struggling to survive in today’s economy. Rent, mortgages, food, clothing, employment — that’s what the Americans I know are dealing with. HIV/AIDS is on the counter because there’s too much on the stove.
BENTON: Not nearly as much as they should. As part of what could be called a “post-traumatic stress syndrome” reaction to the epidemic, there has developed an almost nostalgic kind of unreality about the terrible consequences of the epidemic, and there has been no serious appetite in our popular gay culture to address it. Safe sex has been replaced with the false panacea of PrEP, the dangerous illusion that as long as the HIV virus is stemmed, there need be no concern for the explosion in the spread of other dangerous STDs, without realizing that it was just the environment of easy STD transmissions that the HIV virus was able to mutate into its deadly form, and it, or something like it, could again.
ROBINSON: In some places. We have to do a better job at supporting people impacted by HIV. We are finally seeing less infections nationwide, even though it is still increasing for some populations — gay Black men and transgender people of color. However, you can hide your infection now with the excellent treatment that is available. Since HIV stigma that was born in the ’80s is still rampant, many people are still encouraged to hide their infection. HIV stigma is the main reason why so many people still die from the disease. No one wants to be one of those people.
SLATTERY: The question seems a bit harsh, but I’ll answer it by saying I don’t believe the majority of Americans still think that HIV/AIDS is an issue worthy of their concern. This is because they no longer see it as the epidemic it was in the 1980s and 1990s. While great advances in medicine and treatment have been made, it is my observation that prevention efforts continue, but are declining, as folks believe PrEP to be a silver bullet of sorts. This viewpoint is held by those who weren’t coming up in the early days of the disease and thus do not have the advantage of the history and utter devastation HIV/AIDS — and the inhumane inaction our national political leaders, especially Ronald Reagan — wreaked on our community.
DEBORAH DIMON, Alexandria Health Department, 62: I think there are people who still care, know others living with HIV, have a memory of what it was in the early days of the epidemic. I think there are some enlightened young people but for the most part, I drive home most days and look at all the houses and apartments in Alexandria and say to myself, “I really wonder how many people out there actually have thought about HIV today?” I do know people have more information and take action to prevent themselves from becoming infected, while there are others who just don’t have it on their radar for many reasons.
DON BLANCHON, CEO, Whitman-Walker Health, 53: Yes, but with much less urgency than we did in the early years of the AIDS epidemic. The 1980s and 1990s were marked by much suffering, many deaths, and rampant stigma, discrimination and bias. People’s lives were at stake every day. There was an overwhelming emotional intensity to do anything, something to comfort your partner, your family member, your friend, or your colleague in the face of death.
Now we have significantly advanced testing, treatment, policy, and funding. Such progress was unimaginable 30 years ago. The progress, however, has also affected community perspectives about the urgency — or lack thereof — around the fight against HIV. Simply put, HIV is not viewed as the #1 Public Health Issue in our society. That distinction now belongs to opioid addiction.
SHNIDERMAN: Yes, many Americans still care about this issue, but there is a marked decrease in the sense of urgency and concern about the epidemic. There is a greater recognition of this public health menace among medical professionals than with the general public. As the number of deaths has declined, so too has the public’s awareness.
PAUL KAWATA, NMAC: I think Americans do still care about HIV/AIDS but it’s no longer one of their top concerns. For them, the “crisis” around HIV appears to be over. But, when you give them the full story of what’s happening, particularly in communities of color, their concern rises. We still deal with issues of stigma and discrimination that continue to fuel the epidemic among men who have sex with men, communities of color, and the transgender community. We need to ensure that we are doing all we can to bring the latest advances in health care and prevention to these communities.
LANEY: I believe that Americans still care, but many people aren’t concerned about HIV as a real threat to themselves. Far too many people still view the disease as something that happens to gay men, drug users, and promiscuous/undesirable people. The truth is that, in 2017, despite all the advances that we have made socially towards sexual liberation, most folks don’t have the education or self-esteem/efficacy to manage their sexual health. Under those circumstances, HIV continues to be a topic that is easily brushed off due to ignorance and shame about our sexuality.
SOLEM: I’m regularly asked variations on this question in casual conversations. “Is HIV still a ‘thing’?” “But people don’t die from AIDS anymore, do they?” This tells me that we have replaced stigma with silence. The antiretroviral revolution, which has saved countless people’s lives and helped them reach their full potential, allowed us to neatly tuck the HIV epidemic away, give ourselves a pat on the back, and consider the mission accomplished through pharmaceutical intervention. You only care about HIV if you have to — if you’re forced to think about a friend, brother, aunt who’s either living with the virus or is vulnerable to it.
McCRAY-PETERS: I think there is a genuine posture of care in America, however there is so much more that should be done to curtail the spread of the virus. At a young age education should begin at home, where parents should openly talk to their children about HIV/AIDS. Likewise there should be a curriculum implemented in school on age appropriate levels.
HASSELL: Most Americans think AIDS is over. Too many organizations have made false claims of victory, pumping out happy talk that it’s not life-threatening. Over one million people die each year from HIV-related diseases because they can’t get access to obscenely priced medications. Over 20 million people living with HIV have no access to treatment. With over 1.8 million newly infected each year, the epidemic is out of control.
DAVID HARVEY, National Coalition of STD Directors, 55: Yes and no. For younger Americans who haven’t seen the direct impact of HIV/AIDS or experienced loved ones dying, HIV/AIDS does not have the same impact — perhaps leading to lower sense of the need for activism. Conversely, some Americans are celebrating the advances in HIV treatment, PrEP and PEP and know that course must be maintained in order to end HIV.
BA’NAKA DEVEREAUX (32): It seems to me that there is a frivolous attitude toward HIV/AIDS, and it’s that attitude that seems foolish and dangerous to me.
FOWLKES: I think Americans are indifferent to HIV/AIDS these days. The news that appears about HIV/AIDS seem to be about new prevention medicines, or how people who are infected are living normal lives. HIV/AIDS has fallen into the category of a chronic controllable disease such as diabetes or hypertension in the minds of most people. You hardly hear about the deaths anymore, although people are still dying from AIDS-related illness. You don’t hear about how the pandemic has not slowed down in certain parts of the South or among Black Gay men and Transgender women. You hardly hear actors and entertainers talking about HIV/AIDS when they are accepting their awards or wearing red ribbons. “No news” translates into “good news” in the minds of the public.
JENNIE SMITH-CAMEJO, Communications Director, Positive Women’s Network, 38: I think most Americans have a very outdated understanding of what HIV is, how you get it (and don’t get it), and who it affects. Even though the scientific and medical community understand HIV very well now, and have found groundbreaking antiretroviral treatments that keep it at bay and prevent transmission (we know now that undetectable = untransmittable!), most of my friends and acquaintances outside the HIV community don’t seem to realize that you can have a normal life span with HIV, that you can have condomless sex without risk of transmission if you’re on successful long-term treatment, that you can live a normal life. There seems to be this idea that it’s still, if not a death sentence, at least a lifelong curse that’s almost as easy to get as a cold or the flu. Stigma is still alive and well. I think people still also commonly believe that it’s a “gay man’s disease.” While the rates are still highest in the LGBTQ community, anyone can acquire HIV, and areas facing poverty, inadequate access to healthcare, mass incarceration and other huge challenges are most at risk.
BAKER: Traveling around the country, I am always amazed how much Americans do care about HIV. It is not something that most think of on a day-to-day basis, but they have a deep commitment to seeing it come to end and serving those in need. Just this Thanksgiving weekend, my Uber driver taking me to visit my grandmother in Winter Garden asked what did I do in Washington. When I responded about my work addressing HIV domestically and globally, it led to a very rich conversation about what more needs to be done. He also shared his experience growing up in a deeply religious community that prevented him from having friendships with gay people that would have made his life better. These conversations in places all across our country also reflect the continued generosity of the American people in helping people living with HIV in the U.S. and around the world.
SCHOETTES: In a generic sense, I think Americans still “care” about HIV, but they view it as something that doesn’t really affect them much — and believe that it only affects people in other communities and other countries. Americans don’t realize the impact that HIV and AIDS continue to have in this country in various marginalized populations — including Black and Latino communities, the LGBT community, people living in poverty, those living in the rural South, sex workers, and injection drug users. There are some people that would not care even if they knew about the devastating impacts on people in these communities, but for the most part, I think Americans would care — if they were aware.
What does HIV/AIDS mean to you in 2017?
HUCKS-ORTIZ: In 2017, addressing HIV/AIDS to me means looking at our lives in a holistic way, and considering both community-level and structural approaches to addressing health and wellness which includes safe and stable housing, preventative healthcare, quality schools, job development, and addressing the prison industrial complex, and addressing stigma. All of these are part of a comprehensive approach to ending HIV as we know it.
LOREN JONES, Board Member, Positive Women’s Network, 65: It means that we are on our way to either preventing transmissions completely, sustaining the life and lifestyles of those aware of their HIV status, or curing the newly infected.
BENTON: It means that the popular urban LGBTQ community culture still lacks the maturity to take this and other looming dangers facing it seriously, and the emphasis on new forms of encountering people for casual impersonal sex are only inviting a very unhappy future. LGBTQ people need to step away from the hedonistic excesses that the urban gay culture provided in the 1970s and are persisting even now. There is so much more to life in terms of romance, love, and caring. Too many have suffered emotional damage from so much impersonal sex that they aren’t even aware of what they’re missing, or why they don’t seem to be able to cultivate meaningful interpersonal relations.
SLATTERY: In 2017, AIDS to me means continued compassion to not just those who have lived with the disease for decades, but to those who have been newly diagnosed. I have also been alarmed by recent reports of folks living with HIV dying from full blown AIDS-related illnesses in greater numbers than we’ve seen in a very long time. Making sure folks remain on their regimen is key to ensuring we don’t see these numbers continue to rise.
BLANCHON: The fight against HIV in 2017 is all about our community’s willingness to address stigma, discrimination, and bias within our society. Why? Because these societal ills are the root causes of barriers to HIV prevention services, testing, and treatment. Too many persons in our community — especially those for whom society is less affirming because of one’s race, identity, orientation, immigration status, and/or economic standing — do not seek or stay engaged in care.
On a macro level, we may very well have the science and treatment modalities to find a functional cure for HIV in our lifetimes. Personally, I do not believe we can achieve such a cure without greater awareness, understanding and empathy towards all in our community. That is why attacking stigma, discrimination, and bias among us is so important in the fight against HIV.
CRUZ: HIV/AIDS in 2017 disproportionately affects communities that are most marginalized and with the least resources. According to the Centers for Disease Control and Prevention (CDC), Black and Latinx men who have sex with men, and transgender women have the highest HIV incidence rates in the United States. HIV providers, policy makers and community members must work collectively to address the problems that are preventing individuals from accessing and adhering to HIV programs and services. HIV services must continue to take a holistic and client-centered approach to break the historical trauma and distrust within these communities. Every person living with or affected by HIV must have access to the support, resources and services they need to achieve optimal health and wellness.
SHNIDERMAN: HIV/AIDS remains a primary focus for my work and the work of Food & Friends. We continue to provide home-delivered medically-tailored nutrition to over 600 persons living with HIV/AIDS along with roughly 200 of their family members, approximately the same number as ten years ago. While cancer referrals represent the fastest growing portion of our services, we have an abiding commitment to caring for persons impacted by HIV/AIDS.
LINDA NABHA, HIV Primary Care Physician with Price Medical, 37: In the early years of the AIDS epidemic, those who were diagnosed with HIV had possibly a few months to live. We are now living in a time period where more people living with HIV than ever before have access to life-saving medications, and live long, healthy lives. We are seeing a decline in the number of infections overall, but there is a ton of work to still do: the rates of HIV continue to rise amongst gay and bisexual men. We must continue to focus on access to medications, health care and preventative medications, such as pre-exposure prophylaxis (PrEP). To me, HIV in 2017 is a manageable, chronic illness which has excellent and effective therapy (similar to diabetes or hypertension).
KAWATA: AIDS in 2017 is largely a success story, with some caveats. We now have at our disposal tools that could set us on a path to finally end the HIV pandemic. And, where those tools have been implemented, we are seeing dramatic reductions in new diagnoses. However, many communities, particularly those of color, are not seeing widespread use of methods like PrEP. AIDS in 2017 means working to make sure that everyone affected by HIV can benefit from these advances.
We also need to help long-term HIV survivors, particularly those over the age of 50. Many of them are reporting dealing with depression, isolation, and PTSD. We need to make sure that these men and women who survived the greatest public health crisis of the latter 20th Century have the resources they need to live long, healthy, engaged, and happy lives.
SOLEM: In some ways, 2017 has seen a reawakening of HIV awareness in the U.S. PrEP’s influence is creeping more and more into the mainstream; cities and states across the U.S. are undertaking bold “Getting to Zero” plans; threats to the Affordable Care Act raise awareness of those whose chronic illnesses like HIV rely on stable access to health care. AIDS in 2017 reminds us that everything we’ve worked to accomplish with ending the epidemic could go up in flames if we lose momentum under President Trump.
McCRAY-PETERS: In Third World countries the spread of HIV/AIDS is not addressed in a way that changes the spread of the virus. I recently was in West Africa and noticed no public advertisement of treatment on billboards.
STEFFEN: It is honestly a distant thought due to the fact that I am and have been Undetectable for six years. It makes me happy to be able to live my life and not worry about HIV.
TENNER: The last HIV funeral I went to was just about 10 years ago. Monica was a 21-year-old woman who worked at Metro TeenAIDS. Although she was a great peer educator and testified numerous times before the city council and school board with her famous line, “I had 10 minutes of HIV education in 10th grade and it wasn’t enough,” Monica was not out about her HIV then. In fact she did not disclose her status until she got sick. She refused to go on medication because at 21, she said, she was “too tired to fight.” Monica lived a heroic life, surmounting challenges that would crush many adults. While HIV is no longer the cruel reaper that it once was, the lessons are critical as we look to eradicate HIV and stay vigilant for other diseases that thrive where there is poverty, lack of education, stigma and discrimination.
HARVEY: The advances in HIV/AIDS treatment and biomedical prevention are nothing short of a miracle and are to be celebrated. We must maintain our investment in research, care and prevention programs to end HIV. But the rise of other STDs in gay men should give all of us pause — the clinical intersections between STDs and HIV are being under-estimated. And STDs are NOT the “cost of doing business” to end HIV since STDs cross between communities, with potentially deadly consequences from undiagnosed syphilis and complications from STDs in women, which can cause cervical cancer, Pelvic Inflammatory Disease and infertility.
DOUGLAS YEUELL, Executive Director, Atlas Performing Arts Center, 57: In 2017, HIV/AIDS brings an aching and sad memory back to my life. Thank God the scourge has lessened, but the loss of human life especially those near and dear to me leaves a tearful wound that will never heal.
SMITH-CAMEJO: In 2017, HIV is an example of a condition that should be preventable, since we have the tools we need to prevent it, and yet we see that, while overall rates of new cases of HIV continue to decline, in certain communities, there is no decline but an increase. Poverty, structural racism, inadequate access to health care, underfunded education, marginalization, mass incarceration — these are all root causes that dramatically increase the likelihood that one will acquire HIV in one’s lifetime. HIV is just one more manifestation of the gap between the haves and have-nots in our country, as well as a testament to who our government (and, by extension, society) values. Some cities like New York and San Francisco, with large and politically powerful gay communities, have all but ended new acquisitions of HIV by expanding access to testing and care, creating aggressive marketing campaigns to impacted communities and making prevention tools like PrEP and treatment available where they are most needed. But in the deep South, where inequities are deeply entrenched and the epidemic is concentrated in the Black community and exacerbated by mass incarceration, where Republican elected officials often feed into racism and homophobia and have resisted expanding Medicaid or other efforts to make healthcare more accessible to lower-income folks, we see the epidemic gaining steam. This is intolerable in 2017. It really shows priorities.
BAKER: HIV in 2017 is a complex mix of emotions and thoughts for me. Most importantly, I think of the past 36 years and so many dead friends. They are with me every single day. Their lives give me inspiration to look ahead to bringing an end to the continued needless infections and deaths.
SCHOETTES: For me, personally, it means a health condition that I will probably live with the rest of my life. It means taking my medication every day and doing other things to remain as healthy as possible. It also means a lot of moments of disclosure and explaining and a more limited pool of potential partners, including potential sexual partners. But that is changing as well, with the availability of PrEP and as more people realize that a person living with HIV who has an undetectable viral load has no chance of transmitting HIV to a partner. In fact, it is probably safer to have sex with a person with an undetectable viral load than it is to have sex with someone who thinks they are HIV negative but has been sexually active since their last HIV test.
Are you worried about the future of U.S. HIV/AIDS funding under Trump?
HUCKS-ORTIZ: It concerns me that under this administration the Office of National HIV/AIDS Policy (ONAP) has literally disappeared, and what that may mean for our coordinated efforts to address HIV. The National HIV/AIDS Strategy talked about making the United States a place where “new HIV infections are rare and when they do occur, every person regardless of age, gender, race/ethnicity, sexual orientation, gender identity or socio-economic circumstance, will have unfettered access to high quality, life-extending care, free from stigma and discrimination.” I have yet to see the current Administration move in any way to support this strategic vision.
ANGELO: President Trump has stated he is “determined to build upon these improvements and continue supporting domestic and global health programs that prioritize testing and treatment for HIV/AIDS,” which would mark a continuation of the policies first elevated under President George W. Bush to end HIV and AIDS as we know it around the world. President Trump’s reauthorization of the President’s Council on HIV & AIDS (PACHA) is further demonstration of this commitment.
SIMMONS: AIDS activists will have to plan for the long term to deal with Trump’s madness. We must demonstrate and ensure health care becomes a human right. There has to be funding for treatment and prevention, here and abroad. At the same time, since funding may be cut for the next few years, we have to develop behavioral interventions that build resilience in young black gay men, particularly, so they can overcome the pitfalls of social and structural determinants of HIV infection.
ROBINSON: Yes. The loss of the Office of National AIDS Policy should not have occurred. I have not heard the current President speak about the epidemic, which is especially troubling since he is from New York City.
SLATTERY: Last year on World AIDS Day, President Obama released a thorough progress report on national HIV/AIDS strategy implementation. The report highlighted the work of his Administration and set targets for 2020. And while some cite the lack of cuts in President Trump’s FY18 budget submission as meaning he does not intend to defund research, along with declarations that programs such as Ryan White are priorities, the President, as we all know, is prone to lying and tweeting out of both sides of his mouth.
DIMON: I am concerned about people having affordable medical insurance, access to social support that promotes a person’s opportunity for success thereby reducing social factors that impact risk reduction, concerned that people who don’t have insurance may not have access to affordable care and the medications that are imperative to live undetectable.
MARRERO: I worry about criminalization laws and my reproductive rights as a sex and HIV-positive black woman.
CRUZ: The Trump-Pence administration’s efforts to dismantle the Affordable Care Act would significantly reduce access to HIV medical treatment and biomedical interventions in communities that are disproportionately affected. Furthermore, the administration’s failure to name a Director to the Office of National AIDS Policy sends a signal they are not focused on bringing an end to the epidemic.
LGBTQ advocates from around the world have expressed concerns to us about the fact that the Trump-Pence administration has pushed for massive cuts to funding for the Department of State and the U.S. Agency for International Development, which could severely harm our nation’s ability to help LGBTQ communities and people living with HIV and AIDS abroad. The administration’s proposed budget would slash funding for programs that provide vaccinations, treatments and education to nursing moms, children and people fighting diseases, including HIV. New restrictions on the use of federal funding will undermine family planning programs around the world. This will put life-saving medications and treatments out of reach for some of our world’s most vulnerable people, especially those living with HIV.
SHNIDERMAN: I am worried about the future of almost everything in the current circumstances. Most of those living with HIV/AIDS are members of marginalized groups and as such are often the first adversely impacted by funding reductions. Homophobic thinking and behavior increase the likelihood of adverse public policy and decreased funding.
LANEY: I am not only concerned about HIV/AIDS under this administration, but I am concerned about the lack of respect for science and sound public policy based on evidence. It should alarm us all that the wife of the Sec. of Health and Human Services, who is also a state representative in Georgia, thought that suggesting that HIV positive people be quarantined was a reasonable question in 2017.
KAWATA: Very. This year, the administration proposed massive cuts to federal HIV programs, including the Housing Opportunities for People With AIDS (HOPWA) program, research, prevention, and care services. Those cuts would have devastated the HIV community and probably led to a resurgence in new HIV cases. Fortunately, Congress has so far restored the funding for those programs. But that may not always be the case. This is a fight we will have every single year. And there’s always a chance that, one year, it won’t go our way and we’ll lose this vital funding. It’s going to take constant vigilance and constant pressure on our elected officials to keep that from happening.
TAFEL: I’m always worried about AIDS funding. Most AIDS organizations never really developed access to the Republicans and that’s a concern now that the GOP controls all parts of the government. That’s where Log Cabin Republicans will need to take a leadership role and make sure we don’t lose ground.
KARI STEFFEN, 38: I am worried that I will lose my insurance and not be able to go to the doctor, which in my mind means that I will get sick again and DIE!!! I want to live.
TENNER: The future of HIV/AIDS funding has been at risk for many years. Even under President Obama, Michael Kharfen, the current head of the HIV/AIDS unit of the Department of Health, used to say that of the few good things about a stuck Congress was the fact that they had not yet agreed to slash HIV/AIDS funding.
HASSELL: Yes, but the problem is more than who is in the White House. Congress makes final funding decisions, not the president. Sure, what POTUS proposes matters a lot. But do we have the political interest, attention and will to demand that Congress fully fund lifesaving HIV programs? Do we have the will to demand that drug companies stop charging obscene prices for HIV medications? Do we have the will to stop stigmatizing people living with HIV? Those problems worry me more.
FOWLKES: I believe there is legitimate concern that the current administration will make deep cuts in HIV/AIDS that will have a negative impact on the level of services and prevention that will be available to at-risk populations. The current administration has proven to be hostile to communities of color and LGBTQ people, all of whom are impacted by HIV/AIDS at some level.
YEUELL: Yes, as long as Trump is in power I am concerned about the care of humanity. I do not believe Trump understands the concepts of right and wrong.
SMITH-CAMEJO: I’m extremely worried about funding specifically for HIV, but also more generally for health care. We have seen attempt after attempt by the Republican-led Congress and shepherded by Trump to gut the ACA, slash Medicaid, and even cut the very popular Medicare. Dismantling the essential health benefits guaranteed under the ACA mean that people living with HIV could once again be “uninsurable,” or have to pay exorbitant costs for their care. This means more people will die from AIDS, and that we will see rises in the rates of new HIV cases.
PENNER: I think almost everyone working in healthcare is worried about the future, but especially those of us working on HIV. We have the tools to end the HIV epidemic, so now what we need is the political will to do so. We need the resources and resolve from our lawmakers and the Administration to get there.
SCHOETTES: I am not as worried about funding as I am about the ways in which that funding is directed and channeled. I have confidence we will continue to convince Congress that funding for HIV/AIDS programs is essential to sustaining the gains we have made in certain areas in recent years. I worry about how this Administration will direct those funds, given that they are putting people in place who support very discredited “abstinence-only” sex education, have called for cuts to certain programs addressing the needs of minorities, and are hell-bent on eliminating the Affordable Care Act, even though it has been a wonderful thing for people living with and at higher risk for HIV. And I would be even more worried were Pence ever to become President.
Do you think we’ll ever see a vaccine?
HUCKS-ORTIZ: I am hopeful that we will see the development of an effective vaccine against HIV. There is a lot of really amazing work that is being done within the NIH-funded HIV research networks, and I believe that we will see an effective vaccine during my lifetime.
ANGELO: If the trends we have seen in HIV treatment and prevention continue, finding a cure or vaccine for HIV is not a matter of if, but when.
SIMMONS: Yes. Because AIDS research will do it. I remember when my friends were dying around me. Now we take one pill and strive. I have no doubt that a vaccine will be developed. I just don’t know if I will live long enough to see it.
ROBINSON: We have only been aware of HIV for less than forty years. It took centuries to get other vaccines, and we are well on our way.
SLATTERY: My hopeful answer is yes. There have been so many advances in treatment along with great and vital work in reducing the stigma of those living with HIV. My honest and cynical answer is no. In my opinion, big pharma simply won’t allow a vaccine. I truly want to be wrong, but we all saw what is possible when Martin Shkreli and Turing Pharmaceuticals raised the price of Daraprim from $13 per pill to $750, and increased the price of lifesaving EpiPens by 500 percent. It’s really hard for the cynic in me to be dissuaded, but I desperately want to be proven wrong.
MARRERO: Yes! But there are so many positive humans who don’t know they carry HIV, the big concern would be making sure everyone has a chance at the cure.
CRUZ: Advances in HIV research have led to the development of biomedical interventions and affirmed the efficacy of treatment as an effective HIV prevention strategy. Despite the tireless efforts of HIV researchers throughout the world, discovering a HIV vaccine has been elusive. While there is still hope that a vaccine will be developed, we must utilize the research data and resources available today that state that we can eliminate new HIV infections in our lifetime even without the discovery of a vaccine. The key is to increase access to pre-exposure prophylaxis (PrEP) and antiretroviral therapy.
NABHA: A preventative vaccine would not only make a major dent in the incidence rates for HIV but would also greatly reduce the burden of the cost of this illness and the progression to AIDS. Currently, HIV vaccine research is buzzing with activity. We have made great strides but also face big challenges. The virus is smarter than other viruses and it is genetically diverse making it difficult to create a preventative vaccine. However, the majority of HIV research is focused on finding a safe and effective vaccine with major studies underway at the National Institute of Health. I am cautiously optimistic that we will find that preventative vaccine. In our practice, we have seen a rapid uptake of PrEP, which may help people stay HIV negative until a vaccine is available.
LANEY: Yes, I am very hopeful for a vaccine and a cure in my lifetime. In the near future, I hope we also have injectable treatment for HIV positive people so that those who have barriers to taking medication on a daily basis can become undetectable and medically adherent.
SOLEM: It’s very likely that we’ll one day see a vaccine for HIV, but I’m more interested in seeing prevention methods like microbicides and long-lasting injectables get further developed. We’ve made such great progress globally on prevention tools; let’s keep these hot coals afire.
McCRAY-PETERS: If and when monies are redirected from the dollars spent fighting wars outside of the U.S. that will never be won to finding a vaccine, then the likelihood of a vaccine to eradicate HIV/AIDS is a dream deferred.
STEFFEN: As long as our government is in charge of our health, we will never see a vaccine or a cure. They do not care because they are not affected by the disease.
HASSELL: Yes I do, but from what the experts tell us, we still need years of more basic research to reach that goal. It will happen.
FOWLKES: I do believe there will be a vaccine at some point — it’s just a matter of investment. If the United States can send a spacecraft to Mars, surely we can develop a HIV/AIDS vaccine. I believe this can be done with a private/public partnership with the government and pharmaceuticals.
YEUELL: I would certainly hope so — what a relief that would be.
SMITH-CAMEJO: It looks promising — I hear there have been some successful trials in Africa. I think it will still take a while, because it will require a lot of testing and follow-up. Even if and when a vaccine is available, we will likely still face the same problem we face now when it comes to access to care. Will the most vulnerable communities have access to the vaccine? Will they be able to get it free of charge? Will there be outreach in their communities to let them know it’s available and that they are good candidates for it? Will the same religious right community that has virulently attacked the HPV vaccine for kids go after the HIV vaccine as well, with their usual noise about how it will encourage “risky behavior”? I think we have to address a lot of the problems in our society that already stand in the way of ending the epidemic before a vaccine alone will do the trick.
BAKER: Yes, I believe we will have a vaccine. Having worked with NIH and the HIV Vaccine Trials Network, I am excited about the continued advances represented by the current clinical trials in the United States and in African countries.
SCHOETTES: I think we will see a vaccine, but I am not sure we will ever see a cure.
The opinions expressed above are those of the participants and do not necessarily reflect those of Metro Weekly’s staff or freelancers. The responses were edited for clarity and consistency.
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