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Negative effects

A change in tactics in the national fight against AIDS puts regional programs in jeopardy

BRATTLEBORO—For nearly a decade, the AIDS Project of Southern Vermont has run programs that serve high-risk men and women who don’t have human immunodeficiency virus (HIV), the virus that causes the disease — a clientele known as “negatives.”

The goal: to keep them that way.

The Men’s Program and the Women’s Program provide information and support geared to communicate with their respective clientele. The programs have offered support and education to help them avoid risky behavior that spreads HIV.

And both programs will lose their funding next year.

“We want to be as realistic as possible and prepare the community as much as possible,” said Alex Potter, HIV prevention specialist with the Men’s Program, which might not exist come 2013, at least not in its current form.

“The Women’s Program will no longer be,” said Sue Conley, HIV prevention specialist for the Women’s Program.

According to Potter, the Centers for Disease Control (CDC), the programs’ federal funder, decided to shift its course.

Potter explained that President Obama’s National HIV/AIDS Strategy, introduced in 2010, recommends re-allocating how the country funds efforts to combat HIV and AIDS.

The funding priorities shift from prevention efforts like the Men’s Program and the Women’s Program to testing and treating people who have contracted the virus.

Potter stresses that the AIDS Project supports the CDC’s strategy — “Kudos for the first national strategy,” he said — while understanding the funding shift will have ramifications for the state.

According to Potter, the CDC wants to introduce a model of finding people infected with HIV, getting them on medication, and thus halting that person’s ability to spread the disease.

Over time, this strategy will lower a community’s overall viral load, bringing HIV under control within this generation, said Potter.

But the new priorities in funding threaten the programs that identify and reach the people who don’t get tested, he said.

Conley fears the number of HIV cases could increase because the new medical model won’t reach people before they’re infected.

“A lot of people know they should eat right and exercise, and they don’t. A lot of people know they should get tested, and they don’t,” Potter said.

Risks

HIV flowed into the mainstream in 1981 when the CDC published an article in its publication Morbidity and Mortality Weekly Report chronicling a rare lung infection in five previously healthy gay men based in Los Angeles. Other symptoms indicated that the men’s immune systems were not functioning properly.

Newspaper reports followed the CDC’s publication, according to the U.S. Department of Health & Human Services website AIDS.gov.

The HIV virus, like most viruses, attacks the body’s cells. HIV, however, attacks key cells — T cells or CD4 cells — belonging to the immune system.

“Your body has to have these cells to fight infections and disease, but HIV invades them, uses them to make more copies of itself, and then destroys them,” according to the website.

“Over time, HIV can destroy so many of your CD4 cells that your body can’t fight infections and diseases anymore. When that happens, HIV infection can lead to AIDS.”

Potter and Conley say that despite the advances around HIV, the general public still carries a variety of misconceptions about the virus.

Potter explained that discussing prevention runs into barriers even 30 years after the disease revealed itself to the mass consciousness.

HIV is most easily transmitted through sex and intravenous drug use — two subjects the American culture doesn’t want to talk about, said Potter.

Another barrier is adults’ discomfort about talking to children about HIV, sex, and drugs.

According to a 2009 risk survey of Vermont youths, 14 percent of high schoolers had already had four sexual partners. Of those, 8 percent had had sex before age 13, said Conley. Twenty-four percent had used drugs or alcohol prior to their most recent sexual experience.

In America, HIV has hit the gay and bisexual populations the most, as well as people of color, said Potter. The disease right now has increased among young black and Latino gay men.

“Stigmas are everywhere,” Conley said. “You have to battle it everywhere.”

The prevention specialists say some people wrongly believe that AIDS is “only a gay man’s disease” or falsely think that the virus is transmitted through urine or through mosquito bites.

In Windham County, they say, people often fall back on thinking since they live in a sheltered and rural region, they don’t need to worry about HIV.

Also, people in the area participate in “serial monogamy,” engaging in sexual relations with one partner at a time but falling madly in and out of love every six months or so and thus accumulating a large and complicated sexual history.

The common response Potter hears in this respect is, “I asked [his HIV status], and he said he was fine.”

A person’s risk of contracting HIV varies depending on his or her behavior.

Conley discusses the realities of HIV transmission in plain language, explaining the process in terms of “fluids and holes.”

The virus enters the body through holes via some bodily fluids, she tells people.

Not all fluids or holes carry the same level of risk, she says (see sidebar).

People sometimes think that their identity or what population they fall into determines their risk for HIV.

Potter said that many young people are seeing their sexual identities as fluid and reject labels like “gay,” “lesbian,” “bisexual,” or “heterosexual.”

But the wider range of sexual experiences that can come with that fluid identity opens people to a higher risk of HIV infection, he said.

“Judge risk on behavior, not identity,” Potter urges.

The programs

The Men’s Program and Women’s Program assist men and women in changing high-risk behavior through building community.

The Men’s Program reaches out to high-risk gay and bisexual men, while the Women’s Program is geared toward high-risk heterosexual women.

The programs’ participants come from the Brattleboro area, New Hampshire, and western Massachusetts.

Funding for the programs comes from the CDC via the Vermont Department of Health (VDH).

The Men’s Program targets men at high risk for HIV infection, but who have not contracted the virus. The idea is to keep them negative, said Potter.

Over 30 years, HIV has largely been held within the gay community, said Potter, and Vermont echos this trend.

The Men’s Program uses a CDC-approved model called “Mpowerment,” created in California. Mpowerment started in an urban area, which the AIDS Project adapted to Brattleboro’s rural setting, said Potter.

Mpowerment combines formal and informal outreach with publicity and educational materials designed to reach an audience of gay and bisexual men.

The program has done well reaching local gay men over 40, but Potter said they are trying to attract more men in their 20s and 30s.

Men in their 20s represent an age range with huge risk, he said. This group has become a little complacent about HIV due in part to the success of antiretroviral drugs, a class of drugs that, taken together, can stave off the virus’s ability to cause AIDS.

The women Conley works with in the Women’s Program include those with substance abuse issues, intravenous drug users, and sex workers. Conley also works with women in poverty.

Poverty and its consequences — like the desperation that compels women to trade sex for money, drugs, or a place to stay — come with their own risks.

Domestic violence often plays a role in women’s risk for contracting HIV, said Conley.

Violent male partners can block a woman from caring or advocating for herself. According to Conley, abusive men generally stop women from leaving the relationship or seeking medical attention.

Such abusive partners won’t negotiate wearing a condom.

Women with abusive partners also live with the fear of getting beaten if they divulge they have HIV despite the fact their partner probably gave it to them, she said.

“I hope that people would see how important it is that this information continues to get shared,” said Conley.

Some behaviors that land a woman in prison also go hand-in-hand with increased HIV risks, she said.

All these women are unlikely to access the CDC’s new test-and-treat model, said Conley.

The Woman’s Program uses a CDC model designed for heterosexual women and their partners called RAPP (Real AIDS Prevention Project).

Like Mpowerment, RAPP was developed in an urban setting: community housing areas serving largely black and Latina populations, she said. Conley has adapted the program for rural Vermont.

RAPP uses small group gatherings called “Safe Talks.” Conley compares it to a Tupperware party with condoms.

At the talk, Conley speaks with women about HIV, behaviors that increase their risk, how to properly use male and female condoms, and plans for increasing condom use.

Conley also spends time discussing with women how to negotiate using condoms with often-reluctant male partners.

Hosts of Safe Talks feel safe and comfortable in their homes talking with other women, said Conley.

Conley also presents Safe Talks to local agencies like the Boys & Girls Clubs, Youth Services of Brattleboro, Westgate Housing Community, and Making the Most of I.

Although focusing on heterosexual women, Conley also provides presentations to small groups of both genders. She distributes condoms to business partners like local hotels and bars, and she leaves brochures at numerous businesses.

The Women’s Program also recruits volunteers to develop a peer network in the community. Volunteers visit areas where women at risk for HIV are likely to visit, providing information on a one-on-one basis.

Pluses and minuses

The Vermont Department of Health (VDH) designates five hours a week for HIV testing to a nurse at each of the department’s community-based offices, said Conley.

“What are you going to do in five hours?” she asked.

Vermont might not have as many HIV cases as the rest of the country, said Conley.

“And, well, let’s keep it like that,” she said.

As a rural state with comparatively low rates of HIV infection, Vermont will find its budget slashed, Potter said.

In previous years, the CDC sent $1.1 million to the VDH. In 2013, the funding will drop to between $870,000 and $943,000. Starting in 2014, the monies will sink to an estimated $750,000.

Additionally, the CDC is changing how states can spend their HIV prevention funding, said Potter.

Of the money the CDC sends, VDH will be allowed to spend 75 percent on HIV testing and counseling, condom distribution, counseling for people testing positive for HIV, and policy initiatives.

The remaining 25 percent of statewide funds can go to prevention for high-risk “negatives,” he said.

The Men’s Program’s budget in 2012 is $104,583, said Potter, who added that he and Conley don’t argue with the study’s conclusions saying that there are people in America who need the funds more than Vermonters.

In particular, government has to help young black gay men, said Potter, who noted that “this young generation is being decimated by HIV.”

But the CDC’s change means Vermont will have to focus what money it receives on high-priority groups, like gay men and intravenous drug users.

Although Vermont provides a good range of health care services, women’s health still falls low on the list of priorities, said Conley and Potter.

The Woman’s Program could lose all its funding, said Conley, since the heterosexual women the program serves comprise a category of people that doesn’t qualify as high-risk, said Potter and Conley.

Of women, African-American women are at the highest risk, but African-American women also make up a low percentage of women in Vermont overall, Conley said.

According to Conley, overall the numbers of HIV cases in Vermont decreased between 2003 and 2008. Of new cases, however, women make up 17 percent.

Among Vermont women, heterosexual sex is sited as the mode of transmission for 56 percent of HIV diagnoses and 36 percent of all new AIDS diagnoses.

For Vermont, that’s high, she said.

Burlington and Brattleboro have active HIV prevention programs, said Potter. But the central part of the state is pretty empty.

Conley wants to extend the Women’s Program to serve communities in the Bellows Falls and Springfield area. This outreach won’t happen without funding, she said.

Changing the funding structure doesn’t mean the need for prevention for heterosexual women will disappear, said Conley. The rates of sexually transmitted diseases among female teens have increased over recent years.

“Yes, we’re rural, but we shouldn’t get infected either,” said Potter.

Potter said the staff at the AIDS Project are not critical of either the CDC or VDH, which has always stood as a steadfast partner.

“We understand where the change is coming from,” he said. “But we can’t deny that rural areas are taking a hit.”

Community

Two of the primary risk factors for contracting HIV include men having sex with men and intravenous drug use, said Potter and Conley.

But information alone doesn’t change behavior. That’s where community building comes into the strategy.

Community building means using group gatherings like meetings or parties as venues for presenting HIV prevention discussion.

The Men’s Program also serves gay men socially, allowing them to build connections in a rural area that doesn’t offer gathering places like gay bars, said Potter.

Potter said that a gay man who had moved from Boston to western Massachusetts recently told him, “I don’t know what I would have done without you.”

For more than 30 years, Potter said, the most effective method of behavior change has come from working within the network of community. Effective community outreach involves healthcare workers like Potter and Conley building relationships and trust with the people they want to reach.

“When we do our job well, the people we want to talk to view us as health-care workers who care about their health,” said Potter.

People are more likely to make a change when they witness their peers changing, he added.

Volunteers open their homes for meetings. As a result, said Potter, members get to see fellow gay men committed to HIV prevention behaviors like talking about HIV prevention with partners, practicing safer sex, and HIV testing.

“We know guys have risky sex — like having sex while drunk and forgetting to use a condom,” said Potter. His job, he said, is to help men develop plans so they practice safer sex without exception.

Barriers to behavior change and practicing safe sex swing the spectrum, said Potter. For example, condoms exacerbate erectile disfunction by lessening sensation, he said. Men with such impotence problems sometimes feel embarrassed to discuss the issue with a partner.

Or if people have had a few drinks and everything is moving by in a blur, they might forget the condom, Potter said.

Talking to potential partners about HIV and whether they’ve been tested can spark awkward conversations, said Potter, pointing out that such discussions often hit the bullseye of self-esteem issues, bolstering the fear “what if he leaves?”

According to Potter, participating in a supportive community committed to HIV prevention can lay the foundation for a member’s confidence and self-respect.

Role models

The Women’s Program follows a similar community-building structure as its sibling.

In addition, the Women’s Program uses “role model stories” to reach women, said Conley. Role model stories are written by local women who share their experience about changing behavior around HIV prevention, behavior like getting tested or increasing condom use.

She said that research has shown that people shift their behavior in stages, starting with having no intention of making a change, to thinking about making a change, to preparation, then action, to finally incorporating the change in daily life.

Women, she said, alter their behavior more often when they can relate to a peer who has made a similar change.

Conley said peer network volunteers talked with 163 women last year. She held seven stage-based encounters with women and 53 Safe Talks. She tested and counseled 77 men and women in 2011 and spoke with 144 men and women during HIV prevention presentations.

Conley said that some of the challenges the Women’s Program faces include recruiting volunteers in a down economy and finding enough hosts for in-home Safe Talks.

Stigma attached to HIV is behind the difficulty finding hosts, she said. Women tell her they’re afraid that if they host a party, guests will think they have the virus.

But, despite the challenges, Conley sees success.

She sees it in the pre- and post-presentation tests that she gives participants. These tests demonstrate how participants’ understanding of HIV and condom usage has increased, she said.

Reaching people in rural communities is all about relationships and building connections, said Conley.

Conley said she’s known as “the Condom Lady” at many of the agencies she visits. This identity is fine by her.

What losing funding will mean

As it’s structured, with two staff members, a newsletter and outreach events, the Men’s Program won’t continue after this year, Potter said.

According to Potter, the AIDS Project will use 2012 to continue the Men’s and Women’s Programs as usual, while the staff identify priorities and prepare the community to take on pieces as volunteers.

“They [gay men] want this to be a welcoming community,” Potter said.

The AIDS Project will also look for other sources of funding for the programs. The need for sex education and disease prevention for women and young girls is huge, said Potter.

“It’s going to change. It’s going to change a lot,” Potter said.

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Originally published in The Commons issue #138 (Wednesday, February 8, 2012).

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