Want to be part of ending new HIV transmissions this decade? Here’s what you need to know.
Over the last decade, the fight against HIV has been transformed by medical breakthroughs.
England is on track to end new transmissions by 2030, with the HIV prevention medication PrEP, alongside more traditional methods of prevention (HIV testing, condoms, and U=U), proving to “accelerate the downtrend in new HIV infections in recent years”, according to Robbie Currie, lead commissioner of London’s HIV prevention program branded: Do It London.
Jo, 27, from Hackney, has been taking the once-daily pill for two years. It works by preventing the HIV virus from replicating in the body.
“PrEP has totally changed my relationship towards sex,” they say. “Before, sex was always tinged with a slight uncertainty and fear in the aftermath, but since I’ve been taking it, I’ve been able to let go.”
People can enjoy great sex while protecting themselves from HIV. (Stock image via Getty)
PrEP (pre-exposure prophylaxis) is one of four proven methods which, when combined, can stop the spread of HIV. The other three are using condoms, regular HIV testing, and treatment upon diagnosis of HIV to achieve an “undetectable” status.
If people who have HIV have been taking effective HIV treatment and their viral load has been undetectable for 6 months or more, it means they cannot pass the virus on through sex. This is called undetectable=untransmittable (U=U).
Across London, people are combining these four methods to have great, safe sex while helping to stop the spread of HIV.
Benjamin, 32, from Bermondsey, has just become a PrEP user in the last month. Beforehand, he visited his local sexual health clinic every three months to get tested for sexually transmitted infections, including HIV, and he’ll continue to do so now.
PrEP is a daily pill that protects from HIV. (Getty)
“Before I used PrEP, I was pretty diligent about using condoms and getting tested,” he says. “PrEP doesn’t protect against all STIs, so I’ve still been using condoms most of the time and I’m still going to get tested every three months.” (Taking regular HIV tests is a requirement for PrEP).
Phil, 34, from Haringey, was diagnosed with HIV in 2018. He takes one pill every day and is “undetectable”, so he can’t pass the virus on to any sexual partners.
“One thing I was so happy to learn is that if you’re diagnosed with HIV, like me, and you get access to treatment early, then you can live a long life,” he says. “And you can still feel good about yourself and have great sex.”
HIV myths busted
Thanks to PrEP, improved access to testing and other medical advancements, London and England as a whole are on track to end new HIV transmissions by 2030 – something which would have once seemed inconceivable.
But there are still challenges ahead to reach the goal. Currie says that misconceptions around HIV are still an issue and HIV related stigma is still present.
“People aren’t aware of how much treatment and prevention options have advanced,” he says. “And one of the biggest misconceptions is that someone with HIV can still pass it on if they are on effective treatment, which we know isn’t true.”
People with HIV can live long, healthy, happy lives on effective treatment. (Stock image via Getty)
Another misconception, Currie says, is that people on HIV treatment have drastically different health outcomes in later life.
“If you have HIV and receive treatment early, there is no reason why you won’t have a normal lifespan,” he says.
Something else people aren’t always aware of is that, if you have unprotected sex and you aren’t on PrEP, there is medication that can be taken for 72 hours afterwards.
PEP (post-exposure prophylaxis) is a short course of HIV medicines taken very soon after a possible exposure to the virus, to prevent it from taking hold in your body.
The best place to get PEP is a sexual health or HIV clinic, but if you need PEP over the weekend or outside of office hours, when clinics will often be closed, it’s available at accident and emergency departments.
Condoms are one of the four proven methods of preventing HIV. (Getty)
In an ideal world, PrEP and condoms would prevent such a situation from arising. But sex doesn’t always pan out that way. “Now that we have PrEP, what we’re trying to do is shift the dial a bit,” Currie explains. “So if you’re at a period in your life where you may be more exposed to HIV, then we really want you to be on PrEP.”
The good news is that we now have the tools to eliminate HIV, because there are prevention and treatment medications that are effective.
“Our latest Do It London campaign called ‘Be sure, know the four’ seeks to raise the awareness and uptake of the methods of HIV prevention to those most at risk.” Currie says. “The campaign is funded by all of London’s local authorities who remain committed to ending new HIV diagnoses by 2030.”
If you were diagnosed with HIV in the first fifteen years of the AIDS pandemic, your doctor might as well have handed you the diagnosis with one hand and with the other a death certificate, just waiting for the appropriate date to be filled in. Having HIV was an almost certain death sentence. Those of us who were diagnosed as HIV-positive in those years were told to “get your affairs in order,” meaning, “prepare to die.”
Many of us did exactly that: we quit work, lived on SSDI payments, settled debts if we could, alerted our friends, and learned to live with the constant expectation that we could meet an ugly, painful death at any time. Very few of us were able to “keep hope alive.”
That long-awaited hope arrived in 1996 with the advent of HAART (Highly Active Anti-Retroviral Treatment), the first efficacious treatment for HIV. Suddenly, the possibility of “living with HIV,” instead of “dying of AIDS,” became a reality for those of us with access to HAART. We rejoiced — we were going to survive the virus that had taken so many of our friends, lovers, and family from us! We tore up those proffered death certificates — we were going to live!
We soon realized, however, that surviving the pandemic, living with HIV, would bring its own problems. Those of us who couldn’t work and lived on SSDI were trapped in poverty; and the outrageously expensive medications we took, while saving our lives, caused innumerable new medical problems: chronic fatigue, accelerated ageing, loss of bone density, liver diseases and failure, a propensity for various cancers, enhanced risk of cardiovascular diseases, and myriad comorbidities. Further, in the pre-U=U days, we lived in fear of transmitting the virus to others. And surviving did nothing to lessen the stigma we faced for being HIV-positive, often within our own communities, causing an epidemic of isolation, loneliness, despair, and depression.
Human beings are meant for more than just “surviving,” we are meant to thrive. But how does one thrive while living with a still-debilitating, stigmatized virus? To find out how some have thrived, and not merely survived, I talked with three long-term survivors, friends from a Thursday night writing group, about their growth from surviving to thriving.
Harley, a San Francisco resident, was thirty-four when he acquired HIV; at seventy-six, he has lived with HIV for forty-two years. Like many of us, Harley said he reacted to his diagnosis with “shock and sadness, fear and depression, isolation and hopelessness, desperation and confusion. I was relieved to finally know my serostatus, but it caused distractions at work and negative projections of my profession, social life, love life, family relations, and fear of the future.” After a period of depression and self-mourning, Harley was determined to take care of himself. “I made a commitment to myself that I would not only survive, but strive to thrive.”
That commitment led Harley to a very proactive approach to living with HIV. He connected with other HIV-positive friends; read all the current information about HIV; attended community meetings led by doctors; joined support groups at San Francisco AIDS Foundation, the Shanti Project, and the Stop AIDS Project; joined an HIV-positive yoga class; quit smoking cigarettes and drinking alcohol; and began a healthy natural diet. Of course he continued to encounter barriers to thriving—economic challenges; job stress; the continuous loss of friends, neighbors, co-workers and community members. He credits “yoga, acupuncture, meditation, dharma talks, humor, comedy, dancing, hiking, and swimming” with helping him stay healthy enough to thrive.
Harley said, “service became a new medicine for me. I volunteered at San Francisco AIDS Foundation’s telephone Hotline when it first started at old drafty building on Valencia Street. I also trained at Shanti and became a ‘buddy.’ I spoke at local schools as an AIDS educator and became active with AIDS political activist groups like Project Inform and ACT-UP.” Significantly, he changed professions and started work full-time at an HIV medical clinic. These days, he said, he now deals with “normal geriatric issues rather than HIV fears.”
Rebecca Dennison was diagnosed with HIV in 1990, although she is certain she acquired the virus in 1983 and lived with it for seven years before her diagnosis. “I was devastated. In June 1990, HIV was considered a death sentence. I thought I had only months to live. I was about to start law school when I found out. I decided not to go. Partly because I didn’t think I’d live long enough to finish.” In those days before the ACA, and before the Ryan White Care Act passed, Rebecca continued to work in order to retain her health insurance. “To me, being uninsured meant you were going to die even sooner than you would otherwise. So having insurance was as big an economic issue as having an income.” With the support of her workplace, she continued to work until she could get covered through her husband’s insurance. Despite the support of dear friends and her husband Daniel, “I felt alone and alienated. People were kind but they really couldn’t understand what it was like to be me. I felt like I was living in a 4th dimension where we all saw the same world but experienced it differently. For a while, I felt really angry at HIV-negative people for the privilege of being able to walk away if they wanted. And then I felt ashamed of being angry because I knew it wasn’t fair to be mad at people for being healthy.”
At first, after her diagnosis, Rebecca was afraid to make plans beyond one year. She had planned to become an immigration lawyer specializing in asylum law. When that plan collapsed, “I didn’t know what to do with myself. But AIDS activists, friends, and family all encouraged me to follow my heart and get involved in AIDS activism–and I did.” She threw herself into fighting for herself and others. “I joined ACT UP Golden Gate, went to all the Project Inform town meetings, started going to conferences, and then started WORLD, an organization by, for, and about HIV-positive women (because they were missing in most of those places). Through that work I got to be friends with women from all over the world, especially after I helped start the ICW (International Community of Women Living with HIV/AIDS).
“Of course, coming to love all those people also meant losing hundreds of people as well. That part was tough. It was tragic to see people die in what should have been the prime of their life. And the cumulative grief of hundreds of people dying while most of the world really didn’t give a damn… that wore me down.” She paused her HIV work in 2003 and went off to raise her daughters. After a while, “I just missed it too much. Various histories of AIDS started coming out and the vast majority left women out completely, which really bothered me. So I started writing, got into therapy, and eventually started reconnecting with other long-term survivors. One of the silver linings of COVID was that we were forced to learn how to meet by Zoom. Suddenly, that opened all kinds of doors. I’m in two weekly writing groups with long-term survivors, which I wouldn’t have joined if I’d had to cross the Bay Bridge to attend—and I’m loving it. The writing always provides a way in to connect with more depth than we might if we were just making small talk.”
Activist, writer, and long-term survivor Harry Breaux learned he was HIV-positive in 1984. Harry had contributed blood samples to a CDC clinical study of hepatitis. The samples from 1979 were negative for HIV, but samples he gave in 1981 were positive for HIV. Thus, he deduces that he contracted the virus in 1980, at age thirty-five; he celebrated his seventy-seventh birthday in March 2022.
“Initially, I was not surprised when I was called in and given the results of the HIV antibody test,” he told me. “After having so actively participated in the sexual freedoms of the 1970s, I knew that I probably had been exposed and probably had contracted the virus. As a slow progressor, my physical life changed very little, but my mental and emotional life was devastated. As long as I felt ‘healthy,’ I continued to live a ‘normal’ life on the outside, but mentally and emotionally, I lived with the knowledge that every little change in my physical condition, every sniffle, every pimple, every cough prophesied the beginning of my march toward death. It just never came for 15 years. Then when I did approach death in 1996 [diagnosed with AIDS], the ‘cocktail’ came along to save me.”
Harry Breaux (Photo: SFAF)
Like the majority of us long-term survivors, Harry faced barriers to thriving. “Finding supportive and stable housing and sufficient financial assistance to care for myself. Finding social support from others who understand my situation or the situation of those in similar circumstances. Finding medical services sensitive to my unique physical condition of being HIV-positive and aging.” He credits San Francisco AIDS Foundation, Openhouse, PRC, the Shanti Project, and other organizations with providing rent and food subsidies as well as opportunities to connect with other HIV-positive survivors. “When I first noticed that I was driven by a different sexual impulse and believed I was the only one, that I was flawed, I felt alone and lonely. Being HIV-positive and surviving so many friends left me feeling old, alone, and lonely. But finding the HIV Community and its strength has allowed me to look at my life as one of thriving through the experience of surviving. No longer alone and lonely as a person with HIV, I now recognize thriving as a viable present and future.”
I asked all three of these survivors what “thriving” means to them as opposed to “surviving.” The three of them gave me similar, almost identical definitions. Here’s Harry’s definition:
“Thriving to me means being able to function as a ‘normal’ human being; being able to experience joy and sadness and peace along with love and compassion; being able to take care of my own personal needs. being mentally alert and creative; being able to contribute to the society around me; being able to maintain my independence; being able to experience the ‘normal’ ageing of my body appropriate to my age; being able to assist others.
“Surviving to me means just being able to breathe, move, eat, and shit.”
As members of the AIDS Generation, we long-term survivors have a deep well of knowledge and experience to share with the newly diagnosed. Unsurprisingly, when asked for advice to the newly diagnosed, all three stressed the same things: know that HIV is no longer fatal if you stick to your medications and take care of your health; educate yourself about the virus, its effects, and how to combat them; learn the history of the pandemic; know that you are not alone, flawed or damaged by this virus, but you are challenged to maintain your hope and tenacity in its unyielding face; know the science, listen to the professionals, and seek to find your own way through; release any sense of shame you may have for being positive; maintain your social life by connecting with other HIV-positive people; volunteer in your community; never hesitate to ask for emotional or financial support from the resources that are available; remain hopeful.
Rebecca offered the most eloquent advice I can think of:
“Pursue your passions. People who feel happy take joy in the happiness of others. People who feel loved want others to feel loved. People who are inquisitive and curious inspire curiosity in others. If you can find a way to lend your time and talent to making the world a better place, all the better. I have seen how having a sense of purpose helps people who are struggling get out of bed in the morning. There’s no ‘right’ way to do this. You do you. Make your art. Write your poetry. Draft awesome legislation. March in the streets. Teach a child to read. Feed someone who’s hungry. Save a redwood tree. Rescue puppies. Grow tomatoes. Smile at the bus driver. Be kind to the checker at the grocery store. Whatever experiences you’ve had up until this point make you a truly unique individual with skills and insights and interests unlike anyone else’s on the planet. If you have a degree, great. But if you don’t, you’re still an expert in lots of things. Don’t overlook the fact that everyone has value and has something to contribute.”
I’ll give Harley the last word: “Trust in your future. Keep Hope Alive.”
Did you know that you could be discriminated against by insurance companies for taking PrEP?
I didn’t.
Recently, I have been searching for long-term disability insurance options while living in California. Long-term disability insurance could offer some peace of mind if some tragic, unforeseeable event left me unable to work. I chatted with an insurance broker, who scanned providers nationwide, and reported back to me that because I took PrEP daily, most insurers wouldn’t allow me to participate in their program. Drugs prescribed for PrEP such as Truvada, Descovy, and Apretude are on a list of “unaccepted” medications.
I received what she said matter of factly. I only heard the information at that moment. I didn’t really process it. It was only later that evening, that the news settled in and it truly struck me–what the actual fuck?!
An insurance policy that excludes people taking PrEP is rooted in misinformation and stigma, and actually has counterproductive outcomes.
We should be encouraging communities, especially those at high-risk, to take PrEP. PrEP reduces the risk of getting HIV from sex by about 99% when taken as prescribed, therein offering the promise of finally managing and ending the spread of this virus when combined with access to screening services.
While only 3% of the 1.2 million people for whom PrEP is recommended were prescribed it in 2015, that number rose to 25% in 2020, demonstrating the notable gains achieved. But what’s stopping this number from reaching 100%? I believe it’s interactions like those between this insurance broker and myself that contribute to the hardship that people still face for trying to protect their health.
California’s first openly gay Insurance Commissioner, Ricardo Lara, has decidedly taken on insurance companies to protect those seeking access to PrEP services. An investigation by the Department of Insurance examined life, disability income and long-term care insurance companies and discovered evidence that “some insurers had denied or limited coverage, restricted products available through accelerated underwriting, placed conditions on coverage, or charged higher rates to users of pre-exposure prophylaxis, or PrEP, medication.”
Accordingly, The Department of Insurance issued a notice reminding insurers a person’s history of PrEP use cannot be used as a justification to deny life, disability or long-term care insurance coverage or charge higher premiums for that coverage under California’s The Equal Insurance HIV Act, which becomes enforceable starting January 1, 2023.
But insurers don’t have to wait until then to do away with discriminatory practices. That’s why I texted the insurance broker and asked her if she could be an ally for queer people and remind the underwriters she’s in communication with that this should not be allowed and, at least in California, won’t be allowed soon. She didn’t respond, but I hope she’s thoughtfully considering my message.
The impact of this law especially brings me comfort as a Black, gay man, because I’ve seen how HIV and AIDS have disproportionately impacted my community. Tools for combating this virus should not be made any more challenging to access than they already are. Some estimates show that 1 in 2 gay black men may contract HIV in their lifetimes. Anything we can do to provide relief to our already-hurting community is welcomed.
Apart from institutional forces such as the archaic, discriminatory insurance policies that create stigma around PrEP use, there are also social ones. Some folks who take PrEP are called “Truvada whores.” There is a perception that because they’re taking the medication they must be very sexually active, and unfortunately both everyday folks and even the medical community themselves aren’t immune to this perception.
In actuality people who take PrEP are a part of the solution for stopping the spread of HIV. But, they may feel like they’re doing something wrong or that they have to hide thanks to this stigma. No one should feel like they’re being punished because they’re trying to take control of their health.
Terrance Wilder was diagnosed with HIV at the age of 20, and now works with San Francisco AIDS Foundation to help others gain access to PrEP. He’s deeply concerned about making sure access to PrEP is available to people who need it the most.
“If a person doesn’t have a stable place to live or consider themselves homeless, PrEP most likely will not be as much of a priority for them although they may be putting themselves at risk daily,” Wilder said. He’s also seen how transportation can be a barrier as some folks may can’t make it to their appointments or to pick up their medications, and mental health disparities can be barriers for folks in many ways.
Laws are just one tool to affect change in our society. How we treat each other and support each other on the individual level creates an environment that moves our society towards addressing health access and equity as well. One of the most dangerous things we can do for society is to allow being uninformed to create additional harm onto communities needing our help the most.
Europe has seen a rise in undiagnosed HIV infections — the World Health Organization (WHO) and European Center for Disease Prevention and Control (ECDC) reported that between at least 2018 to 2021, there have been more HIV infections than diagnoses.
The full report showed that testing rates fell during the COVID-19 pandemic and has hindered progress toward eliminating new HIV transmissions by 2030.
“We should all be deeply concerned by the data on HIV testing, treatment and care in Europe and Central Asia,” said Dr. Hans Henri P. Kluge, WHO Regional Director for Europe. “Continuing, widespread stigma around HIV is deterring people from getting tested and is steering us dangerously off course from meeting our 2030 goal of ending AIDS.”
A model used to predict the estimated number of infections and comparing that to testing data from 46 of the 53 countries in the WHO’s European region estimated that one in eight people living with HIV in those regions remain undiagnosed.
A disruption in testing and treatment matter. The longer the time period between infection and diagnosis, the higher the probability of death or severe illness. Additionally, it raises the risk of unknowingly passing on the virus to other partners.
The report further discusses the overstretched resources during the pandemic, which ultimately led to many countries struggling to test and report new infections during the pandemic. Under-diagnosis and under-reporting make late HIV diagnosis a major challenge in the region.
Moving forward, new strategies are required to improve early diagnosis. Expanding diversified and user-friendly approaches to HIV testing is thought to help make more people aware of their infection.
World AIDS Day. For most, it is a global event where we honor, memorialize, and celebrate the lives of those we have lost to HIV and AIDS since the pandemic began in 1981. For me it is so much more.
During those early years of the AIDS pandemic, many of us long-term survivors experienced nothing short of a catastrophic loss of life–losing friend, after lover, after friend, after lover, after friend within a very short period of time. At the height of the AIDS pandemic, there were many of us who were attending an average of four memorials a week, in some cases, six or more.
Psychologists call what we experienced “compounded grief,” something that can occur during and after a mass casualty event such as war or natural disaster. Entire communities were affected, and like other events that result in mass casualties, collective grief manifested. We felt powerless to control the crisis consuming us.
Years later, we feel anticipatory grief. We are scarred by our pasts, seeing the loss around us and the problems not yet fixed as we confront new pandemics (Covid-19, MPX) and crises.
What can we do to heal?
I’ve found comfort in these four steps, and I make sure to incorporate them into every day of commemoration, including World AIDS Day. They are: Acknowledge, Memorialize, Take a Break, and Take Action.
Last year, on December 1, 2022, I took a break from my daily life to focus on the grief that I normally tend to push down. This is normally an act of self-preservation: I push my grief away so that I can function. Most days, if I dwell on my grief, it would overwhelm and consume my very soul. On World AIDS Day, I let my emotions surface.
The day began with Inscribe. Created by George Kelly, in 2016, Inscribe began as a way to teach the students at the Harvey Milk Civil Rights Academy about those early days of the AIDS pandemic. As a community–students, parents, teachers, neighbors, merchants, tourists, and community leaders–we inscribe the names of those we have lost along two full blocks of Castro Street sidewalks using chalk. By the end of the day, the sidewalks along Castro Street are a patchwork of chalk art, reminiscent of The AIDS Memorial Quilt. It is a powerful act of acknowledgement and a way to memorialize those we have lost.
The display–and the collective act of remembrance–brought tears to my eyes.
Later that day, closer to sunset, we held a Vigil1 on the steps of San Francisco City Hall, where we acknowledged the contributions of civic leaders and others, past and present who were essential in the creation the service and safety network that San Francisco sets as the standard of care for those living with and at risk for HIV.
Then we marched. Just like we did those early days we held candles in one hand and protest signs in the other. Reminding people that HIV and AIDS is not over.
By marching from the steps of City Hall to the steps of St. John the Evangelist Church, we reminded people that there are still 16,000 people in San Francisco living with HIV and that over seventy percent of them are over the age of fifty. We were led by Ms. Billie Cooper, who reminded us that even forty years later, there are still disparities among communities including among trans and Black and brown communities. Dr. Monica Gandhi, from Ward 86, called upon us to refocus our efforts on ending the HIV epidemic, marched with us. And afterward…
…we DANCED!
Under a sky of Quilt panels hanging from the ceiling of the church–made up of panels of parishioners lost to AIDS–we celebrated and memorialized all who were lost.
Quilt panels on display at St. John the Evangelist Church, World AIDS Day, 2021. Photo: HIV Advocacy Network/SFAF.
We danced to the music made popular by the Sunday Tea Dances popular in the early years of AIDS. I danced to honor Jerry, my first friend who died. I danced to honor Vincent, the love of my life who I had buried, not even three months earlier on October 14, 2021, a day before his forty-sixth birthday. I danced to honor those who stuck by us and cared for us over the years. I danced to honor those who lost not one, not two, but three partners and yet still continued to fight alongside us. I danced to honor those young people who continue to fight on my behalf so that I may continue to have access to the services that I need.
I laughed. I cried. And I was healed just a little bit more than I had been a day before.
And that’s the thing. Each World AIDS Day, when I am able to join my friends, my colleagues, my peers and so many others of my community and take a break, acknowledge my loss, memorialize those losses and take action by marching or by dancing, I am healed a little bit more.
–
1This event was thanks to the combined efforts of Ande Stone and the other members from the HIV Advocacy Network, Gregg Cassin from the Honoring Our Experience group at Shanti, John Cunningham, Joanie Juster and Michael Bongiorni from the AIDS Memorial & Quilt, the folx at Black Brothers Esteem and TransLife with the help from some good friends at City Hall and the Reverend Kevin Deal and the parishioners at the Episcopal Church of St. John the Evangelist, and Dr. Monica Gandhi, from Ward 86.
Today is an opportunity for people worldwide to unite in the fight against HIV, to show support for people living with HIV, and to commemorate those who have died from an AIDS-related illness. Since 1983 Face to Face has been on the forefront of the AIDS crisis in Sonoma County. As we head into our 40th year we are reminded not only of those that we lost to HIV/AIDS but to all those living with HIV in our community. It is our mission to end new cases of HIV while supporting the health and well-being of those living with HIV/AIDS. Our Prevention program performed 678 HIV tests in 2022 alone while our Harm Reduction program has provided 840,000 Syringes to those in need while reversing 3,200 overdoses by supplying people with Naloxone. Our Care Services team has assisted 180 clients with financial assistance, case management, legal and medical advocacy support with 112 clients receiving housing benefit services. Today we take a moment to remember those lives lost and to all those that our team gets to help each and every day by being on the forefront here in Sonoma. Our work is not finished.
Treating HIV symptoms in “clusters” could help improve a patient’s overall quality of life, according to a study presented at the Association of Nurses in AIDS Care 2022 annual meeting.
The evidence, according to Medscape, showed that the four main symptom clusters for HIV include pain, body psychological, gastrointestinal, and body image. These symptoms were also more common in HIV-positive people older than 45.
Natalie Wilson, PhD, assistant professor of community health systems at the UCSF School of Nursing, and a group of colleagues performed a study that also suggested that the elderly population experienced more distress from their symptoms, with the exception of anxiety.
“The symptom burden is still high in people living with HIV,” said Wilson. “The medications got better but the symptoms remain.”
Higher symptom burdens are also linked to a lower adherence to antiretrovirals. Treating groups of symptoms together could lead to targeted interventions, Wilson said, “instead of treating one symptom at a time and increasing the pill burden for people living with HIV.”
In the full study, previously published in The Journal of Pain and Symptom Management, 2,000 HIV-positive participants completed the 20-item HIV Symptom Index. They then reported their symptoms on their first visit to one of six national HIV Centers of Excellence, rating the presence of the symptom from 1 (doesn’t bother me) to 4 (bothers me a lot.)
The younger population reported more anxiety and were more distressed by it, where the older generation found stressors caused more by muscle aches and joint pain.
While this initial study paves way for further studies over time, the current findings have raised some important questions. One of the more important findings in the study was the accelerating aging process HIV-positive patients experienced.
Cheryl Netherly, an HIV nurse and clinical educator for CAN Community Health, said that people living with HIV and dying from age-related comorbidities is something “we never thought would happen. Unfortunately, now we’re losing them to the different things like kidney issues, heart disease, and diabetes.”
After a successful effort earlier this year to ease longstanding restrictions on service members living with HIV, LGBTQ rights advocates are now pushing for more change. They want to end the U.S. military’s decades-old policy of barring people with HIV from enlisting.
LGBTQ advocacy group Lambda Legal filed a federal lawsuitThursday on behalf of three individuals living with HIV: Isaiah Wilkins, a gay police officer in Georgia; a transgender lesbian woman who left the military in 2013 to transition and a straight woman who had dreams of becoming a parachute rigger. (The women are identified in the lawsuit with pseudonyms because they fear further discrimination, according to Lambda Legal.) Minority Veterans of America, a minority-serving organization for current and former service members, is also named as a plaintiff in the suit, which lists Defense Secretary Lloyd Austin and Army Secretary Christine Wormuth as defendants.
Isaiah Wilkins, 23, tested positive for HIV while trying to join the Army Reserves.Lambda Legal
The lawsuit describes the ban on HIV-positive recruits as “incompatible” with modern medical advancements. The policy, the suit notes, has been in place since 1991 — years before the development of groundbreaking medical innovations that eventually transformedHIV from a death sentence into a mostly nontransmittable, manageable condition, with early detection and the right treatment.
Because of medical breakthroughs over the past decades, a 25-year-old living with HIV who is diagnosed early and receives appropriate treatment has approximately the same life expectancy as a 25-year-old living without HIV, the lawsuit says. A study published in 2014 in the Journal of the International AIDS Society found HIV patients who are successfully treated with antiretroviral therapy have normal life expectancies.
Thursday’s lawsuit, filed in U.S. District Court for the Eastern District of Virginia, follows Lambda Legal’s landmark victory in April, decided by the same court, that requires the Pentagon to now allow HIV-positive service members to be promoted and to deploy overseas.
Before the court ruling, U.S. military policy was to place restrictions on service members if they were diagnosed with HIV after they had successfully enlisted. In a memo to military leadership in early June, Austin eased the restrictions on those currently serving, but he didn’t address the policy that banned HIV-positive recruits.
Kara Ingelhart, a senior attorney at Lambda Legal representing the plaintiffs, called the April ruling “incredibly clear.”
“There should be no barrier for folks like Isaiah who want to serve,” she said, referring to the Georgia police officer.
Discriminating against people based on their HIV status has been illegal in the U.S. for every employer other than the U.S. military since the passage of the Americans with Disabilities Act of 1990.
“I think that there’s still just a ton of stigma around HIV,” Ingelhart said. “The military could really set an example for equity and inclusion.”
Wilkins, 23, served in the Georgia National Guard for more than two years. He tested positive for HIV while trying to join the Army Reserves as part of the application process for the United States Military Academy at West Point and was discharged from the Army Reserves in 2019. He called the discharge traumatic, and he said his long-held goal of becoming an Army pilot was “cut off” solely because of his HIV status.
The policy “really does discriminate against people who not only have the ability but the desire to serve,” he said.
NBC News reported in June that every branch of the U.S. military has experienced major challenges in meeting its recruitment quotas this year, as a record low number of Americans are eligible to serve because of increasing health- and crime-related disqualifications — and an even smaller number of them want to.
A Defense Department spokesperson declined to comment on the ongoing litigation. The United States Army did not immediately respond to a request for comment.
Pennsylvania’s Gov. Tom Wolf (D) just signed a new law that makes it a felony to pass on a communicable disease when they “should have known” that they had it, the HIV Justice Network reported.
Opponents of the law worry it will be used to punish people with HIV or other STDs who unknowingly transmit it to sexual partners. Such HIV criminalization laws have disproportionately been used to target Black men and other men of color.
While the offense, a third-degree felony, has to be “intentional,” one could see an arrestee being charged with it if they accidentally spit onto an officer while talking or bleed onto an officer during a violent arrest.
The law also charges people with a second-degree felony if they knew or “should have known” that they had a communicable disease after transmitting it to someone else. The offense is punishable by up to 10 years in prison and $25,000 in fines.
This not only would apply to anyone who transmits HIV; it could also apply to people who unintentionally transmit hepatitis, influenza, chickenpox, and COVID-19.
The bill has been opposed by the Elizabeth Taylor AIDS Foundation, the Anti-defamation League of Pennsylvania, the American Civil Liberties Union of Pennsylvania, the Pennsylvania HIV Justice Alliance, the Positive Women’s Network-USA, the Sero Project, the AIDS Law Project of Pennsylvania, Advocates for Youth, and many other groups.
“As a person living with HIV who was born and raised in Pennsylvania, the passing of HB 103 serves as a reminder that as we get closer to ending the HIV epidemic, we have a long way to go to end HIV stigma and the criminalization of people living with HIV,” said Louie Ortiz-Fonseca, Director of LGBTQ Health & Rights with Advocates for Youth.
Medical professionals have said that HIV criminalization laws do nothing to stop the spread of the virus and may even encourage people not to get tested for fear that the knowledge could subject them to criminal penalties.
A 2018 Williams Institute study on HIV criminalization in Georgia found that “Black men and Black women were more likely to be arrested for HIV-related offenses than their white counterparts.” While 26 percent of HIV-related arrests were of white males, 46 percent of HIV-related arrests were of Black males. Additionally, 11 percent of those arrested were white females, while 16 percent were Black females.
As of 2022, 35 states have laws that criminalize HIV exposure, according to the Centers for Disease Control and Prevention (CDC). Many of the laws were passed at a time when little was known about HIV and millions were dying from the virus.
“Many of these state laws criminalize actions that cannot transmit HIV – such as biting or spitting – and apply regardless of actual transmission, or intent,” the CDC wrote. “After more than 40 years of HIV research and significant biomedical advancements to treat and prevent HIV transmission, many state laws are now outdated and do not reflect our current understanding of HIV.”
A recent study from the Centers for Disease Control and Prevention (CDC) has found that monkeypox disproportionately affects people with HIV and sexually transmitted infections (STIs).
The study looked at HIV and STI rates among 1,969 people with monkeypox in eight U.S. jurisdictions.
Of that sample, 38 percent of people with monkeypox had also contracted HIV in the last year. About 41 percent of people with monkeypox also had an STI in the preceding year. About 61 percent of the sample had contracted either an STI or HIV in the previous year.
Researchers said this correlation doesn’t necessarily mean that having HIV or an STI means you’re more likely to contract monkeypox.
In fact, the higher number may be due to a “self-referral bias,” meaning that people who visited a medical professional due to monkeypox symptoms may also already have established healthcare for HIV and STIs. Either that, or sexual health providers may be more likely to recognize and test for the monkeypox virus among men who’ve had HIV and STIs over the past year.
“Persons with monkeypox signs and symptoms who are not engaged in routine HIV or sexual health care, or who experience milder signs and symptoms, might be less likely to have their Monkeypox virus infection diagnosed,” researchers wrote.
HIV-positive people in the study sample were also twice as likely to be hospitalized due to monkeypox compared to HIV-negative people with monkeypox, WTTW reported.
This could mean that people with compromised immune systems — the kinds associated with advanced and under-treated forms of HIV — are more likely to exhibit severe monkeypox symptoms. Despite this, people with HIV aren’t more likely to exhibit worse monkeypox symptoms than HIV-negative people in the general population, according to Dr. Aniruddha Hazra, assistant professor of infectious disease and global health at UChicago Medicine.
The study also found HIV was more prevalent among Black and Latino people with monkeypox, with rates of 63 percent and 41 percent, respectively. These rates were higher than the 28 percent of white people and 22 percent of Asian people who have both HIV and monkeypox.
These racial disparities are particularly concerning considering that numerous studies have shown that Black and Latino men are less likely than white men to be vaccinated against monkeypox and to have access to HIV-related medical care.
In response to the study’s findings, the CDC recommended that medical professionals prioritize people with STIs and HIV for monkeypox vaccination. Additionally, the CDC recommended offering STI and HIV screenings for people who are evaluated for monkeypox.
This last week, White House health officials voiced their belief that “we’re going to get very close” to eradicating monkeypox. As of September 23, there were 24,846 total confirmed monkeypox cases in the United States, the CDC reported.
