When the World AIDS Day documentary, “Countdown to Zero,” aired on HBO Dec. 1, Rod Fichter knew he didn’t want to see it alone. It was not just that, as an HIV-positive man for three decades, he’d lived the history of the pandemic. He was also featured in the show.
So he invited eight close friends and neighbors to his West Seattle house to watch on his wide-screen TV.
“Kleenexes were needed,” he said.
The VICE special report painted a clear picture both of a scourge that is very much still with us and the progress being made toward ending it by researchers at Fred Hutchinson Cancer Research Center and elsewhere who are working on a preventive HIV vaccine and a potential cure. (The program can be streamed here until Dec. 26 and will be shown tonight at a private screening at Fred Hutch.) Fichter, 64, volunteers in a long-running Hutch study on people who are infected with HIV but whose bodies are able to control the virus without medication and prevent it from progressing to AIDS.
His partner of 30 years, Gary Johnson, was not so lucky. Both men tested positive for HIV in 1986 while living in Oakland, California. Shortly after moving to Seattle in 1991, Johnson developed AIDS-related dementia. A cocktail of antiretroviral drugs reversed the condition, but he died in 2011 at age 49 of a heart attack brought on, his doctor said, by AIDS.
Fichter entered the research study years ago after his and Johnson’s doctor suggested it, hoping that knowledge about how his body controlled the virus could contribute to a vaccine or treatment.
“If I could have saved Gary, that would have been the best thing,” he says in the documentary, blinking back tears.
Fichter’s story of surviving while his partner died of AIDS is the program’s emotional centerpiece. It brought not just viewers but the filmmakers to tears.
Multiply his story by 100 and you will begin to understand the exceptional volunteers who are part of the Hutch study underway since 1997 at the Seattle Vaccine Clinical Trials Unit clinic on First Hill.
“HIV is an exquisitely smart virus,” said nurse practitioner Julie Czartoski, who provides the participants’ clinical care. “It doesn’t kill people right away, like Ebola. In fact, HIV doesn’t work by killing anybody directly. It decimates the immune system so something else can.”
At least, that’s how HIV works in more than 95 percent of people infected. The virus mostly targets a type of T cell involved in initiating an immune response, inserting itself directly into the host cell’s genome and hijacking it. Without combination antiretroviral treatment, which came into use in 1996, infection leads to a devastated immune system, or AIDS, within three to 10 years. And AIDS leads to death.
But for fewer than 5 percent of those infected, HIV doesn’t progress. Dubbed long-term nonprogressors, they are able to maintain low viral loads – measured by the amount of HIV in a blood sample – and near normal T cell counts without medication. An even smaller subset of this group, called elite controllers, has undetectable viral loads and normal T cell counts without treatment.
These two groups of super survivors are the focus of intense interest in the Fred Hutch study and in studies of similar groups throughout the country.
“Our goal has been to try to understand how they are controlling,” said Dr. Julie McElrath, director of the Hutch’s Vaccine and Infectious Disease Division and the Hutch study’s principal investigator. “Part of the problem in getting definitive answers is that there are multiple reasons.”
Fichter learned that he has one copy of a mutant gene that confers natural protection to HIV. Other studies have found that having both copies of the mutation can protect people from infection. The one person known to have been cured of HIV, Timothy Ray Brown, received a bone marrow transplant to treat leukemia from a donor with two copies of the protective mutation.
But not all nonprogressors and controllers carry the mutation. Researchers also are looking at other genetic differences in both host and virus as well as how immune responses of nonprogressors differ from others with HIV. What is learned may inform the design of a vaccine, new treatments or even a cure. For example, a clinical trial scheduled to begin next spring will test whether a manufactured antibody based on an antibody discovered in the blood of a long-term nonprogressor can confer protection against HIV infection.
Unraveling the mysteries underlying this rare response to HIV has required remarkable dedication on the part of both volunteers and the staff of the Vaccine Clinical Trials Unit. Of 100 total volunteers since the study began, about 80 remain active and have participated for a median of 11 years. Early on, they submitted to rectal biopsies, semen samples and vaginal swabs. Now they continue to show up about every two months, year in and year out, to contribute vials of blood.
McElrath finds ways to keep the study going even in lean funding years.
“I don’t know any other group that’s been followed so often for so long,” Czartoski said. “To lose this group of people would be devastating scientifically.”
Belonging to a group so rare can be isolating. Because of the study’s confidentiality requirements, study participants don’t even know each other. Some aren’t public about their HIV status, either because of lingering stigma or fear that people with HIV who are on medication may resent them. In addition to drawing blood and discussing test results, Czartoski has also become counselor and friend.
“They have HIV, but they don’t have HIV, not like everybody else,” she said. “[Many of them] have outlived everybody.” Participating in the study is “a way to try and give back all the things that were taken from them.”
Around 2010, McElrath and Czartoski started seeing a change in a few of the participants. Whether because of aging or the sheer length of time they’d been infected, after years of stability, their viral loads started rising and T cell counts dropped. It felt, Czartoski said, “like a switch flipped.”
“It’s harder for me to tell someone in this group that they have to go on meds than to tell people they have HIV [in the first place],” she said. “They were special. This was their thing. They feel like they’ve failed.”
Those few participants also feared that they would have to drop out of the study. But it was expanded to look at how nonprogressors do on medication. Early signs are that they do well.
Czartoski started working for the study 11 years ago, because of her interest in infectious diseases and HIV.
“Now I do it for them,” she said. “To be able to tell them one day ‘We can get rid of your HIV’ would be amazing. I would work every hour. These people are amazing.”
Rod Fichter shares more of his experience here. For more participants' stories, read on or click the links below:
Karen Pancheau's son, Tyler, was 14 when he developed a rash so severe he was admitted to the hospital. A week after his discharge, the two went to Tyler’s pediatrician’s office in their hometown of Portland to get test results. It was Oct. 1, 1996, and Pancheau, now 68, still remembers the blue sky outside the doctor’s window, a hue seen only in a Northwest fall. When she heard that Tyler tested positive for HIV, everything blurred as though underwater.
Further tests and records searches uncovered the origin of the infection. In 1982, a month before giving birth, Pancheau hemorrhaged and required a blood transfusion. This was before tests for AIDS, before it was even known to be caused by a virus. The blood she received was infected. Tyler was born in an emergency C-section a month later. Pancheau breast-fed him for more than a year.
In the years that followed, Pancheau didn’t have any symptoms. She still doesn’t. Tyler did. His lymph nodes would swell hugely at the slightest cold. When he was younger, she’d had him tested for infections and even cancer, but no one had thought to look for HIV.
Tyler immediately told his friends about testing positive, despite Pancheau’s and her ex-husband’s fears that he would be shunned. He told her, “Mom, Kyle [his older brother] and I have chosen our friends very well.” He was right. His friends – and their parents – supported him unconditionally.
But Tyler resisted taking medication. Antiretroviral drugs were still in their infancy. Dozens of pills had to be taken at odd hours and under varying conditions – some with food, some on an empty stomach. He experienced extreme fatigue and other side effects. Skipping the meds led to painful shingles infections and life-threatening pneumonias. He went off, then on, then off again.
Pancheau cried and apologized over and over until Tyler got so ticked off at her that he got in her face about it. “It’s not your fault,” he told her. “You didn’t know. Nobody knew.”
“It wasn’t until he said those things to me that I was able to let go,” Pancheau said in a recent phone interview. “But even now there are very few days that I don’t feel a tiny seed of guilt.”
From an early age, Tyler had been fascinated by military history and exhibited a rare talent for getting veterans – of World War II, Korea, Vietnam – to open up and tell stories. His diagnosis dashed his dreams of military service.
But he was so uncomplaining that his parents didn’t realize he was spiraling down. In 2005, he drove to the Oregon coast and under a slate gray November sky, shot himself. He was 23.
After his death, Pancheau, her ex-husband and Kyle got letters from all over the world – from military history buffs and others Tyler knew through the online groups – expressing their sorrow.
“There’s not a day goes by that I don’t think about him or miss him or talk to him,” she said of her son, now gone 10 years. “I was given a gift. I was given the loan of this child. This was an old soul who was only on this planet for 23 years. But he impacted other people’s lives far more intensely than any work I’ve ever done.”
Following Tyler’s example, Pancheau had long been public about her diagnosis as part of a “moral obligation to try to destigmatize this whole thing.” The July after he died, around his birthday, she found a new way to take action. She heard on NPR about a study of long-time nonprogressors. She joined the Fred Hutch study.
More than 33 years after being infected, she still has no symptoms. Researchers have told her that she has “the [gene] alleles that are very interesting,” but she doesn’t personally feel a need to understand what that means.
“It’s all Greek to me, and I don’t really care,” she said. “Whatever they can do with what I can give, I’m happy to give it. If it can save one parent from going through what I went through with my son, why not?”
A flight attendant, Gary – not his real name – lived in San Francisco “during the wildest years, before the outbreak.” When he tested positive in 1987, many of his friends were already dying or dead. The name he asked to be used for this story is the name of one of his dearest friends, who died on Valentine’s Day 1988.
“One by one, everybody around me was disappearing,” he said. “I would get the weekly Bay Area newspaper to read the obituaries. People would just sit quietly and flip through them. You knew everybody there.”
Gary waited to die, but he didn’t even get sick. He felt lucky. And guilty.
After moving to Seattle, Gary joined a Fred Hutch vaccine trial early on. About three years into that study, he was told, “You seem to be different.” That’s when he first heard the term long-term nonprogressor.
By then, the friends who were still alive began taking antiretroviral medication. He didn’t need to.
“You’re part of the group, but you’re not part of the group,” he said. “Everybody’s first question was always: 'What medication are you on?’ When you said none, they’d say, 'You’re crazy.’”
Two years ago, still without symptoms, Gary went on medication after U.S. health officials advised that everyone with HIV start therapy immediately rather than wait until they hit certain viral load and T cell levels. Many long-term nonprogressors have not wanted to do so.
For Gary, deciding to go on antiretroviral therapy was “a tossup.” The first drug he tried made him feel “goofy,” but he has had no side effects after switching to another drug.
Now 65, he only recently told his brother and sister – 10 and eight years older than he is – that he is HIV positive. He did so because his brother’s son took him to the hospital for knee surgery and overheard a discussion of HIV. Not wanting his nephew to feel burdened with concealing the information, Gary called his brother and “blurted everything out.” His brother was supportive – and also finally understood why Gary had been so unusually attentive to their mother for the last 25 years, until she died last October.
“I thought I wasn’t going to be around long,” Gary said, “and I wanted her to have good memories.”
He still doesn’t see the need for other people to know.
“There’s nothing to be ashamed of or to hide,” he said. “But there is a stigma. I’m more comfortable keeping it private.”
The one place he is open about it is with the study staff at the clinic, where he’s gone at least four times a year since the study began.
Traveling so much for work, the clinic made him feel connected to Seattle – to a home.
In addition, “I knew it was good research,” he said. “And then I became very fond of the crew there at the unit. Julie [Czartoski] has practically been my bedside psychologist.”
In the fall of 2013, the staff held the first and only public meeting of the entire study group, which hadn’t been done before because of confidentiality limitations. Gary was surprised at how many other nonprogressors there were, and also at the group’s diversity – “not just white guys like myself.” He was also impressed by the scientists who spoke, whom he described as “the top people in the field.”
“They wanted to thank us and present findings,” Gary said. “We are getting close to things like gene splicing, to something that will lead to control or elimination of the virus. It makes you feel special.”
When actor Charlie Sheen announced last month that he is HIV positive, Miss Bee saw him on TV and said, “He looks like a suicidal time bomb. Like me.”
When she found out she was HIV positive 12 years ago, she wanted to kill herself. Her two boys and her faith kept her going.
“I live off of faith,” she said. “God has a plan for me, or I wouldn’t be here now.”
African American women, like Miss Bee, as she asked to be called for this story, are 20 times more likely than white women to contract HIV, mostly through heterosexual contact. Overall, African Americans, though only 12 percent of the population, account for an estimated 44 percent of new infections. Just under a third of these are in women.
Miss Bee got tested after a man she’d been seeing told her – too late – that he was infected. “Men carry it because they’ve been in the prison system,” she said. Others also see high incarceration rates as a possible explanation for the disparity in infections, along with poverty, lack of healthcare access and lingering HIV stigma.
For the first eight years, Miss Bee did not tell her mother, brother, aunts or cousins about testing positive, fearing their judgment. Even now, she prefers to keep her HIV status private. But about five years ago, she was referred to the Fred Hutch long-term nonprogressors study because of her low viral load and high T cell count. There, she was able to open up.
“Julie [Czartoski] is very caring and understanding,” said Miss Bee. “She taught me to read my chart and understand my viral load.”
Now 53, Miss Bee finds herself struggling again – this time to accept that for the first time she’s had to go on antiretroviral medication because her viral load went up.
“They say that once you take meds, you can’t get off,” she said. “You watch me. I want to be that person who gets off.”
For now, she’s trying to find the right combination of pills to work without side effects. The first drug she tried left her feeling “like a zombie.” The second works better, though it still causes excruciating headaches.
“I feel so fragile now. Thin. Lost,” she said one recent day at Harborview’s Madison Clinic, where she’d gone to pick up her pills.
Swallowed by her Seahawks watch cap and sweatshirt, she said she’d lost 20 pounds and felt like she’d been hit by a truck. But she was determined to keep fighting.
“I ain’t going nowhere,” she said. “I ain’t giving up.”
In 1982, when he was 11, the boy from Illinois came to Fred Hutch for a bone marrow transplant to cure chronic myelogenous leukemia, a blood cancer that is especially rare in children. A year later, the leukemia returned, and in 1984 he had a second transplant. This one was particularly grueling, landing him on life support for 10 days, he recalled in a recent interview on the Hutch campus.
Fast forward another two years, and there was no sign of cancer when he came to the Hutch for his annual checkup. But his doctors had begun screening all patients for the virus that causes AIDS, using a test licensed only the year before.
“The odds are nobody has it,” they told him.
He tested positive. He was 15 years old.
The infection was traced to a blood transfusion around the time of the first transplant – before HIV had even been identified as the cause of AIDS, much less a test developed to detect it.
Now 45 and living in Seattle, S. – as we will call him – prefers not to be identified by name so that his brothers’ and his wife’s extended families in Illinois won’t have to deal with “people who don’t understand HIV, who are a little close-minded.”
“If their friends have issues with it, I don’t want to interrupt their lives,” he said.
He knows about interrupted lives. In 1986, an AIDS diagnosis was essentially a death sentence.
“The cancer wasn’t even a thought anymore,” he said. “Instead, it was, ‘When is this time bomb going to go off?’”
It also meant fear and stigma. Take the time he was 17 and went to a dermatologist, only to be asked to leave the office after the doctor read in his medical records that he had HIV.
Or the time he cut his hand at his job at a gas station. Not wanting to expose his co-workers, who didn’t know about his HIV, he used pliers to pull the glass out of his hand until he got to a hospital. When he told the emergency room staff that he was HIV positive, he was “whisked to a secret back room.”
His biggest fear was that he would inadvertently infect others. He was afraid to even shake hands. “Everything was so unsure back then,” he said.
His father left the family two weeks after S.’s second transplant and did not stay in contact. But the rest of his family rallied. His mother went back to school and became an oncology nurse. His two brothers – the younger one had donated the blood marrow for the transplant, the older, platelets – were concerned and protective.
Surviving cancer – and two bone marrow transplants – helped S. bear his new diagnosis. Despite the aftereffects of his cancer treatments – short-term memory loss, daily headaches – he graduated from college and, for a while, traded stocks and bonds for the Chicago Board of Trade. But Seattle pulled him.
“There was kind of a safe zone here,” he said. “I don’t know if it’s because it was where I was cured of cancer or the openness and understanding about HIV.” He stayed with friends with his doctors and nurses at the Hutch. They would ask about his HIV status and note his lack of symptoms. When one of them asked if he wanted to be part of the HIV long-term nonprogressor study, he agreed immediately.
“A lot of [early bone marrow transplants] were trial and error,” he said. “I was with a lot of people, all different ages, who died. It is hard figuring out why I’m still here. Through my [cancer] treatment and through this, the end-all purpose was, if you can learn more, go for it. I’m OK being a guinea pig.”
His viral loads remain undetectable. His biggest fear came four years ago when he decided to undergo then-arduous treatment for hepatitis C, which he also contracted from a transfusion before there were tests. He was afraid of somehow upsetting whatever was keeping the HIV infection at bay. The beast stayed caged.
He said that researchers have hypothesized that the transplant – or possibly the intense radiation and chemotherapy that accompanied it – may have halted the progression of HIV, but it’s still something of a mystery.
“If at some point, in some way, it can help people, whatever’s inside of me, then great, let’s figure it out,” he said. “If they can identify from my blood what stopped it, I’m fine with giving a few tubes of blood.”
He is not bitter about having contracted HIV.
“The way I look at it is, without entering into this [transplant], I would have been dead of cancer a long time ago,” he said. “The person who donated the blood, they weren’t purposely or maliciously doing it. I get bitter and angry about things, but not about my health. I’ve been on borrowed time since ’82. I’m not going to let HIV get in the way of my life. It’s not going to win either.”
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Mary Engel is a former staff writer at Fred Hutchinson Cancer Research Center. Previously, she covered medicine and health policy for the Los Angeles Times, where she was part of a team that won a Pulitzer Prize for Public Service. She was also a fellow at the Knight Science Journalism Program at MIT. Follow her on Twitter @Engel140.