It’s been more than 30 years since HIV/AIDS hit the country. It has killed more than half a million people in its path. Since the early ’80s, the Puget Sound region has become a hub for HIV/AIDS research, medical care, and education. Thanks to doctors around the globe — some of which hail from the Northwest — AIDS is no longer the unstoppable force it once was in the United States. And yet the fight is hardly over.
In 2015, more than 39,500 people were diagnosed with HIV, and more than 1 million in the United States are living with the disease. It continues to affect the world, the country, and the Eastside. Meet local researchers, doctors, and community members working tirelessly to improve the lives of those living with HIV/AIDS, and learn about the strides they are making.
THE EDUCATION ACTIVIST
Tackling Stigma and Education
By Joanna Kresge
Jodie Howerton was in shock, sitting inside a Northshore School District elementary school previewing an educational video entitled What is HIV? The 20-year-old program was to be shown to her daughter’s fifth-grade class later in the year.
“My mouth was just hanging open when I left. I just (thought), ‘What are they teaching them?’” she said. “This (information) is not right anymore.”
The other parents sitting in the room that night might not have noticed the problems with the video — some even might have been shown the same information in their own youth. But Howerton, a Woodinville mom of three, knew about HIV. It was a subject that hit close to home.
The same year, 2010, that she found herself watching that woefully outdated video, Howerton and her family had adopted Duzi, a 5-year-old boy with HIV from a foster home in South Africa. Like many HIV-infected children in South Africa, Duzi had contracted the virus in the womb, during birth, or via breast milk, and likely was placed in foster care by relatives after his biological mother died from AIDS.
“My mouth was just hanging open. What are they teaching them?”
“It happens all the time in the community that he is from,” Howerton said. “The stigma there is that the baby is going to die anyway. His mom died, she had this; he has this, he’s going to die. So, they give (the kids) away.”
There have been major advances in healthcare since the ’80s, when the AIDS epidemic began. These advances have made it possible for individuals with HIV to lead long, healthy lives with low or undetectable viral loads. However, gaining access to the necessary medication in places like South Africa is difficult.
“Had his birth mother had access to medication, his life could have turned out very differently,” Howerton said. “I mean, I think he’s got a pretty good life, but it’s just that grief that he’s got about how his birth mother died when she could have lived.”
When Howerton sat in that elementary classroom and watched the fear-based video about HIV/AIDS that perpetuated the stigma of the virus as a death sentence due to promiscuous behavior, she was appalled. Her son wasn’t like that. He was a healthy boy with a bright future. Howerton went on a hunt for a video to teach a new generation of youth about the current realities of HIV/AIDS.
Washington state’s AIDS Omnibus Act, enacted in 1988, requires public schools to teach students in fifth through 12th grades about HIV/AIDS each year. The act also gives parents the option to preview the material and opt their children out. The Seattle and King County Health Department’s fifth-grade Family Life and Sexual Health (FLASH) curriculum, which was updated in 2010, provides lesson plans that include a list of approved educational videos.
More than 220 of those videos were produced before the year 2000 and include titles like Too Close for Comfort (1990), In the Shadow of Love (1991), and River of Fire (1983). No videos produced after the year 2006 appear on the current list.
Howerton’s mission to find a video with updated information proved fruitless. There was nothing that conveyed the positive and informative message she wished to deliver.
“I think I assumed when I brought my son home (from South Africa) that stuff was up to date. I mean, this is the U.S.,” Howerton said.
To right the wrong, the determined mom consulted the state’s Office of Superintendent of Public Instruction, where she got the advice she needed to create her own material. It was then that her organization, Redefine Positive, was born.
Redefine Positive produces new HIV-related educational videos to combat stigma and educate kids, with the goal of reducing transmission of the virus. So far, Redefine Positive has produced a fifth-grade and a sixth-grade video and is currently raising funds with a goal of more age-appropriate videos for every class through 12th grade.
“It has not been easy,” Howerton said. “Obviously, I’ve worked my butt off on the project, but getting that started and getting people to agree to work on it was very easy, and I think that is because there is such a need (for these materials).”
The videos are free to download via YouTube and TeacherTube. Together the videos have been viewed more than 10,000 times, but there is no way to know how many schools in the state or even the country are actively using them.
Moreover, due to Washington’s status as a local control state, Laurie Dils, Sexual Health Education Program supervisor for OSPI, explains that her organization has no way of knowing whether schools are in compliance with the Omnibus Act.
“The law didn’t give us any kind of monitoring authority or compliance, so we basically support districts in meeting alignment with the law,” Dils said. “We support them with resources and we support them with professional development, but we don’t monitor or enforce anything.”
Instead, Washington school districts are left to continue using antiquated materials. Unless a well-informed parent like Howerton comes along to rock the boat.
“I think that is a gap in the legislation, to be perfectly honest,” Dils said. “I think it would be helpful if we did have a better sense of how many districts are actually providing the education they should be.”
With little control over schools, Dils and Howerton can only move forward and continue respectively developing educational curricula. And with that change come growing pains.
“I think a lot of the teachers were upset because they had been using (the outdated videos) for so long, and they thought they were fine. They just honestly didn’t know,” Howerton said.
Rebecca Cavanaugh, health and nursing services supervisor for Howerton’s own Northshore district, joined the school after the first Redefine Positive video had been implemented. She says during her time at Northshore, the videos have been helpful.
“What is really nice about these videos is that it is normalizing HIV/AIDS into this broader community and not making it so frightening by showing actual people. For example, the fifth-grade one (shows) a family where the mom is living with (HIV) and what that means for the family and how they are working through that,” she said.
But there have been other challenges. Howerton said she encountered some resistance working with the Seattle/King County Public Health Department during the development of her first two videos.
“My whole thing is stigma prevention. And oftentimes public health is very interested in prevention, but not necessarily combating stigma in a direct way,” she said. “I think they are worried that the stigma message is diluting the prevention message, and I totally disagree. I think that is where our stuff is really unique because it is prevention-minded and stigma-reducing at the same time.”
While Howerton focuses on educating youth, the Seattle/King County Public Health’s primary focus for HIV/AIDS education is on communities with the most at-risk individuals. Some 67 percent of individuals with HIV in King County are men who have sex with men, and most of those are initially affected when they are between the ages of 20 and 40. “We look at prevalent cases — cases that are living with HIV now that might have been diagnosed 20 or even almost 30 years ago — and we kind of compare it to people that have been diagnosed recently, and our prevention efforts tend to focus around the profile of people who have been diagnosed recently so that we can try to interrupt the transmission,” said HIV prevention planner Karen Hartfield of Seattle/King County Public Health.
But Howerton remains determined to tackle HIV/AIDS prevention from the other end of the spectrum. And that starts with kids. There’s a way to redefine what it means to be HIV-positive, and she says that way is full of hope.
“People are more apt to seek treatment once they become positive if there is less stigma,” she said. “I think we could crush stigma much better at a younger age.”
Linking Society to Science
By Margo Greenman
It’s easy to strike up a conversation with Michael Louella. His smile is warm and inviting, and his laugh — which bellows often — is contagious. This positive attitude is important because it keeps the HIV community he interacts with in high spirits.
Louella is the outreach coordinator for the University of Washington’s AIDS Clinical Trials Unit, which operates locally out of both Harborview Medical Center and Fred Hutchinson Cancer Research Center, and is part of a global network dedicated to conducting HIV-related research studies.
Though Louella isn’t a doctor or scientist, he plays a crucial role in the local fight against AIDS. He has seen the powerful effects of treatment restore a dying man’s health, which is one of the reasons he works tirelessly to connect HIV-positive and high-risk individuals with the prevention and treatment they need. He is a light in an often-dark space.
“Having HIV doesn’t mean you’re going to transmit it. If you are in treatment, you will be OK. You will not be that diseased pariah that no one wants to touch.”
A former English teacher, Louella came to the AIDS Clinical Trials Unit in 2000 from New Orleans. As an openly gay, HIV-negative man, Louella was a witness to the AIDS epidemic of the 1980s, before widespread prevention and treatment existed.
Upon arriving in Seattle, Louella’s first stop was Harborview. “The key to the apartment where I was going to be staying was upstairs (in the hospital) with a woman who worked at the AIDS Clinical Trials Unit,” Louella said. This was his first introduction to the AIDS Clinical Trials Unit. That same day, he learned the unit was looking to hire a receptionist.
Louella applied and two weeks later found himself sitting behind the front desk. Having moved to Seattle nearly on a whim, Louella said in hindsight he feels as though he was summoned to the city for a greater purpose.
“I like to joke that I was brought here simply because the great spirit was sending an opportunity and wanted to make sure there was going to be someone there when opportunity knocked,” he said.
This greater purpose became evident during Louella’s first few years working as the receptionist.
When Louella joined the AIDS Clinical Trials Unit, triple combination therapy, an effective highly active antiretroviral therapy treatment for HIV, was already available, but Louella said people were scared to take it. Some people believed it was the drugs that were killing people, not AIDS. This led to many HIV-positive people rejecting treatment, and the result was devastating.
“I got to see some individuals who were not on treatment who were basically dying in my lobby,” Louella said.
During the early 2000s, the AIDS Clinical Trials Unit led studies examining the effectiveness of antiretroviral therapy on HIV-positive individuals. When Louella saw firsthand the life-changing benefits these treatments offered, he said a light went on inside him.
“We were doing a study with people who were not on treatment,” Louella said. During this particular study, one of the participants, who happened to be very proud of his looks, was refusing treatment — and then his good looks started to go.
“I saw his hair turn gray. I saw him sort of waste away in the face. I saw him start to lose his coordination and become — before my eyes — an old man.”
Louella said the 30-something-year-old continued to refuse treatment until, finally, his hair started turning white. Louella believes the man’s vanity was his saving grace.
“It was when his hair went white that he decided to go on the medicine — and I got to see him return to life,” Louella said.
This, for Louella, was a turning point. He was ready to graduate from his status as a receptionist.
“I had never seen anything like it,” he said. “(When) I saw him return and become his own sassy self again, that’s when I really thought, ‘I need to know what’s happening behind those doors.’”
Today, as the outreach coordinator for the AIDS Clinical Trials Unit, Louella works closely with researchers and doctors to connect HIV-positive and high-risk HIV-negative individuals to resources, trials, preventative care, and treatment.
However, while advancements in medicine have made treating HIV easier and more effective, Louella said stigma still is one of the biggest hurdles surrounding HIV/AIDS today. It is what prevents HIV-positive people and individuals at high risk from accessing prevention and treatment. And he’s seen stigma in full force everywhere from pride parades to social media. High-risk individuals and HIV-positive people don’t want to broadcast their status, he said, which can push some people into the shadows.
“People don’t even realize when they’re stigmatizing,” Louella said. And it’s not just HIV-negative people perpetuating the stigma — it’s HIV-positive people, too. “One thing that’s been really hard in gay male circles has been the use of the word ‘clean’ to equal HIV-negative,” Louella said. “It’s one of the most stigmatizing things — and it’s starting to lessen, thankfully — but people will say, ‘Are you clean?’ as shorthand lingo online when texting or messaging on an app, meaning are you HIV-negative, and that’s just awful because what you’re saying is, what’s the opposite of clean? Dirty.”
By changing the way people talk about HIV/AIDS, Louella believes the stigma can end, making it easier for all high-risk and HIV-positive people to get access to preventative care and treatment. He says government and other public agencies, lawmakers, advocacy groups, and the public all need to work together to change the conversation. Locally, Louella said End AIDS Washington, a statewide initiative, is working hard to flip the script.
But there’s still a lot of work to do. Today, HIV-positive people whose viral loads are undetectable are considered noninfectious, but they can reach this status only if they get tested and stay on treatment.
“Whether you’re ever going to have HIV in your life or deal with it or not, I think everyone needs to know that having HIV doesn’t mean you’re going to transmit it,” Louella said. “If you are in treatment, you will be OK. You will not be that diseased pariah that no one wants to touch. In fact, that’s such a myth to begin with, but imagine if everyone knows that — even the … people who will never have to deal with HIV. If they learn that, I think that will change things.”
THE EASTSIDE DOCTOR
Past, Present, & Future
By Lauren Foster
Dr. Peter Hashisaki of Overlake Medical Center has been treating HIV patients on the Eastside since 1983. We sat down with the infectious-disease doctor to talk about his experience in the ’80s, how treatment has changed, and his hopes for a cure.
On AIDS in the ’80s: It was a little grim then because everybody died … everybody was always hopeful (about treatment), but whether it would actually happen, we never knew.
On treatment today: Obviously, in 30 years, it’s advanced dramatically. Now people with HIV, if they take their medications and are followed carefully and get all their routine vaccines, they’re going to live a normal life expectancy.
“The most common reason why people die now? … (they) say, ‘I felt so good … I just quit taking my medicine.’”
On Seattle having more HIV resources: We have different patient populations. On the Eastside, the people that I see have a job and a family. And most of them are married and have a very stable lifestyle … There’s lots more resources in downtown (Seattle) because they need more social services. If you don’t have a place to live, or you don’t have Medicare, or you don’t have insurance, getting your medicines, getting to your appointments, follow up, all those things are really tough.
On drug users: Early on (in the ’80s and ’90s), we saw a lot of people (on the Eastside) with HIV disease who were IV drug abusers, and I think there’s more of a population like that (now) in downtown (Seattle).
On diversity: (White, males) that’s probably the majority of my practice.
On stigma: (There’s) not nearly as much as there was. There might be, but it used to be, back in the ’80s and ’90s, if someone had HIV disease, they might have a hard time finding a place to live. There was definitely a lot of prejudice and fear. But I think society has come to realize that there really isn’t a need for that.
On current deaths: The most common reason why people die now, that I see here on the Eastside, is people say “I felt so good; I felt so normal, I just quit taking my medicine.” Which is sort of stunning. And then they come in, and they’re really sick and they die. And it’s like, why did you think that? That is the biggest problem that I see.
On HIV rates: The CDC (Centers for Disease Control and Prevention) in Atlanta, Georgia, recommends that if you have high-risk exposure, you should start taking preventative medication. So, that’s helped cut the rates (in the United States).
On a cure: Yeah, I think there’s going to be a cure. I don’t know if it will be in my lifetime; I hope it is. I mean, just the fact that they’ve come from 100 percent mortality to potentially zero mortality, to do something like that in 33 years is amazing in medicine. Do I think they’ll be able to go that far in the next 33 years? Yeah; I think it’s going to be possible.
Searching for a Vaccine
By Lauren Foster
In the 1980s, AIDS quickly became a fatal epidemic. As the disease spread, so did the fear, and those living with HIV/AIDS not only had to battle its effects — profound night sweats, painful sores, skin lesions — but also harsh stigma. They were often shunned by their families and kicked out of their homes. Some medical professionals refused to treat HIV patients. Dr. Larry Corey dedicated his career to saving them.
In the mid-1980s, Corey, a virologist, opened an HIV lab at the University of Washington. He had been tracking the virus, and knew it couldn’t be transmitted through the air. He’d hug his HIV patients. He’d shake their hands and wrap his arms around them. He wasn’t afraid.
“There’s a wonderful thing about being a physician. You get along with a person, and you discuss things that are not trivial in life. That’s really the great thing about medicine and frankly something I’ve always loved,” Corey said.
“I’m so positive about things I am positive because research brings hope and discovery.”
Corey, a Mercer Island resident who now works at Fred Hutchinson Cancer Research Center in Seattle, has devoted his time to battling AIDS with science. He played a leading role in proving that combination antiviral therapy could effectively extend the life expectancy of HIV patients and is currently working on a vaccine he hopes will one day eradicate the disease.
By 1990, AIDS had killed 121,250 people in the United States. At the time, Corey and a team of researchers were desperately searching for a treatment while pressure was mounting from the disease’s death toll and AIDS activists. He said during dire years, he stayed positive, inching closer and closer to a medical regimen that could help. Despite the puzzling and complicated science involved in combating HIV/AIDS, what continues to fuel this doctor is simple — hope.
The Early Years
Corey grew up in the suburbs of Detroit, raised by immigrant parents from Russia and Poland. He graduated from the University of Michigan with high distinction in 1967 and started studying cardiology at the university’s medical school. But, according to Fred Hutch’s news site, Hutch News, when his brother-in-law died of an infection related to chemotherapy for his Hodgkin’s lymphoma, Corey was devastated. His sister’s husband was like a brother to him. Not long after that, Corey shifted his focus to infectious diseases.
In 1975, he came to the University of Washington, where he researched sexually transmitted diseases, a field in which he would make a dramatic discovery. He tested the effects of acyclovir, the world’s first commonly used antiviral therapy, on the genital herpes virus. At the time, the experiment was controversial. Many of his colleagues speculated that antivirals would be too dangerous.
“When I was first in this field, people looked at me like, ‘You can’t ever make an antiviral safe enough for someone to take,’” he said.
But Corey’s mentor, Dr. Gertrude Elion, who invented acyclovir and later won the Nobel Prize for her accomplishments, encouraged him to keep trying.
“She taught me not to listen to those people and that (I) could do this,” he said.
Elion was right. By the early ’80s, Corey had demonstrated the effectiveness of the world’s first antiviral therapy on genital herpes. Not only did acyclovir change the lives of those living with the sexually transmitted disease; it also helped create a road map to treat cytomegalovirus, hepatitis B, hepatitis C, and, of course, HIV.
His work with antivirals pushed Corey into the medical spotlight. When the CDC published a report about a mysterious virus infecting several gay men, it didn’t take long for it to get his attention.
“(AIDS) walked into my world with the very first report in 1981. I was calmly in the kitchen reading the MMWR, the Morbidity and Mortality Weekly Report, that originally reported the (five) cases of these unusual infections,” he said.
After his breakthrough with genital herpes treatment, Corey needed a new project, and AIDS was shifting into an epidemic. Corey was on the case.
Corey was working in the HIV lab at the University of Washington, where he quickly learned that death would be an inevitable plague on his research. At the time, he was teaching medical students about HIV in addition to doing his own investigations. He wanted his class to know the virus outside of its scientific characteristics. He wanted them to see its effects on a human life.
“I wanted (students) to learn about the human aspect of AIDS. I was taking care of HIV-infected people and brought some of my patients in so that (students) would talk to them and learn about them and put this human face onto this disease. But for the first three or four classes, every person I brought in for one year never lived to the next year,” he said.
It was around that time that he started hugging his patients. He wasn’t afraid to show compassion in the face of death. But it wasn’t always easy.
“There was frustration on my part. You’re seeing 30-year-old men who are in the prime of their life die. So, OK. What can you do? You do what you can,” he said.
What he could do was treat patients with antibiotics and assist in making their lives as comfortable as possible until the inevitable end. By 1987, AIDS had claimed the lives of about 41,000 people in the United States.
That same year, the AIDS Clinical Trials Group — a collection of leading medical researchers trying to find a treatment for HIV/AIDS — formed, and Corey became chair of the executive committee. In the late ’80s, he was working 100-hour weeks as gay men in urban cities were dying in waves. Meanwhile, AIDS activists, many of whom were rapidly losing friends, were protesting the clinical trials group. They wanted inclusiveness from the researchers.
“Those were, sort of, tumultuous years between the AIDS activists and us working our fannies off. We went through all that … As much as one felt personally attacked about how could you work so hard and still not be, quote, appreciated, you could understand where (the AIDS activists) were coming from.”
The AIDS activist group ACT UP coined Corey and other research leaders in ACTG the “Gang of 5.” They organized protests at AIDS conferences and outside the National Institutes of Health (NIH). According to Hutch News, activists formed a mock trial in San Francisco and put the researchers on the stand for ignoring the anger of the gay community mourning the loss of loved ones.
The heated protests led to more community outreach, now a cornerstone of HIV/AIDS treatment. But at the time, the hostile demonstrations and the mounting pressure tested Corey’s will to focus.
“Hope springs eternal. Sometimes my wife just calls me a Pollyanna. I’m so positive about things. But I am positive because research brings hope and discovery,” he said.
Eventually, the research hit a breakthrough. By the mid-’90s, the clinical trials group demonstrated that combination antiviral therapy could extend the life of an HIV-infected person from a matter of months to decades.
“There’s no more remarkable achievement in all of medicine in a 30-year period of time, to take a 100 percent fatal disease into now, if you take your medicines every day, you’re going to live 50 years,” said Corey.
Corey is currently searching for his final discovery — an HIV vaccine. But eliminating the virus has proved to be a laborious and demanding task.
“I didn’t think it would be as hard as it has been. It’s been a real slog,” he said.
However, his HIV Vaccine Trials Network at Fred Hutch is making progress. In 2009, another study out of Thailand showed that a vaccine combination could prevent about 32 percent of new infections. The network is using that information and conducting its own trial in South Africa.
“We’re taking some major shots with ideas that we’re cautiously optimistic about,” Corey said.
While many HIV-infected people can live normal lives with access to medication, eradicating AIDS would improve the state of the world. In 2015, there were roughly 36.7 million people living with HIV/AIDS across the globe.
“We can’t treat ourselves out of this epidemic,” Corey said. “(There are) 2 million new infections a year. Even in our own country, we’re talking about 45,000 new infections every year. That’s not trivial.”
In underdeveloped countries, where many HIV-positive people don’t have access to treatment, a vaccine would alter the landscape.
“You go to KwaZulu-Natal, up and around the Durban area, 45 percent of all pregnant women are HIV positive. Can you actually imagine that? Can you actually even conceive that? One out of two is HIV infected,” he said.
Corey is hopeful. He thinks a vaccine is possible, even if he’s not the one to discover it.
“I’m far enough in my career that, if we fail, we fail. Someone has to fail; someone has to take it on,” he said.
Ask Corey whether he thinks of himself as a hero, and he’ll quickly shake his head.
“The heroes are the people who actually participate in medical research. The heroes are the people who have the disease and live through the illness. I love what I do because of the diversity of what we do. It’s a real privilege to do research,” he said.
At 69, Corey takes a few more vacations than he did in the ’80s. He said he’s held a lot of titles in his life, but the one he’s most proud of is “grandpa.”
Corey doesn’t believe in spontaneous miracles, but he does trust the brightness of humankind, and the medical breakthroughs one can drive when one remains hopeful.
“Miracles happen in the lab,” he said.
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By Karen Miller