Seventeen years after being infected with HIV, Ronald Jesser was dying. His immune system ravaged by the virus, he had developed stomach cancer in 1992. Over the next five years, three surgeries and three rounds of chemotherapy had done little to improve his prognosis. He moved in with his friends in Palm Springs, California, to ease the burden on his adult children over his final days.
In Palm Springs, he needed to find new doctors: a primary care doctor, an oncologist and an HIV specialist. As luck would have it, an HIV doctor was opening a new practice in town.
“You can be his first appointment on Monday morning,” the receptionist told Jesser.
Weighing just 122 pounds and supporting his frail frame with a walker, he couldn’t even manage the stairs to the doctor’s office. Inside he told him his history.
“There’s a new drug regimen coming out, and they’re calling it the cocktail,” Jesser recalls the doctor saying. “I think you’re a perfect candidate for it.”
The new drugs worked in concert to interrupt the replication of the virus at different stages, limiting the ability of the virus to outwit any one of the drugs on its own.
“You’re going to make it,” the doctor reassured him.
“I didn’t believe it,” Jesser said. “But it was nice to hear.”
Within six months, Jesser, 66, who now lives in Bend, was back up to 160 pounds. For the first time since he learned he was HIV-positive, he felt his body getting stronger. He went back to working out at the gym, and the friends who had taken him in on his deathbed were ready to kick him to the curb.
“You know what? You’re not dying, and we’re tired of you,” they joked. “You need to find a place to live.”
The cocktail of antiretroviral drugs introduced in the mid-’90s, and refined over the next two decades, changed the face of the HIV/AIDS epidemic. The drugs were so good at bringing people back from the brink of certain death, doctors dubbed it the Lazarus effect.
“When the cocktails came out, people just picked up their stuff and went home,” said Dr. Davey Smith, co-director of the San Diego Center for AIDS Research. “It was like the most modern miracle I’ve seen in my whole life.”
In 1997, the first year after the new drugs were widely available, the death rate from AIDS-related conditions had dropped 47%. The new treatments transformed HIV from a disease that killed nearly everybody to one nearly everyone can now survive. Many of those living with HIV can now take a single pill once a day and keep the virus so well controlled, it is undetectable in their system, and for all intents and purposes, untransmittable. Yet, somehow, 7,000 Americans still die from AIDS-related complications each year.
Socioeconomic factors, treatment fatigue, long-term damage from the virus, post-traumatic stress and pervasive stigma have created their own toxic cocktail of barriers that keep many people from benefiting from a near cure to the disease and stand in the way of an end to the epidemic.
An unknown risk
Jesser met the love of his life in 1980. He had recently separated from his wife, a marriage of convenience that had produced two daughters but left him depressed and suicidal. His barber introduced him to Mitch Samuels, who was working as a travel agent, aerobics instructor and waiter. They met at a bar in Laguna Beach, California. Jesser went home with him and never left until Samuels died of AIDS in 1992.
Neither of them knew Samuels was HIV-positive when they met. There was no test for it. Nobody had even heard of the virus at the time. But just a couple of weeks after they started dating, Jesser came down with an inexplicable illness. It was only years later that he deduced that’s when he got infected. By 1983, Samuels started getting sick. He was pale, lethargic, losing weight.
“We thought it was cancer,” Jesser said. “The doctor didn’t know what was going on.”
Soon, everyone was talking about the horrible gay disease, gay cancer, gay pneumonia. When Samuels took a turn for the worse, Jesser took him to the emergency room at a hospital in Newport Beach, California, at 11 p.m. They waited all night but no one came to check on him. At the 7 a.m. shift change, a nurse poked her head past the curtain.
“You guys need to go home,” Jesser recalls her saying, “because nobody is coming in here.”
The staff knew they were gay, they knew Samuels was sick, and they were terrified of them. The nurse handed them a card of a specialist in opportunistic infections.
“I packed him up and took him home to bed,” Jesser said.
He called the specialist and explained what had happened.
“I just don’t understand,” he pleaded with her.
She told him to come by her office the next day, but to use the back entrance. She diagnosed Samuels with a digestive tract infection but suspected his immune system was compromised. They called his primary care doctor, and she told him Samuels likely had an immune deficiency disorder.
“In their terms, that meant he had the disease,” Jesser said.
Moving HIV from a universally fatal disease to a chronic condition is one of the great success stories in public health. It took years of confrontation by gay activists before the U.S. government and the scientific community put resources into finding a treatment. But once those drugs were found, lawmakers put in place a system to ensure that anyone with HIV could afford them. Efforts like the Ryan White HIV/AIDS program, named after a hemophiliac who contracted HIV through a blood transfusion, provided funding for medications for those who didn’t have the money to pay for them. And more recently, the expansion of Medicaid under the Affordable Care Act moved many living with HIV into the mainstream health care system.
Still, what is keeping many from getting their virus under control are the same factors that drove the HIV epidemic in the first place.
Dr. David Bangsberg, dean of the School of Public Health at Oregon Health & Science University in Portland, got his start in medicine as an HIV specialist in the early 1990s at Columbia Presbyterian Hospital in North Harlem.
“What caught my attention was not only the suffering, young people dying, but that it was so intertwined with social forces,” he said.
Being gay was stigmatized, injection drug use was stigmatized, the virus itself was stigmatized, and all of it was compounded by racism, marginalization and homophobia.
“It was clearly caused by a virus, which got amplified by social forces,” Bangsberg said.
In 1994, he moved from New York to the San Francisco General Hospital, the epicenter of the epidemic, working in the infamous Ward 86, the first dedicated HIV clinic in the country.
The job of an AIDS doctor before 1996, Bangsberg explained, was to make a connection with usually a gay man or a drug user, to help them understand the disease, to keep them alive as long as possible, using suboptimal medications to slow down the virus. Doctors would diagnose and treat opportunistic infections that took advantage of the weakened immune system. If patients were diagnosed early, they could do well. But once their immune system was too badly damaged, his job became managing a meaningful, comfortable, painless death.
“You were both an intensivist (critical care physician) and an infectious disease specialist, trying to sleuth out disease and treat really complicated diseases as best as possible,” he said. “And then there was a transition to being a hospice doctor.”
But in 1996, the advent of new medications that could keep the virus from multiplying changed that grim outlook. Doctors could treat patients instead of simply managing their deaths.
“You could take someone who was on death’s doorstep, bedbound, skin and bones, and they would get strong in a matter of weeks,” Bangsberg said. “We were just blown away. And many of those people we treated in 1996 are still alive today.”
Life expectancy for those on the medications is now approaching that of the general population, and in recent years, scientists have discovered that when the virus is undetectable in the bloodstream, it cannot be transmitted to others,
“HIV treatment now becomes this miracle treatment to keep somebody alive and allow them to live a long and healthy prosperous life,” Bangsberg said.
The challenge, he said, is there are pockets of the population where there is still sufficient stigma, or where medical services, education and support have not penetrated, that allow the epidemic to fester: gay black men in the south, transgender men and women, people with mental illness or substance use disorders.
Among the 15 wealthiest countries in the world, the U.S. has the lowest rate of viral suppression, and it’s primarily due to the societal factors rather than science or money.
“The social drivers of this epidemic being poverty and hunger and homelessness,” said Tyler TerMeer, executive director of the Cascades AIDS Project in Portland. “If you don’t have a stable roof over your head, or you’re choosing to buy groceries for your family over paying the copay for your medication that month, you may or may not depending on what becomes the higher priority in your life.”
Some living with HIV can’t afford an ACA marketplace plan, or the high deductibles or copays that come with coverage. HIV medications are often in the higher specialty tier that can require a copay of 50%.
TerMeer has been living with HIV for 15 years, and says, if he had to pay out of pocket for his medicine, he’d be paying close to $3,000 a month.
Those financial challenges have forced HIV outreach efforts, such as Cascades AIDS Project, to try to address the social drivers of the disease, along with the clinical. They work to ensure people with HIV have access to housing and employment. They run a furniture warehouse program that provides a bed and pots and pans for those who get a housing voucher.
“We really believe in this housing is health care model,” TerMeer said. “Figuring out what is going to create stability in their lives.”
The group is still battling significant stigma over HIV, and in many areas of the state, identifies only as CAP or doesn’t identify itself at all to avoid drawing attention to the status of the people they serve.
“So many people are not out about their status out of fear of discrimination, fear of violence in more rural parts of the country, and so people tend to isolate. They tend to fall into depression in those areas, where they don’t know who they can trust or not with their own safety.”
In some communities, people with HIV still do not feel comfortable disclosing their HIV status or even that they are gay or inject drugs. That keeps many from being tested for HIV in the first place and from getting the medications they need to control the virus.
“It’s actually a choice that some people make to just not disclose,” said Jim Clay, a CAP program manager, “Because they believe, and some rightfully so, that their lives will be upended.”
With signs that Samuels’ immune system was failing, he and Jesser went to their doctor. By 1985 a test was available to determine whether they were infected. It would take six weeks to get the results. They both gave blood samples and waited anxiously.
Samuels was starting to panic. He was sure he had the disease. His mother found a doctor who said he could get him an answer within 10 days. So she and Samuels drove up to Los Angeles to take the test. Ten days later, the doctor called back.
“Congratulations! You’re negative,” he told Samuels.
“It was like party time,” Jesser said. “Because then it was, ‘You could have cancer, you could have anything,’ but nothing was worse than AIDS.”
The two men rejoiced in the news, but four weeks later their regular doctor called and asked them to come in for their test results. Samuels told him he didn’t need to. He had already been tested and found out he was negative.
The doctor had no choice but to break protocol about giving the test results over the phone. It wasn’t true. They had both tested positive.
“I’ll never forget it,” Jesser said. “They just as well could have shot us. It was over. Everybody we knew was either sick or afraid. It was like a bomb was going off everywhere. It was like a war that was happening.”
Samuels continued to get sicker, and over the ensuing years cycled in and out of the Newport Beach hospital with various opportunistic infections. The hospital had an entire floor just for AIDS patients.
“People went in and they never came out,” Jesser said.
Samuels and Jesser were regulars there and the staff knew them well. In 1992, Samuels was hospitalized with pneumocystis pneumonia, a condition that typically affects those with compromised immune systems and had been killing many men with HIV. But he was feeling better and, as was their tradition when Samuels was about to be sent home, they threw a hospital party. They invited some friends, ordered pizza and drank sodas and beers and martinis.
Samuels called the next morning. Jesser could barely understand him. He rushed down the five blocks from their home to the hospital. The hospital had called a code blue. Samuels’ heart had stopped. They revived him in the ER and put him on a ventilator.
Samuels had indicated he didn’t want any extreme measures, but the doctor told Jesser that Samuels was doing so well, he thought the ventilator might give time for the antibiotics to work. That sounded reasonable, so Jesser acquiesced and he went to see him.
Samuels flipped him off.
“I told him what was going on and he seemed to understand,” Jesser said. “Then about four hours later the doctor came in and said his lungs are shot. There was nothing more they could do for him.”
They decided to turn off the ventilator. Jesser climbed into the hospital bed next to Samuels and guided him through a meditation. “Let’s go to Makena,” he told him. And Samuels understood exactly what he meant. They had visited Makena Beach in Maui years earlier, and they routinely visualized walking down the wet sand together again.
“Oh man, it’s a beautiful day,” Jesser began. “The beach is empty, it’s just you and I. Let’s walk up over the rocks. Here I’ll help you up. Let’s just stay here.”
He guided Samuels through everything he could possibly imagine seeing. And Samuels died right there, not in a hospital bed, but on a tropical beach far, far away.
In 1992, the year Samuels died, more than 32,000 Americans died from AIDS. The death rate peaked in 1995 at nearly 42,000 deaths, and then dropped precipitously with the advent of antiretroviral drugs that made up the drug cocktail. Rates have now plateaued at about 7,000 AIDS-related deaths a year.
According to a CDC estimate, about 85% of those infected with HIV have been tested and know they are HIV-positive. In Oregon in 2017, an estimated 8,787 people are living with HIV. Three out of four of them are men.
Of those, 7,557 received a positive test result, but only 6,300 were being treated for the infection. And of those, 5,648 had their viral rates suppressed.
Oregon is one of a handful of states that have implemented a plan to end HIV transmission, an approach now mirrored in an initiative announced this year by the Trump administration. Those plans rely on a three-pronged approach of testing, prevention and treatment.
“We’re working with 2016 data that says that only 37% of Oregonians have ever been tested for HIV in their lifetimes,” said Dr. Tim Menza, medical director of the section of the Oregon Health Authority that handles HIV, sexually transmitted infections and tuberculosis section at the Oregon Health Authority. “And we estimate based on insurance data that less than 5% of people with insurance were tested in 2016. So we have a ways to go there.”
For those who are negative, the plan is to keep them that way with prevention strategies such as condom use, needle exchanges and drugs that prevent the transmission of HIV. For those who are positive, the goal is to get them into treatment and retain them so they can get the virus down to undetectable levels.
“For the general public, for folks who are not doing this work every day, it may have fallen off the radar,” Menza said. “There’s a lot more work to do. We kind of got the low hanging fruit, but now it’s time to climb the tree and pull the other stuff down.”
From 2012 to 2016, more than a third of Oregonians diagnosed with HIV were being diagnosed late, having already progressed to AIDS, or getting there within 12 months of their diagnosis.
“In Oregon, at least in my practice, I tend to see a lot of patients who are new diagnoses that present very late in the course of their illness,” said Chris Fox, a nurse practitioner at OHSU and president of the Cascade Chapter of the Association of Nurses in AIDS Care. “A lot of times they are suffering from AIDS-related complications at that point.”
While many can be brought back with HIV medications, some have cancers or pneumonias that have progressed so far, they cannot be treated.
Fox said that’s because HIV screening is still not universal. Current guidelines call for everyone to be tested for HIV at some point in their lives, and those with high-risk behaviors to be tested more frequently. But Fox said many of those who aren’t thought to be in high-risk groups aren’t screened at all.
“The classic scenario is someone who has been in a monogamous or semi-monogamous relationship for a good part of their lives, and they don’t use substances, and through no risk factors of their own end up getting it from a partner and don’t know it,” he said.
Their doctors don’t consider them at risk for HIV, and so don’t pick up on signals such as rapid weight loss or repeated shingles outbreaks, as signs of an HIV infection.
“HIV is not on their minds as a disease that’s around anymore,” he said.
Once those patients get diagnosed, the medications work so well, he can generally bring down their viral load within a matter of two to three months.
“I can prescribe the meds; I just can’t get them into someone’s body,” Fox said. “Sometimes HIV is not their top priority.”
The U.S. has made such great progress in battling HIV that many doctors have never seen a case of AIDS, the end stage of an untreated infection. Moreover, since the passage of the ACA and the Medicaid expansion, many individuals living with HIV are now being moved out of clinics run by HIV specialists and funded with Ryan White dollars, into primary care clinics in their communities now that they have insurance.
“And guess what? They don’t find a provider there who is knowledgeable and experienced in managing the treatment,” said Dr. Ricardo Rivero, executive director of the Midwest AIDS Training + Education Center. “The guidance is very clear, easy to follow. But still most providers get intimidated. ‘Oh, I’ve never managed one. What do I do? Let me send you somewhere else.”
Meanwhile many of the veterans of the HIV epidemic, who have cared for patients for the past 30 years, are now retiring, taking with them a wealth of knowledge about how HIV infections progress and how best to manage them.
“I’m very concerned about the risk we take if we don’t train the health care workforce appropriately, to have a step back in the epidemic,” Rivero said. “If patients don’t get the care they need to stay virally suppressed, those patients are going to be putting others at risk.”
Michael Stewart came of age in the 1970s, a time of gay liberation, when men were having sex “everywhere with everybody.” Attending college at San Jose State University, he spent his free time in the bathhouses and gay bars of San Francisco. In 1986, he wanted to move in with his partner, who insisted they both get tested. When Stewart told him over dinner that his own test came back positive, the relationship was over.
“Gee, Michael,” Stewart recalls him saying, “I don’t think I love you anymore.”
At his doctor’s urging, he joined a support group at the Gay Center in Long Beach, California, with some two dozen men who had also recently tested positive. At the time, the statistics were grim. Three out of four living with HIV would be dead within 18 months.
“From the people I knew, that was true,” Stewart said. “I’d already known maybe four or five people who had died.”
Many of the people in the support group had been abandoned by their lovers, shunned by their families. And after a while, they too started to die.
“At that point — I see it now, but I didn’t realize it at the time — I started completely isolating myself. I had just stopped making friends because everybody was dying,” Stewart said.
He suffered through the early days of antiretroviral drugs, which caused horrible nausea and diarrhea. But in 2008, when the recession hit, he was laid off from his job and lost his employer sponsored health coverage. He continued to pay his premiums on his own, until his money ran out. Broke, unemployed and uninsured, he had nowhere to go, no one to turn to.
His brother and sister-in-law took him in at their remote farm house in the middle of Iowa. The state had a six-month waiting period to get onto a federally-funded, state-administered program to pay for HIV medications.
“I said, you know, what the f---, I don’t care if I live or die anymore. There was no place to get a job where I was and it was just as hopeless,” he said. When the six months expired, he didn’t bother applying.
By April 2014, he came down with what seemed like a cold or the flu, that never went away. He suspected it was pneumocystis pneumonia. When he started turning blue, the brother and sister-in-law took him to the local hospital.
Doctors there confirmed his suspected diagnosis, and sent him to a larger academic medical center at the University of Iowa in Iowa City. He was restarted on HIV medications, and released after three weeks. He has since moved to Portland where he volunteers for a number of HIV organizations, including Our House of Portland.
“Why don’t people keep up on their medications? For me it was money,” he said. “And that’s still the case for many people today.”
Hope for a cure
While today’s medicines are effective at tamping down the virus, one of the shortcomings of the current strategy to end HIV is that individuals are already infected must stay on those medications for the rest of their lives. And that requires pretty much everything else in their lives to be going right. It wouldn’t take much for HIV to make a comeback. In fact, many HIV experts are warning that because of the progress made in treating the infection, people are less scared of contracting HIV. Infection rates, particularly among the younger age groups, are starting to tick up.
“This epidemic is far from over,” said Dr. Louis Picker, associate director of the OHSU Vaccine and Gene Therapy Institute. “We’ve gotten very complacent about it because the miracle of the drugs. For people like Magic Johnson, it’s no different than having high blood pressure.”
Picker believes an HIV vaccine is still vitally important.
“If it works, you could take it once or twice and then be protected,” he said. “Human nature being what it is, the health care systems worldwide being what they are, it’s not likely we’ll be able to treat our way out of this epidemic.”
Picker has been working on one of the more promising HIV vaccine candidates at OHSU, and expects the vaccine to begin human testing in clinical trials starting in 2020.
HIV has been a remarkably tough nut to crack, in part because it is a persistent virus. With viruses such as measles, polio or smallpox, if a person survives the initial infection, he or she generally has lifelong immunity to the virus.
“Nobody gets HIV and recovers from it,” Picker said. People progress at various trajectories, but eventually the vast majority will succumb without treatment. Humans are exposed to many persistent viruses, and over time, both humans and viruses adapt to allow that virus to live within the body without causing disease. Cytomegalovirus is a good example.
“Most of the world has it and most of the world will never get sick from it, because it sort of co-adapted with us, so it doesn’t cause disease except in unusual circumstances,” Picker said.
HIV made the jump from monkeys and chimpanzees to humans only fairly recently, probably in the 1800s in equatorial Africa.
“It was adapted enough to infect us, but not so adapted that it lives semi-peacefully with us,” Picker said.
The standard ways that the immune system attacks viruses don’t work with HIV, and so the virus is able to evade it.
“The only way to get at this disease is to create an immune response that it doesn’t expect,” Picker said. “To find chinks in its armor and to direct the immune response at those chinks.” That’s what the OHSU vaccine and other vaccine candidates are trying to do. But it could be years before a vaccine might be available to eradicate the virus.
Smith, the director of the San Diego Center for AIDS Research, still believes a cure is possible, one that wouldn’t require individuals to take antiretroviral drugs for the remainder of their lives.
“There’s still a lot of stigma living with HIV, and if we are able to cure them, then I think that would be very helpful,” he said. “I think there is good societal and individual benefit from that.”
So far, only two people in the world have been cured of HIV. Both required bone marrow transplants to treat a cancer. Doctors were able to find marrow donors who also had a natural resistance to HIV. They killed two birds with one stone. But Smith says that’s not really a scalable solution.
You don’t want to have a bone marrow transplant unless you have to have one, he said. “Those guys got one because that was the only way they were going to live otherwise.”
But scientists have yet to figure out how to rid the body of the HIV completely. Other viruses, like hepatitis C, hang out in the cell, and use the cell machinery to churn out new copies of the virus.
“HIV takes its genes and inserts them into the human’s chromosome,” Smith said. “Once it’s in the human chromosome, our body can’t figure out how to get rid of it.”
While work on a cure is ongoing, there may not be the sense of urgency there once was, and that may be stymying progress.
“I think we’ve become a little complacent in trying to get both a cure and a vaccine,” Smith said. “The drugs, I wouldn’t give them up for anything in the world. They have saved so many lives, patients and friends that I know. But we still have more science to do.”
Our House of Portland, where Stewart volunteers, opened in 1988 after a handful of Portlanders read an article about a homeless man with AIDS who died on the streets. They formed a nonprofit and opened a five-bed foster care facility. Two years later they moved to a bigger house, and by 1992, had cared for more than 100 people dying of AIDS.
As the death rate climbed, they focused on palliative care and grief counseling, often turning away potential residents because they had no more room. When the new antiretroviral drugs became available, for the first time they started discharging patients and the role of Our House shifted from a hospice service to a support program.
They added social workers and therapists to help people with HIV live independently in the community. They opened Esther’s Pantry, which provides food and personal care items to low-income people with HIV, and Tod’s Corner, a thrift store providing free clothes and household goods.
“The good news is if you get HIV, it doesn’t kill you like it used to. But the bad news is, now it’s become a chronic disease,” said Mary Rita Hurley, executive director of Our House. “And because it’s become a chronic disease, it complicates things.”
Hurley said the average age of the 14 residents at Our House is 60. Many have lived with HIV for decades, and both the virus and its treatments have taken their toll on their bodies.
“What we’re seeing is years and years of being immunosuppressed. Every body system is affected by this,” she said. “It kind of ages people prematurely.”
Many of their clients also deal with mental health or substance abuse challenges. Many are homeless and have nowhere to keep their medications, or face significant challenges getting their appointments. No matter how good the medications are, some people’s circumstances simply don’t allow them to stay on top of the virus.
Hurley said many struggle finding stable housing. Even when foster homes or other facilities have an open bed, they hear HIV and the space suddenly vanishes. Finding a place to sleep or worrying about their next meal becomes their priority.
“HIV is the least of their problems,” Hurley said.
Last year, Mark S. King, a writer and HIV activist in Baltimore, was shocked to learn his friend Antron-Reshaud Olukayode had died of AIDS at 33. Olukayode was a writer and an HIV advocate himself, hardly the sort of person King would have thought could have let the virus get the best of him.
“Somewhere along his journey, things changed,” King wrote in a blog post for POZ magazine. “He seemed depressed. Medications stopped.”
King began to investigate why 7,000 people a year still die of AIDS, why people stop taking their medications, ignore symptoms or hide their illness.
“I was alarmed by those numbers only because you would think in a modern country like ours, we would be doing better,” King said. “We all live in a very privileged country, at least for those of us who are, in fact, privileged.”
What King discovered in talking to people living with HIV, their caregivers and community activists was that social determinants of health are still driving the HIV epidemic.
“It’s really a very clean line of demarcation between the haves and the have-nots,” he said.
Some deaths, although tragic, he could almost understand, given the state lack of care for the marginalized in our society: People living in states without Medicaid expansion, who don’t get tested and diagnosed quickly, those who show up in the ER with advanced AIDS and end up dying of pneumonia within a couple of days.
“I understand that problem and what is driving those deaths,” King said.
What surprised him were two other groups of people dying of AIDS.
There are those, he said, who know what it’s like to be on treatment and are facing other challenges that are preventing them from getting their viral load suppressed.
“And they’re almost embarrassed to say so,” King said. “Because they’re supposed to be a success story.”
They’re too embarrassed to say it’s been three months since they took their medication, because their doctor at the clinic left and they haven’t found a new one, or they hit a cap in their medical insurance, or the copays went up and they’ve been short on cash. Maybe their clinic is too far away, and the bus doesn’t go there or they have to take a full day off work to get to their appointment.
“I mean literally the difference between life and death for a lot of people is transportation,” King said. “Those are the determinants, which are very practical — housing, food, transportation — that people put ahead of their medical care.”
But perhaps more concerning was the second group, those who had been virally suppressed for years and now are experiencing treatment fatigue. Some may be experiencing side effects from their medications, or sometimes their life situation changes. Others simply get tired of taking a pill every day, a daily reminder that for all the talk that they can live a normal life, they are still HIV-positive.
“I operate in the HIV arena, and I go to AIDS conferences. I deal with a lot of so-called empowered people with HIV,” King said. “It’s even among those folks we are seeing unexpected deaths.”
Many of those most active in the HIV advocacy community are becoming increasingly concerned about an emerging hierarchy among HIV patients, a dividing line between those who have their HIV under control and those who do not. With pre-exposure medications that prevent infection and antiretroviral drugs that drive the virus down to undetectable and untransmittable levels, there seems to be little reason why anyone should be affected by HIV anymore, much less die of AIDS. But that ignores the many factors that keep people from benefiting from these advances.
“There’s a big raucous parade and we’re all celebrating all of that,” King said. “While we’re busy over hear cheerleading for (undetectable equals untransmittable) and heralding this advancement in this new science, half of the people haven’t achieved that and it’s easy for them to feel like failures.”
Certainly those who remember the horrible days at the peak of the epidemic look at those medications as a godsend, something they dreamed about while sitting in pews at funerals or bedside watching another friend succumb to the disease. For many, it’s unthinkable that someone could pass on a treatment they would have once given anything to find, that people could forget the hundreds of thousands of deaths that came before.
“But a lot of us are dealing with unresolved trauma of the individual diagnosis,” King said. “It still isn’t easy to get an HIV test result in the United States and expect that life is going to be hunky dory. There’s so much social stigma, judgment, all these things still very much exist, enough so it just might keep somebody from wanting to have an HIV medication sitting in their drug cabinet.”
Clay, the Cascade AIDS Project volunteer, says that sort of unresolved trauma is pervasive among the people living with HIV.
“There’s a larger context,” he said. “It’s not just living with the virus in their bloodstream, a medical circumstance, but a circumstance where someone has lived through in some cases 30, 35 or more years of an epidemic that saw every single one of their friends die, that saw their spouse die, their second spouse and their third spouse die. Now they’re finding themselves at age 60 or age 70 utterly and completely alone.”
Researchers have coined the term AIDS survivor syndrome to describe a constellation of symptoms they see in long-term survivors of the epidemic. Many lack any sort of vision for the future, a lack of belief that tomorrow will come, leaving them living only for today.
“If everything is done completely for today, people are much more prone to high risk taking” Clay said.
If they see no future, the value of taking their medications, of keeping their viral load suppressed, becomes diminished. Many withdraw into isolation, unwilling, perhaps unable, to form new friendships.
Clay recently launched a CAP initiative called Aging Well aimed at helping those long-term survivors deal with the realities of aging with HIV, including that long-term trauma. He spent six months interviewing older adults who are living with or affected by HIV. One man told him simply he believed his life had reached its end. It wasn’t so much a feeling of despair or of giving up, but that his life had run its course, as if he were a running a marathon and the finish line was in sight.
He had lost two partners and couldn’t imagine entering into another relationship. He spent his days alone. He was dealing with the aches and pains that come with aging, but arrive sooner for those whose bodies have been battered by a lifetime of HIV and the sometimes brutal treatments for it. Medications used in the past have left survivors with premature osteoporosis, liver problems and joint pain.
“It was more of observation. ‘I believe I’ve done it. I believe I’m finished,’” Clay said. “He couldn’t see any prospect or any way to move to another chapter of life.”
What’s more, Clay says, that feeling isn’t unique to those who have the virus in the bloodstream. Plenty of people without HIV have experienced that same trauma, a lifetime of loss and sadness, having lived through the epidemic.
“That’s true for HIV negative long-term survivors, who have been through that experience,” he said.
Clay lived through the worst of it, watching his friends and his husband die.
“I found myself at 65 with no friends and getting old, and getting tired,” he said. “What is the point of meeting new friends? Are you going to sit down and talk about what you’ve lived through? What a great way to start a conversation. But I find it so shallow not to talk about the single defining issue of my life.”
In many ways, the narrative around HIV and AIDS is becoming more nuanced.
“Before it was strictly tragedy. It was a one-message narrative: they’re all going to die,” King said. “Now, what we have is those with HIV are segmented into the haves and the have-nots.”
Some people have homes and jobs and a support system that allows them to control their virus, instead of having the virus control them. Others are not so lucky.
“They don’t have a car sitting in the driveway,” King said. “They don’t have a driveway.”
Moreover, King says people living with HIV still face the same overarching stigma that was present in the 1980s and allowed the epidemic to reach disastrous levels.
“The science has progressed; social stigma has not,” he said. “If there are barriers between you and HIV treatment, you might as well be living in 1985. And you’re going to die like it too.”
Jesser resumed living once on the cocktail of drugs, but much of his former life was gone.
“I have no friends from those early days,” he said. “Nobody that I know survived.”
Pulled back from the brink of death, he started working as a real estate agent in Palm Springs, and got involved with the Desert AIDS Project, a nonprofit that was helping take care of those living with HIV. The organization asked him to speak at a fundraiser, and as he looked across the table a man caught his eye.
“God, he is so good looking,” Jesser thought to himself. But even with his medications, he figured he was living on borrowed time.
“There’s no way I was going to live another 10 years,” he said. “Either your HIV becomes immune to the cocktail or the cocktail becomes too toxic, or your liver would fail or your kidneys would fail. So I didn’t even think of having a relationship.”
But the man approached him and thanked him for his speech, before asking him out to dinner. They’ve been together for 18 years. A few years ago, they moved to Central Oregon, living first in Sisters and now in Bend. Jesser still struggles with health issues, a long-lasting reminder of his life with HIV, but he takes just two pills a day to control his virus. He’s found peace at home and through his connections with his children and grandchildren. It’s a future he couldn’t have conceived of 30 years ago.
“My life has been really wonderful,” Jesser said. “I mean, sure, my body’s kind of giving me a hard time, but overall, I love my life.” •
(Editor’s note: This story has been corrected. Quotes by Dr. Davey Smith, co-director of the San Diego Center for AIDS Research, who is quoted high in this story, were incorrectly attributed in subsequent references. The Bulletin regrets the error.)