Compassion Fatigue

HIV is still a health problem, but getting the public to notice is an uphill battle


Published:

Illustrations by Arthur Giron

Remember the days when it seemed like everyone was thinking about HIV? Mark Peterson does. 

Peterson, who has been working in HIV education and prevention in Detroit for 22 years, believes that, more importantly, there was also a time when people still thought HIV could happen to them. 

Sitting in his office at MAC Health (formerly Michigan AIDS Coalition and now a part of Matrix Human Services) in a converted church close to the Detroit Medical Center, Peterson recites from memory statistics showing that HIV infection rates have remained static in Michigan and elsewhere, long after the government declared it an emergency. Infection rates are not going up, Peterson says, but they are not going down either.

Today, awareness about HIV and AIDS — acquired immune deficiency syndrome — is a far cry from 1999. That year, the Congressional Black Caucus declared HIV and AIDS a health crisis among minorities in the U.S. Experts had realized that nearly 20 years after HIV first ravaged the world, things weren’t getting better. Half of the approximately 600,000 Americans living with HIV or AIDS at the time were not getting treatment — especially those who were black. 

As a result, the Clinton administration devoted an unprecedented $156 million to specifically deliver treatment and education to demographic groups hit hardest by the disease. The goal was to decrease infection rates overall and to help people with HIV get access to treatment and commit themselves to taking care of their health.

This human immunodeficiency virus, in many ways, inspired modern medical advocacy and social justice in the early 1980s, which trickled down to so many other causes. At the same time, white affluent gay men in San Francisco who had money and political clout could get people to pay attention in the early days of AIDS. After all, their friends were dying every day. Hollywood started wearing those classic red ribbons. A cure needed to happen.

But now, more than ever, HIV is an equal opportunity problem. 

“If this isn’t still an emergency,” Peterson says of HIV, “Then what is it?”

That’s the question that Peterson and many others working in HIV awareness today are grappling with. They know the answer — that the risk of contracting HIV is still very real in Detroit, the rest of the state, and across the U.S. 

There are about 1.2 million people living with HIV or AIDS in the U.S. today, according to the Centers for Disease Control and Prevention. Twenty-thousand of them live in Michigan, with about 1,000 newly diagnosed cases every year across the state as of 2013. Most of the new cases happen in Detroit. Young people under the age of 25 now represent the largest number of new infections in the six counties surrounding Detroit, including Wayne. Minorities are still disproportionately affected. Black men with male sex partners are at most risk. But so are young black women and people over 65.

And yet, awareness of HIV, along with perception of risk, has significantly waned in the millennium. It is not glamorous anymore. It is chronic and mundane, the domain of “the black, the brown, the poor,” Peterson says. Compare that to when Ebola hit Africa a few years ago, spreading irrational fear in the U.S. of a disease that the general population had virtually no chance of ever being exposed to.

“There’s definitely compassion fatigue for AIDS today,” Peterson says. “Not really many people anymore think that they will get it.”

And because the stigma is still very strong, HIV often remains a highly guarded secret among people who are infected, which leads them to avoid medications so advanced that, if taken regularly, can suppress the virus to undetectable levels. A person who contracts HIV today can, with the right medical therapies, avoid developing AIDS and live just as long as someone who does not have the virus.

Shalandra Jones

 

From ‘peachy-keen’ to HIV-positive

Shalandra Jones is one of those people. In a past life she was in love in her mid-20s, thinking she had met the man who would save her from being a single mother. Today she is different. She is 44, a healthy black woman living with HIV who crusades against the HIV stigma and works as an advocate for patient care since her diagnosis in 2001.

She found out her status only after routine testing in application for life insurance prior to her wedding. Jones and her fiancé would never marry — he died from the complications of AIDS at 27 in 2005, but not before denying the disease, sporadically seeking treatment, and living under a heavy burden of shame. 

Jones never found out how she got HIV, although she suspects her fiancé either knew about his status or knew he had been exposed and never told her. “It was a topic that was never discussed,” Jones says. 

“When he found out, he just shut down," she says. "He didn’t want to go to the doctor. He was completely ashamed.” (Editor's note: Jones asked Hour Detroit not to use her fiancé's name in order to protect his family’s privacy.) 

Jones says she was “pissed,” but that she never blamed him. Instead, she felt like she had to find a way through the stigma and the disease. “I had three young kids, and I was so depressed,” says Jones, who had her children before contracting HIV. “So unlike (my fiancé), I felt like I had these people that I needed to live for, and I decided I wasn’t going to let HIV define me.”

That seemed impossible at times. After her diagnosis, Jones says the judgment was palpable. She went from feeling like a “peachy-keen” mom to feeling like a worthless cliché. A nurse once asked her if she was a prostitute. “ ‘Do you sell your body for sex?’ ” Jones recalls hearing during a clinic visit. 

At home she says her extended family did not want to be around her. They still believed they could catch HIV from casual contact. Primarily contracted through sexual behaviors, HIV can only be transmitted through contact with blood, semen, rectal fluids, vaginal fluids, and breast milk (and then only when these fluids come into contact with a mucous membrane or damaged skin tissue).

In a bizarre encounter in 2012, Jones received a lecture from a Dearborn police officer during a traffic stop for not disclosing her HIV status (she told him only after he found marijuana in her car and she showed him her medical marijuana card). He told her it made him “mad” to find out that she had HIV, that he didn’t want to attract any of that “crap,” and that he had a family to protect at home. 

Jones would ultimately sue the police department and receive a $40,000 settlement from the city of Dearborn — people with HIV are only required to reveal their status in situations where transmission is possible, such as prior to sexual intercourse.

Jones’s work with MAC Health now consists of helping people get into treatment — and stay there. It’s still an uphill battle, she says, because of how the public continues to perceive AIDS with old biases and the extreme feelings of shame and guilt that prevent people from taking care of themselves. And that is what is defining AIDS activism in Detroit today — fighting the stigma, raising perception of risk in order to prevent new cases, and linking people to treatment to save lives.

 

‘Hit hard, hit early’

HIV is no longer a death sentence. Getting the right treatment at the right time means that someone living with HIV not only has the potential for living a long life, but also has very little chance of infecting someone else.

The calculus of HIV, of course, has not changed. It is still a wickedly efficient virus. It doesn’t go for the rank and file of our immune systems. It attacks the CD4 cells — the commanders. 

When the commanders are down, the rest of the immune system cells do not know what to do. They lose their ability to fight the battles inside our bodies that usually never see the light of day. This is when HIV has won. This is when AIDS finally takes hold, allowing opportunistic infections to take over.

In an untreated individual, this progression can take as little as eight years; death is the end game.

That never has to happen today, and yet “there are so many people out there who have no idea what their options are,” says Michelle George, a nurse who works in HIV prevention and public health with Matrix Human Services. “We’ve got the science right now to be living in an AIDS-free world.” 

Treatment is highly sophisticated. It carries fewer side effects. It is less complicated, too. Jones, for example, takes Atripla, an antiretroviral medication that combines a few drugs into a single daily pill. Hers is a starkly different experience from someone who took HIV medications in the 1980s and ’90s, when it was common to have to take up to 30 pills a day and deal with traumatic side effects like extreme diarrhea, nerve damage, kidney stones, and the redistribution of body fat.

“Some people with HIV (in the early days) felt the treatment was worse than the disease,” Peterson says. “It was like, ‘Do I stay alive and look like this, or do I die of AIDS?’ ”

Atripla, like other modern antiretroviral-class drugs, attacks HIV’s ability to replicate itself without causing collateral damage to healthy cells. That ultimately means less virus in the body. 

“Pregnant women (taking antiretroviral medication) can’t pass HIV to their babies,” George says. “That’s how effective these medications are. It’s almost like a zero chance that you will pass it to someone.”

Research now shows that the earlier a person is diagnosed and immediately put on treatment, the less chance overall that HIV will cause significant harm to the body. It is even possible for someone who suspects they have been exposed to get treatment within 72 hours and never develop HIV.

“Hit hard, hit early,” is the critical strategy for outsmarting the HIV virus, Peterson says. 

 

Understanding the struggle

But hitting hard and early seems quaint in the world of HIV, where countless cultural problems continue to dovetail and become magnified by perhaps the most polarizing public health crisis in modern history.

Do you give clean needles to drug users? That encourages drug use, critics say. Do you give condoms to kids? That encourages sex. And yet both measures have proven to help decrease HIV infection rates in Detroit. More broadly, do we really want to know how complex male sexuality is? After all, HIV affects men the most. Is it intellectually honest, Peterson says, to discuss HIV without discussing how men express their sexual desires?

“I always tell people that if they want to truly understand health and culture, look at HIV,” Peterson says. “It has highlighted so many issues over the years. We can get into these patterns of blaming people for their ‘risky’ behaviors. But I always say the most risky behavior for HIV is the desire for love. We’re all human. We all want that.”

These issues don’t stop at health and sex. Money — and the stigma of dealing with the virus — looms large, especially in Detroit where those living in poverty are more vulnerable to health problems in general and less educated about how HIV spreads.

HIV treatment is very expensive — it can cost approximately $40,000 a year if someone is not dealing with any other health problems — but the stigmas surrounding the disease can be an even bigger deterrent. Like Jones’ fiancé, some people can feel so much pressure to keep it a secret that they end up not getting help and unnecessarily endangering their lives.

“What is shocking to me is that people don’t want to talk about it,” says George, who does work for the NAACP social justice imperative, a program that partly aims to help churches talk about HIV in the black community. “I go into churches in Detroit, and they don’t want to hear it. This is what I hear all the time: ‘HIV is still a problem?’ ”

Federal grants in Detroit make it possible for everyone living with HIV to get treatment, regardless of socioeconomic status. People like Peterson, Jones, and George help HIV patients navigate all the routes to care, in addition to fighting the stigma and educating on the risks. 

The perception of risk, Peterson says, is perhaps the most important thing they must communicate in their work at Matrix Human Services. 

“We know that knowledge alone doesn’t change behaviors,” Peterson says. “The perpetual challenge is getting people to understand once again that HIV can happen to them.”

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