Two years ago, Susan McCreedy stood before a small crowd at the World AIDS Day event in Bend, addressing those who had gathered to mark the 30th anniversary of the deadly disease.
“I’m so sad that year after year, I’m standing up here as a proxy for people living with HIV in this community,” McCreedy, the HIV program coordinator for Deschutes County for the past 13 years, lamented. “Because no one has felt comfortable — and I would never ask them — to speak publicly.”
Then to her surprise, a man rose from his seat.
“I’m positive and I’m happy to speak,” he said, and he approached the podium.
Zachary Richard, now 36, had moved to Central Oregon only five months earlier. He had been diagnosed with HIV in 2000 while living in San Francisco, where he felt a great deal of comfort and support from a community that had dealt with the epidemic longer than any other.
But in Bend, for the first time, Richard felt isolated and alone. If there were others with HIV in the area, they simply weren’t ready to talk about it. It would take an outsider, somebody who learned to be comfortable talking about his condition elsewhere.
It was only that morning that he learned there would be an AIDS Day event in Bend.
“If the community is going to bother to do this, then I need to be part of that,” he recalls thinking.
At the podium, Richard spoke about living with HIV and the terrible toll of the AIDS epidemic. He expressed how he wanted people to talk about HIV, educate the public and help support those affected.
“It was an opportunity to be a voice for others who couldn’t do that,” he said. “It was also an opportunity for me to let others know they weren’t alone.”
As she listened to him talk, McCreedy thought to herself, “Wow, 10 years into it, finally things are changing.”
In fact, there has been no group of patients whose fate has changed as dramatically over the past three decades as that of individuals infected with HIV.
It has been transformed from a nearly certain death sentence to a chronic condition that can often be managed with just a single daily pill. Yet for all those scientific and medical gains, HIV experts say we’ve made much less progress on the social conditions that continue to drive the epidemic. There remains a deep-rooted stigma associated with HIV that has stymied attempts to make further headway against the disease.
“AIDS has devolved into the swamp of intractable problems of poverty and addiction and racism and homelessness and mental illness, that are all kind of intertwined and linked. To deal with any of those, we need to be addressing all of those things in a holistic manner,” said Sean Strub, an HIV activist and editor of POZ, a magazine for people affected by HIV. “We’re never going to treat our way out of this epidemic. You can’t do it.”
Moreover, the medical advances seem to have distracted the public at large from the tenacity of the epidemic, overshadowing the social drivers of HIV. While the overall rates of new infections in the U.S. have plateaued, a closer look at the data reveals some disturbing trends among its various subgroups and components.
The rates of transmission among men who have sex with men, and particularly young gay men, have risen dramatically over the past several years. Among gay and bisexual men, there was a 12 percent increase in the number of new infections from 2008 to 2010, even as infection rates for heterosexual men and women dropped.
The number of new infections among males age 13 to 24 having sex with males increased 22 percent, from 7,200 infections in 2008 to 8,800 in 2010. And young black males accounted for 55 percent of those infections. Much of the progress made with prevention and education from the height of the epidemic may be slipping away.
“The bottom line is every month 1,000 youth are becoming infected with HIV,” said Dr. Tom Frieden, director of the Centers for Disease Control and Prevention. “Given everything we know about HIV and how to prevent it after more than 30 years of fighting the disease, it’s just unacceptable that young people are becoming infected at such high rates.”
Research suggests that at the current rate of infection, about half of college-age gay men today will have HIV by the time they’re 50, and half of today’s college-age gay men of color will have HIV by the time they’re 35.
“These are astonishing statistics, and it is always risky projecting numbers way out into the future, but in terms of (infection) rates over that kind of time frame, it’s never looked this bad since we’ve been measuring it.” Strub said.
Those same trends are in play locally. In 2011, for example, Deschutes County public health officials identified a cluster of five HIV cases among young gay men. All were under the age of 28, and health officials were able to connect the cases, tracking the spread of the infection through a mostly closeted gay community in the region.
For McCreedy, every single new infection seems like a failure of the system. To have five new infections occur so closely together was almost unthinkable.
“What? You got infected? How did you miss this?” she recalls thinking.
Both nationally and locally the answer is complex. Many believe that young gay men no longer fear AIDS the way the previous generation of gay men did. In part, that’s because individuals who have tested positive and are taking antiretroviral medications can reduce the amount of virus in their bodies to undetectable levels, which can nearly eliminate the risk of transmission. But the unintended side effect of effective treatment is that many men may be becoming less diligent about protecting themselves.
“There is a myth that AIDS is an old gay guy’s disease, and I’m not going to get it,” McCreedy said. “And then there’s medicines if I get it, so what’s the big deal?”
Ads for HIV drugs in gay magazines feature healthy, vibrant men carrying kayaks or riding bikes, enjoying full and active lives. Newspaper articles focus on the breakthroughs of medicine or the prospects for a vaccine. There’s even talk of a cure. It’s a far cry from the days when the nation feared a “gay plague.”
“In recent years we have seen a decline in the sense of urgency around HIV. The headlines have disappeared, and complicated issues for many men have been oversimplified. But the threat is no less real,” said Dr. Jonathan Mermin, director of the National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention at the CDC. “HIV is again on the rise in gay and bisexual men.”
Moreover, the Deschutes County cluster appeared to brush off the odds and the consequences of contracting HIV.
“There’s a lot of denial around it. ‘My partner has it but I don’t, and I love that person, so who cares?,’” McCreedy said. “Drive-related behaviors like eating, smoking, sex — things that are human drives — they’re not just in your brain, they’re in your body, they’re instincts. It’s very hard to mediate those.”
Many gay men, she explained, take a “don’t ask, don’t tell” approach to disclosure. Uninfected individuals may assume their partners will tell them if they are positive, and so don’t ask. HIV-positive individuals, on the other hand, may believe that their partners already assume they are HIV-positive, and so don’t tell.
“I tell them, if you’re having unprotected sex with other gay men in this community, I’m very concerned because there’s a high positivity rate and there’s a low disclosure rate,” McCreedy said.
Richard, who now does HIV outreach as a volunteer with the Deschutes County Department of Health, said it often just comes down to young men making poor choices, whether under the influence of drugs or alcohol or out of desperation.
“Some of these young folks are working in the sex trade for their housing or food or shelter. Sometimes they’re not able to say, ‘Yes, you have to put on a condom.’ Otherwise, they’re going to be sleeping out on the street,” he said. “I think that folks don’t realize that that’s in every city. That happens here.”
Carl Siciliano, who founded the Ali Forney Center for homeless lesbian, gay, bisexual and transgender youth in New York City, has called adolescents and young men thrown out of their homes for being gay “ground zero” for HIV risk. Young gay men are being encouraged to come out, and then find their families and their communities are not ready to support them when they do.
“The experience of being driven from your home and told that being gay makes you unworthy of being loved is a devastating experience. Compound it with hundreds of thousands of kids out on the street trying to find beds, they get the message from larger society that they don’t matter. These kids really struggle with hopelessness,” he said during a CDC roundtable on HIV. “If we find homes for these kids, we will watch these HIV numbers go way down.”
Prevention and management
Health officials now refer to a concept known as the care cascade to measure the effectiveness of HIV prevention and management. The cascade tracks individuals on the progression from testing and diagnosis to treatment and suppression of the virus.
On a national level, for example, for every 100 individuals living with HIV in the U.S., it is estimated that 80 are aware of their status, 62 have been linked to HIV care, 41 stay in care, 36 get antiretrorival therapy and 28 are able to adhere to their treatment and achieve undetectable viral loads. That means nearly three out of every four people living with HIV aren’t able to successfully get the disease under control.
Dr. Sean Schafer, medical director for the HIV program at the Oregon Public Health Division, said in Oregon the most recent estimate shows more than 80 percent of people who know they are HIV-positive have undetectable viral loads, more than twice the national average.
“The vast majority of them are in care and are getting care that’s sufficient to suppress their levels to almost unmeasurable,” he said.
As long as they continue to take their medications, they can keep the virus from multiplying, keep immune systems intact and keep from infecting others.
Schafer attributes that success mainly to a decision state officials made 10 years ago. While other states took federal dollars provided through the Ryan White HIV/AIDS program to pay for expensive HIV medications, Oregon was one of the first states to use the funds to purchase health insurance for uninsured HIV patients, and to help with premiums and copays for those who had coverage.
“That practice is relatively widespread now across the country, but Oregon was one of the innovators,” Shafer said. “So as a consequence, while a lot of states had waiting lists of people who wanted their drugs paid for, Oregon’s never had a waiting list.”
With more HIV individuals insured, there are fewer gaps in coverage and more individuals are able to stick with their treatment. But the implementation of the Affordable Care Act has thrown much of that stability into chaos. Many HIV-positive individuals were concerned about possible disruptions in care, as they are shifted to private insurance or new plans.
Nonetheless, funding for HIV care is stressed. The Ryan White dollars are never enough, McCreedy said, particularly as patients are living longer. Recently federal funding has been reallocated to shift resources toward states with higher numbers of HIV infections. While undoubtedly the need is great in those states, it also penalizes the states that have been effective in preventing new HIV infections.
“That’s catch-22,” McCreedy said. “The better you do, the less money you get.”
Funding for needle exchange programs, which have been shown to reduce HIV transmission rates, has been cut as well. Deschutes County’s needle exchange program is limping along, relying solely on donated needles.
Meanwhile, prevention funding isn’t being targeted toward high-risk groups. Strub said only about 5 percent of HIV prevention funding nationally is aimed specifically at gay men, who account for two-thirds of new infections. And federal funding for HIV prevention and treatment is largely centralized in a few programs with strict guidelines. That limits the ability of local community organizations to tailor messages and outreach.
Public health officials are now trying to affect each step of the care cascade to try to minimize the drop-off. CDC has long had a recommendation that people at higher risk for HIV get tested annually, and in 2006, recommended routine testing for all individuals. That effort got a boost last year, when the U.S. Preventive Health Services Task Force recommended that everyone 15 to 65 be tested for HIV at least once. Oregon still has a long way to go, as health officials estimate that only 43 percent of Oregonians in that age group have ever been tested.
In 2011, Oregon legislators passed a law allowing doctors to order HIV testing without going through the informed consent process, which required doctors to discuss the procedures, risks and alternatives. Now doctors can order an HIV test the same way they would a cholesterol or blood sugar test.
“People are a bit surprised, but I explain it, this is routine. It’s covered by your health insurance. It’s recommended,” said Dr. Laurie D’Avignon, an HIV specialist at Bend Memorial Clinic. “I just don’t think it’s become common practice, especially with older populations.”
Universal testing could not only identify more of the 20 percent of HIV-positive individuals who don’t know they are infected, it could also help to remove some of the stigma of HIV.
“We’re trying to get away from that, ‘I’m not gay, I don’t use intravenous drugs, I don’t need testing,’” said Michael Anderson-Nathe of the Cascade AIDS Project, a Portland-based HIV advocacy and support group. “There are a lot of people at risk outside of those factors.”
Moreover, researchers have discovered that treating HIV is one of the best ways to prevent HIV infection. In 2011, a National Institutes of Health study of couples of mixed HIV status found that when the infected individual was treated with antiretroviral therapy immediately, rather than waiting for T-cell counts to drop or AIDS symptoms to appear, infection rates dropped by 96 percent.
“If you can get people living with HIV to know their status, and linked into HIV-specific care and onto medication, and if they adhere to those medications, you can lower the risk of ongoing transmission by 96 percent,” Anderson-Nathe said. “Absent a cure or a vaccine, the best way we’re going to end HIV is getting everybody who’s living with HIV on treatment.”
That study has also contributed to a shift in clinical practice as doctors no longer wait for signs that a person’s immune system has weakened. Those who test positive are now generally offered antiretroviral medications immediately.
Universal testing might also help identify earlier a group that has become known as late testers. About 40 percent of individuals with HIV in Oregon are diagnosed within 12 months of progressing to full-blown AIDS, with viral counts through the roof and T-cells virtually nonexistent.
Those cases are harder to treat but still have good outcomes with today’s antiretroviral medications. But late testers have also lived longer with their infection, increasing the chance they’ve passed it on to someone else.
Transmission, stigma and paradox
Prevention efforts have driven down the annual rate of new infections from a peak of 130,000 in the 1980s, but haven’t been able to put a dent in the 50,000 new HIV infections a year in the U.S. over the past decade. That casts doubt on whether the U.S. will meet the Obama administration’s stated goal of getting down to a level of 38,000 new infections by 2015.
Oregon sees about 250 to 270 new cases each year, contributing to the estimated 6,000 to 7,000 people living with HIV in the state. Of those, about 1,000 don’t know their status. An estimated 200 to 300 people are living with HIV in Central Oregon, although about a fifth of those do not know it.
“Those people who don’t know they’re infected are unwittingly transmitting 60 to 70 percent of those new infections every year,” said Schafer.
CDC estimates that for every 100 persons who learn they’re infected with HIV, another eight transmissions would be prevented through HIV treatment and risk-reduction behaviors.
Now public health officials, who for years worked diligently to broaden the scope of HIV prevention efforts beyond gay men, find themselves refocusing on that high-risk group, trying to regain the ground lost over the past decade.
In November, CDC reported a nearly 20 percent increase in the number of men reporting unprotected sex with men from 2005 to 2011, from 48 percent in 2005 to 57 percent in 2011. Unprotected sex was twice as likely among those who didn’t know their HIV status.
Officials suggested some of those men having unprotected sex might be trying to limit their risk by serosorting, or having sex only with men who share the same HIV status. The percentage of men reporting unprotected sex with someone of discordant status was unchanged from 2005.
But serosorting is still considered risky because some partners may not know or disclose their status. And even individuals who are already infected with HIV face risks from unprotected sex.
“That too is not risk-free,” BMC physician D’Avignon warned. “There’s a risk of acquiring other sexually transmitted diseases. There’s a risk of acquiring a new drug-resistant strain of HIV.”
An estimated 10 percent of HIV infections involve strains that are resistant to one or more antiretroviral medications, much like bacteria can become resistant to antibiotics. Schafer explained that HIV makes a lot of mistakes when it replicates.
“That turns out to be an advantage for HIV, because some of those mistakes are useful,” he said. “So if I don’t take my medicine and I only have a little bit around when my virus is replicating, from time to time it makes a mistake that gives it resistance to the drug I’m supposed to be taking.”
Clinicians treat HIV with a cocktail of antiretroviral drugs, so that if a strain is resistant to one of them, it can be eliminated by another.
“If you only have one drug on board, and the mistake ends up being useful, then you end up having a whole bunch of viruses that have the capacity to grow in the presence of that (drug),” Schafer said.
To some extent, there is a divide within the gay community about how to approach the seeming indifference young gay men have toward HIV. Many older gay men feel frustrated by the attitudes of their younger counterparts
“You hear this from gay men of my generation, who lived through a horrific loss, saw the cruelty of this epidemic up close, and now are very frustrated when they see young gay men putting themselves at risk,” Strub said. “And you want to just knock them upside their head. What did we die for?”
But at the same time, Strub, who has had a front row seat to the AIDS epidemic since being infected sometime in the early 1980s, argues that those tragic events don’t represent the current reality of HIV.
“The consequences of HIV transmission are very different today than they were before,” he said. “The problem is that so much of the message that people hear is, ‘It’s no big deal I’ll just pop a pill and not worry about it,’ or ‘Oh my gosh, your life is over and it is the most horrible thing that can happen to a person.’ And the truth is somewhere in between.”
Strub believes the message should be that HIV is a life-changing event. Yes, you can still live a full and vibrant life, but an HIV infection will add complexity and burden. While treatments are effective and generally well tolerated, they can be expensive and come with side effects . Some will experience nausea, vomiting or bone loss, and no one yet knows what it means to take these drugs for 20 years or longer.
“In some ways, it’s day and night. People who acquire HIV today, if they have access to quality medical care, can expect to live literally within a few months of the same life span,” Strub said. “In other ways, though, we’ve not made as much progress. Stigma remains the biggest impediment to dealing with the disease.”
Stigma, he says, is the reason people are reluctant to be tested and find out their HIV status. It is the reason why they are reluctant to access treatment. It’s the reason why people with HIV are reluctant to disclose their status to others.
“And the reason is because the consequences of being associated with the virus or being suspected or people knowing that you have it are very substantial,” he said. “I say that stigma is worse today than it was in years past.”
Increasingly such men get little sympathy from the broader public, which seeks to distance itself from the risk of HIV infection by blaming those infected for their actions.
“The first half of the epidemic, say from the beginning to mid-90s — regardless of what people thought about homosexuality or drug use or whatever level of blame, or morality or religious stuff, or God’s judgment, whatever anybody wanted to impose on it — most people believed that most people with AIDS were going to die, and very possibly a very horrific death,” Strub said. “There was some measure of compassion around that, that kind of transcended the judgment.”
Once combination therapy became available in the mid-90s and the public realized that people were going to live, the perception of people with HIV changed.
“The sympathy largely went away, and instead of being seen through the prism of our ending possibly in horrific death, we were being seen through the prism of our potential to infect others,” he said.
That has led to the criminalization of HIV, with more than 1,000 individuals prosecuted under HIV-specific statutes, for potentially exposing others to HIV through intercourse, biting or spitting.
Those individuals have been punished with harsh sentences even when no actual transmission of HIV occurred.
“But it isn’t even the impact on those people, which is horrific and it’s destroyed lots of lives,” Strub said. “But it’s how this drives stigma, because all this gets covered in the media, and that is very powerful and persuasive with the public.”
Many gay men, sometimes advised to do so by lawyers, have resisted testing, knowing they face potential criminal liability if they know they’re HIV-positive, but not if they are unaware of their status.
“We know most new infections don’t come from people who know that they have it, they come from people who have it and don’t know it,” Strub said. “Once someone gets tested and tests positive, they’re vastly more responsible in their sexual behaviors than people who don’t know it, yet we’re punishing the responsible behavior, and privileging the irresponsible behavior. It just doesn’t make sense.”
HIV criminalization belies the reality of what living with HIV is today. For individuals who know their status and take their medications, their viral loads can be undetectable and the risk of transmission of HIV is almost nonexistent.
“There has not been a single documented, proven case of someone with an undetectable viral load transmitting the virus sexually,” Strub said. “We’ve neglected to recognize the extent to which a person who is undetectable is rendered not infectious.”
The Swiss Federal AIDS Commission recently said that having an undetectable viral load carries a lower risk of transmission than using a condom, which has up to an 8 percent failure rate. It is the new reality of HIV infection today: a functional cure if not an actual one.
Strub, who is 6 feet 1 inch and 165 pounds, said 16 years ago at the height of his HIV infection, he weighed a mere 124 pounds. He had a viral load of 3.3 million and his CD-4 T-cell count, a measure of his remaining immune system, was down to 1. Normal individuals have a count over 500 to 1,000. Anything under 200 meets the clinical definition of AIDS.
He was covered in Kaposi’s sarcomas, cancerous tumors of connective tissue that were once the telltale sign someone had progressed from HIV infection to AIDS.
“Compared to that I consider myself pretty cured,” he said.
In Central Oregon, where despite an increased acceptance of gay, lesbian and transgender individuals, many still don’t feel comfortable telling people about their sexual orientation or their HIV status. Almost all of McCreedy’s gay HIV case-management patients remain in the closet .
“There’s definitely an underground feeling to the gay community,” she said. “People will come up to me and say, ‘Hey, you spoke in my class,’ and then they’ll pull me aside and say, ‘I’m a gay man …’”
She urges them to come to the health department and get an HIV test. But they never come. “We have this old-school thing going on. I have this whole demographic of people that I know feel very ashamed and badly about who they are, what they are, how they are,” McCreedy said.
Many of them left Central Oregon for Portland, San Francisco or other big cities, where they could feel free to be themselves and part of the gay community. Then they got HIV and came back home thinking they were going to die.
“So they moved back in with their parents who never accepted them in the first place, and now they’re not dying, of course. And they’re caring for their elderly parents,” McCreedy said. “It’s a really intense dynamic because a lot of them are still not being accepted.”
When McCreedy counsels HIV-positive clients, she warns them to think very carefully about who they tell they are infected.
Richard, who speaks to a variety of groups about HIV, said people in Central Oregon are accepting of gay and HIV-positive individuals, for the most part. Every once in a while, however, someone will say something that reminds him how much work still needs to be done. When he was preparing to speak to one group outdoors, for example, the organizer of the event asked him to wear plenty of mosquito repellent so he wouldn’t pass on HIV.
“At first it upsets you. You can get sad and angry about it, but then you realize it comes from a place of not being informed,” he said. “And you kind of turn it around and realize, that’s my job, to inform people. Nine times out of 10 their intent was not to hurt you. Their intent was to protect themselves.”
John, a Central Oregon resident who asked to be identified only by his first name, was diagnosed with HIV two years ago. He had felt ill for two years prior to being tested for HIV, but doctors had never considered it. He didn’t fit the profile.
“I’ve never done IV drugs. I’ve never smoked pot. I’ve never snorted coke, never had gay sex,” he said. “I’ve had two partners in my last 35 years, neither one of them have it.”
Instead his doctors suggested it was fibromyalgia or lupus. Frustrated with a lack of answers and his fading energy, he went to a new doctor outside his plan’s network, paying cash and asking her to start from a clean slate. She suggested a complete blood work-up, which included an HIV test.
The next day, she called John with the news he was positive. His viral load was more than 600,000 and his CD-4 T-cell count was less than 40.
Health officials were incredulous, asking him repeatedly if he hadn’t visited a prostitute or done drugs even once. John still doesn’t know for sure how he contracted HIV.
“I’ve been a volunteer fireman for 30 years, and I’ve done emergency medicine care on people who are so badly damaged, they’re covered in blood sometimes,” he said. “I’ve done that all my life as a community member, I don’t know where I got it.”
The infection has had a devastating effect on his life, as he lost his business, his equipment and his home trying to cover all of his medical costs. He now rents a small room, living on $60 a week.
His hands shake continuously from the medications. They affect him so strongly that he takes them before going to bed each night so the effect will begin to wane by midday and he can drive safely in the afternoon.
When his family found out, the rumor mill went into overdrive, and John found himself having to deny the rampant speculation of his relatives. Other than health providers and his family, he’s only told one person, a former co-worker whom he trusts implicitly.
“The saddest part is when you read about it or if there are movies about it, it’s always a drug user or a gay lifestyle,” he said. “It creates a really harsh stereotype.”
John now regularly meets with other HIV-positive individuals in the area for coffee. Most of the attendees are much younger, men who contracted HIV despite everything that is known about how to prevent transmission.
“These men, honestly, could care less about what we know. They got laid or shot up, and they didn’t think about the risk,” he said. “Who cares about what’s coming because I’m screwed anyway,” they tell him. “We all are.”
In October, John received a life-changing phone call from his doctor. Some 18 months after being diagnosed with HIV, his viral load, for the first time, was down to zero.
Although the HIV virus likely lies dormant in the dark corners of his body, as long as he continues to take his medication, it is unlikely to return to measurable levels.
“It was so affirming to believe positively that I could kick its (rear) and to have done so,” he said. “I’m lucky to be alive.” •