HIV Across Colorado Communities: ‘A political disease,’ the challenge is beyond gay or straight

Until 2010, the United States was one of roughly a dozen countries in the world that barred entry of people with HIV – requiring an HIV test to become a legal U.S. resident and blocking HIV-positive people from obtaining tourist visas. Enacted in 1987 with the claimed intent of preventing HIV from spreading into the country, the travel ban had already failed its objective even then.

HIV activists hailed President Barack Obama’s decision to end the policy as closing an embarrassing chapter in the country’s relationship with the epidemic. The change also brought the story of HIV and AIDS in America a step closer to a global picture that looks very different from the way it has unfolded in the U.S.

Jenna Treiber, a case manager for HIV-positive clients of the Northern Colorado AIDS Project’s center in Greeley, works directly with a group of foreign–born and refugee clients, many from countries with soaring HIV rates and all of whom have HIV themselves.

“Travel into the U.S. occurred previously in a small way for HIV-positive refugee folks, but it was very hard before the travel ban ended,” she said. “It’s a community that not many people see if they don’t want to.”

Treiber said most refugees she’s worked with knew their HIV status before they arrived in the country. “Folks go through full medical screenings before they come so that they can get care when they get here – because of the concerns living in such an enclosed area, as many refugee camps are. Going through a refugee camp is a huge process – people live in a camp for seven years on average.”

Many refugees have been through profoundly traumatic experiences, and “a lot of times there are mental health concerns. It can be really hard to access care for them because mental health is not culturally important to some,” Treiber said. “For others it’s difficult to access any health services with a language barrier.”

A person who’s been granted refugee status receives Medicaid coverage for nine months after arrival in the U.S., and beginning in January 2014 refugees may be able to stay on the program longer because of changes in the Affordable Care Act qualifying more people for Medicaid based on income, Treiber said.

But Treiber said the biggest step would be for people to change the way they think about HIV.

“Personally, I believe reduction of stigma is the main way to make HIV easier to talk about,” she said.

That has been a focus for case managers and leaders throughout the Colorado AIDS project’s four service regions – Denver, Northern Colorado, Southern Colorado and Western Colorado – as it has been for the people paying closest attention to HIV and AIDS throughout the nation and world. When Obama lifted the travel ban, he said, “Now, we talk about reducing the stigma of this disease, yet we’ve treated a visitor living with it as a threat.”

The resonating argument from HIV service workers is that stigma and fear not only affects the lives of people who are already HIV positive, but inhibits the courage for those who don’t know their status to get tested, and for HIV-negative people to think and talk about HIV in efforts to stop its spread. In the U.S., the conversation can stir up homophobia as well as judgments about sexual promiscuity or drug use that compound fear of thinking about one’s own chance of HIV infection.

Statistics about HIV are often organized by route of transmission – in the U.S. they’re commonly divided between men having sex with men (MSM), intravenous drug use and heterosexual sex. But more recently there has been increased use of race, geography, poverty and other social factors in measuring infection rates and targeting services. Government funding for CAP and other HIV/AIDS service organizations is usually earmarked for specific populations deemed as having moderate or high risk, which further determines what types of programs are created.

Richard Blair, regional director of the Southern Colorado AIDS Project headquartered in Colorado Springs, said MSM continue to be the “prioritized” high-risk group in his region, but identified other focal communities to build programs around, including young MSM of color, women, intravenous drug users, and the HIV-positive community to teach them how to prevent transmission to others.

The black community, and particularly black women, have been identified for moderately–elevated risk, and Blair said S–CAP has been partnering with the local NAACP to gather insights and promote testing. “We’ve been doing testing in beauty parlors,” he said.

Southern Colorado has a large Latino population, where there is also an increase in new HIV infections, Blair said. “There are differences in culture with how Hispanic men deal with HIV, and with undocumented immigrants the challenges are great, because they don’t have the paperwork that allows them to receive health care in our country.”

Spanish–speaking S–CAP case manager Lupe Joyner works with Hispanic and undocumented clients, from not only Mexico, she said, but also South America, and other clients from Jamaica, South Asia and elsewhere.

“All my clients were already in the U.S. when they were diagnosed,” Joyner said. “If you have health insurance, it’s costly but relatively easy to get into at least HIV care, and uninsured people can get care through state or federal programs, but they’re not included in the Affordable Care Act and we’re not sure how they’ll be affected by changes coming up.”

For some of those patients, she said, having HIV is part of their fear of returning to their native countries – fearing both stigma and lack of care. “If you ask the Mexican government, they’re going to say ‘yes we have medication for everyone,’ but it’s not what happens.” They may be on medication sometimes but won’t be able to get it consistently – “adherence is a problem,” she said.

It’s complicated, Joyner said, “because HIV is a political disease.”

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A bigger picture of HIV/AIDS

Since the beginning of the AIDS crisis, activists and medical workers have known it isn’t just “a gay disease.” Before either HIV or AIDS was named, the symptoms of the immune disorder initially documented in gay men in 1981 were also observed in users of intravenous drugs, recipients of blood transfusions, infants and Hatians. The U.S. Centers for Disease Control confirmed in 1982 that all those incidences were cases of the same syndrome and formally named it AIDS, and researchers learned in 1983 that it was also affecting large numbers of heterosexual women and men in Africa.

But by the time that picture became crystal clear, it was too late to raise AIDS awareness among all at–risk populations to the same level that gay men were already following the epidemic – which might have prevented the crisis from impacting those communities with the horrific force that the gay community was experiencing.

For some, it was far worse: the CDC has estimated that by 1985, 70 percent of Americans with hemophilia – about 10,000 people – were already HIV positive through blood product transfusions. At the same time, between 50 and 60 percent of intravenous drug users in New York City had been infected. Later that decade, Ryan White, an Indiana teenager with hemophilia who fought with his parents through a high–profile legal battle against a public school district that banned him because he was HIV positive, offered the general public a new face of HIV, and prevention advocates a chance to disrupt the narrative of HIV as an issue specific to the gay community.

Awareness campaigns, prevention counseling, improved understanding of risk behaviors and eventually medical management of HIV cases has slowed the occurrence of new infections in the U.S. – from around 130,000 in 1984 to 47,500 in 2010, according to CDC statistics. Many of the first leaders and activists calling for attention to HIV/AIDS were themselves gay men, and it appears that gay men were one of the first groups to benefit: new infections attributed to sex between men dropped dramatically between the late ’80s and early ’90s, even while transmission through intravenous drug use and heterosexual sex were respectively holding steady and rising.

From the late 1980s through the early 2000s, intravenous drug use and heterosexual sex together accounted for the majority of new infections in the U.S., and MSM constituted less than one third of new infections from 1988 to 1990. Those numbers would eventually flip again, and since 2002 sex between men (but not necessarily openly gay men) has been once again the dominant route of HIV transmission in the U.S.

A 2012 CDC Surveillance Report revealed that in 2010 heterosexual sex was responsible for 25 percent of new infections, the vast majority being of women, while 8 percent of new infections occurred through intravenous drug use. The link in the public consciousness between HIV/AIDS and gay men has continued to be a stumbling block for HIV prevention and the LGBT community alike.

“A lot of people, even including those in the gay community, still see HIV as a gay disease, which ads stigma both ways – to HIV-positive people and gay people,” said Andrew Hickok, Prevention Manager at the Denver Colorado AIDS Project.

It poses a challenge in discovering and treating HIV infections – not only through the sense of stigma around HIV-positive status but also toward seeking an HIV test by identifying oneself as being in a high-risk group or having engaged in risky behavior.

“Knowing your status, and being proud of knowing your status, regardless of what that status is, is an important thing,” Hickok said. “It’s hard enough to come in and say ‘I want an HIV test’ in the first place, so whatever we can do to make it comfortable helps.”

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Needle exchange

Through its needle exchange program called Access Point, DCAP reaches out to intravenous drug users in the Denver area offering them HIV testing, risk reduction counseling, disposal of used needles and, only permitted recently, access to sterile needles and other equipment used to inject drugs.

Needle exchange services were illegal in the state of Colorado until the law changed in 2010, but strongly advocated by organizations that work with HIV.

“We know the drug use is going to happen regardless of clean or dirty needles, so we want them to do it in the safest way,” Hickok said. “It’s about meeting them where they are and doing it in the healthiest way. A lot of our clients hide – there’s clearly a lot of stigma from the general population, as well as self–stigma – people who think they’re just horrible bad people because they’re using. It’s a huge step to come in and say ‘I’m using and I continue to, but I need to do it in the safest way.’”

Hickok said that Access Point offers referrals to addiction services if a client brings up an interest in stopping her or his drug use, “but we’re never going to be the ones to mention it first, because that’s going to turn people away. They know it’s a risk and an addiction they’re dealing with. But there aren’t many places they can get clean needles without being judged.”

Awareness of needle exchange programs like Access Point reaches intravenous drug users mostly by word–of–mouth, Hickok said, which makes the atmosphere of non–judgment and privacy especially important in getting people to use the resource. There isn’t the same kind of visible community of intravenous drug users as there is for prevention workers to use to reach gay men – there are no bars, venues or festivals for intravenous drug users, and it’s much more difficult to find spokespeople among those using intravenous drugs.

But there are some. “One of the things we rely on for our Access Point Program is a really great community advisory board,” Hickok said. The board, consisting of current users, former users, family and personal friends of users and nonusers with a strong interest in supporting the needle exchange programs, keeps the organization in touch with what is happening on the streets.

“They know the places in the city where users hang out, and can spread the word or hand out fliers to let them know about Access Point,” Hickok said.

But Hickok would like to be able to reach out through more than just fliers. The Colorado law that made needle exchange programs safe from prosecution – introduced by state Sen. Pat Steadman – was hailed by supporters as a major positive step in the effort to stop new HIV infections, but Hickok would like DCAP to provide services to people where they are.

“The next thing we’re trying to champion is mobile syringe access for people who don’t have the confidence to come through our doors,” Hickok said. While mobile access is technically not illegal, local and state laws place restrictions that make it unfeasible, he said.

“For example, we have to be 1,000 feet from a school or childcare center, and that’s everywhere. When it comes to childcare centers, we don’t even necessarily know where those are,” he said. Many childcare centers are unmarked, in a small business or home, so even working areas that seem to be approved for distributing clean needles could turn out to be violating the law.

The substances intravenous drug users are injecting are well–known – meth, heroin, speed, sometimes cocaine – but one population that could benefit from access to clean syringes use them for something unrelated to drug use at all: hormones.

“Another population served by needle exchange programs in some parts of the country is transgender people wanting to inject hormones,” Hickok said. In a demographic group that has disproportionately high rates of poverty and disproportionately low access to appropriate health care services, trans people in some major metropolitan areas turn to the streets to find testosterone or estrogen, silicone, and syringes, making their best efforts to transition on their own.

It’s a population Hickok hasn’t noticed taking advantage of Access Point, and the extent to which it’s happening in Denver is unknown, but Hickok said Access Point would be competent to offer risk–reduction information and needles to someone who might be injecting unprescribed hormones, steroids, or any substance whether it’s a drug or not. “If a trans person came in right away, they’d be able to help,” he said.

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Mental health connection

Working with populations with HIV or high risk for HIV touches layered social factors – poverty, drug use, sexual orientation, race, gender, gender identity, location – each representing measurable statistical factors in an individual or group’s chance of being exposed to HIV. Part of the reason so many factors play a role is that so many of them overlap, especially poverty, drug use and mental illness.

“In general, individuals with mental illness are at a risk for a lot of factors – it’s often combined with homelessness and substance abuse,” said Jeff Tucker, Director of Human Resources at the Mental Health Center of Denver, a partner organization with CAP. “There are a substantial number of people with mental illness who have engaged in prostitution just to support themselves – both men and women – and many have been victims of sexual assault.”

Not only does mental illness increase risk factors for exposure to HIV, the stress associated with being HIV positive can itself increase depression and anxiety – especially among women and elders, and estimates of the overall rate of depression among HIV-positive people range from 20 to 40 percent, compared to 10 percent of the general population. Serious depression, in turn, reduces the likelihood that people with HIV will stick to their medications as reliably as they need to.

Tucker said a key issue in working with people experiencing mental illness is – once again – stigma. Especially right now.

“There’s a perception that people who have mental illness are dangerous, but most people who commit crimes, even violent crimes, don’t have a mental illness. What’s out there is around the shootings in Aurora and Sandy Hook, and people saying ‘oh, the shooters must be crazy to have done that.’ We don’t even know if they have mental illnesses, and even if they do, most people with mental illnesses don’t commit these kinds of crimes.”

People with mental illness are, however, more likely to become victims of crimes, Tucker said. “I don’t want to give the impression that they all are, but many of the stories we hear are quite shocking. Our goal is to get people back to trusting and having faith in human beings.”

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Managing HIV infections

When a person tests positive for HIV, it’s crucial to connect with service providers and be able to accept and trust their support and counsel. While HIV is no longer the overwhelmingly–fatal disease it once was, the ability to expect a full, healthy lifespan with HIV is achieved only through HIV medications, and taking them the right way.

Jeff Basinger, Regional Director of Western Colorado AIDS Project explained, “On the scale for HIV in the U.S., for every 100 people with HIV, 80 know they have it, 62 are linked to regular health care, 41 are retained in care long–term, 36 have access to HIV medications and 28 have an undetectable viral load.”

That word, “undetectable,” carries an immense, if sometimes misunderstood, meaning in communities and social circles of HIV-positive people – culturally, it’s a signifier of a state of health and normalcy in the same way that having an HIV infection advance to diagnosis of “AIDS” is culturally seen as alarming. But an undetectable viral load, as the ideal state for an HIV-positive person, is also medically important for HIV-positive people and others in contact with them.

AIDS, on one hand, is diagnosed when an HIV-positive patient’s immune system has been degraded to a certain level, determined by counting CD4 white blood cells in a blood sample or by the presence of opportunistic infections. That patient will continue to “have AIDS” even if the immune system bounces back, lending to a purpose for the AIDS diagnosis as a statistical tool to track HIV infections in populations more than as indicating a patient’s present health or life expectancy. Viral load, on the other hand, refers to the present, and is an ongoing measurement in individual HIV cases.

When HIV-positive people take anti–retroviral medications on a regular basis, Basinger explained, it’s generally expected that the amount of the virus in their blood – the viral load – should steadily decrease until it drops below the threshold where it no longer shows up laboratory tests. That level is the ideal “undetectable” viral load – less than around 50 copies of the virus per cubic centimeter of blood, whereas a viral load on the high end of the spectrum could be 100,000 copies or more. Maintaining viral load at an undetectable level suggests the virus is not actively damaging the immune system or spreading through the body.

Not only does that lead to better outcomes in health, but also to dramatically less risk of infecting others; the chance that a risky exposure to an HIV-positive person will transmit the virus is related to the amount of virus in the HIV-positive person’s bodily fluids, including blood. But if medications are stopped, or taken inconsistently, the activity of the virus in the body springs back. Potentially, the virus could emerge in a form that is resistant to the medications that had been suppressing it before – and if another person is infected by that resistant strain, she or he starts off with an infection that can’t be well–controlled with the medication it is resistant to.

When people have highly–resistant strains of HIV, medication regimes that typically work wonders will fail to completely control the virus, Basinger said, leaving patients to hope a new kind of medication is released before it’s too late.

And since decreasing viral load also decreases the chance of transmission to others, getting HIV-positive people into medical care, on medications and taking them consistently is a central goal of working with clients who are already HIV-positive: improving outcomes in their lives and the chance of new infections at the same time.

“Our primary goal as case managers is to get clients in medical care and make sure they’re adhering to it,” said Kira Whitley, who manages a group of case managers at Southern Colorado AIDS Project along with a few clients of her own.

Case managers are people who work directly with HIV-positive patients through a personal relationship, providing human support and providing the client the services and referrals the organization offers. Individuals who come in to testing centers and test positive are quickly connected to a case manager after follow–up testing at a lab or hospital confirms an HIV infection.

Frequency of meetings between a client and case manager can vary, and new clients will begin by discussing with a case manager what kinds of needs and services the case manager will be involved in.

“It’s dealing with a lot of different issues – some have low needs and just want a little social support, so we see them maybe once a year,” Whitley said. “A lot of our clients are highly functional. If you catch HIV early enough, it doesn’t affect work at all. Other groups are facing homelessness and low income, so we connect them with housing and financial assistance.”

In each service region, CAP has teams of case managers to work with a wide variety of patients, often assigning clients facing certain circumstances with a case manager familiar with them, though with less rigidity. “Case management is not the same as prevention, where cases are segmented,” Whitley said.

A client’s mental state, living situation, route of infection, current health and existing knowledge of HIV are all factors in creating a plan for services. And Basinger from WestCAP said that in rural areas, another major factor in plants for services is the client’s geographic distance from the nearest place for HIV treatment.

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HIV in rural communities

“It’s as difficult to manage HIV infections in a rural community as it is in an urban community,” Basinger said. “I know in Denver it certainly isn’t easy, but the general public needs to understand how medically under–served people in a rural community are.” 

The region served by WestCAP – 22 of the state’s 64 counties – includes Grand Junction, Durango, Steamboat Springs and the big ski resorts of Aspen and Vail, along with the most sparsely–populated regions of the state.

“A lot of our work has to be done by telephone, fax and email, and there’s also a lot of travel,” Basinger said.

In the entire WestCAP region there are only three physicians who are HIV specialists, working out of Durango, Glenwood Springs and Grand Junction. A few others come in from Denver on a monthly basis, leaving patients a limited window to make their appointments and less flexibility if they have difficulty getting to them. Clients in remote areas might have a case manager drive them to appointments.

Many people diagnosed with HIV in rural areas move to bigger cities with better access to health care and support, while at the same time people who are HIV positive move to Colorado from other states that have long waiting lists to receive anti-retroviral medication, Basinger said. The longest waiting lists in the nation have been in the Southeast, particularly Florida and Georgia where each state’s list was in the thousands until a 2012 federal funding package closed a significant amount of the gap there and in other states.

The cultural mix in Western Colorado is different from the Denver area, with much less of a visible LGBT presence, Basinger said. While there are fewer HIV cases overall in the region, a larger proportion of them are intravenous drug users or women.

“In rural areas, there are more cases of men who travel to Denver to have sex with men, then return and infect their wives or girlfriends,” Basinger said. “It’s more of a closeted culture here, and more men who have sex with men but don’t identify as gay.”

A challenge that comes with that – particularly in the cases of women infected by a partner – is discovering they have HIV when they haven’t thought or learned much about it before. “The women certainly are dealing with a wide range of issues, from fidelity of the marriage partnership to caring for family and children,” Basinger said. “And we have clients who are certainly fearful of being part of WestCAP because of homophobia, whether it’s women or MSM.”

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Women and children

“The majority of women got HIV through heterosexual contact,” Treiber from N–CAP said, “and we reach out to women in high or moderate risk populations. Some have used intravenous drugs and others have partners who use intravenous drugs or are MSM.”

Since many women aren’t aware of being at risk for HIV – “It’s definitely more difficult to reach out to women,” Treiber said – routine HIV testing during pregnancy is one place where they can learn their status and start treatment to avoid passing the infection to the child.

Throughout the world, children who have HIV overwhelmingly were infected by HIV-positive mothers through childbirth or breastfeeding, and according to the CDC, 25 percent of children born in the U.S. to an HIV-positive mother who isn’t receiving treatment are themselves infected with HIV. With HIV treatment, transmission rates are low enough that HIV service organizations recommend women who want to have children to do so.

“I’ve noticed that when a lot of women find out they have HIV, the first thing that comes to their mind is that they can’t have children, and that’s a fear we have to dispel,” Whitley from S–CAP said. “As long as they’re adhering to medication there’s less than a 1 percent chance of passing HIV on to their child. We encourage them to have children if they want.”

If the infant is given anti-retroviral medications shortly after birth, that can further reduce the chance that a potential exposure results in HIV infection for the child.

Aside from childbirth, Whitley said that another concern HIV-positive women have is privacy; “often, especially from females, people who get infected through heterosexual contact have a lot of concern about who knows and who has to find out,” she said.

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Curing the stigma 

“We have had several clients fired because of HIV. It can’t really happen legally, but it does happen,” Whitley said. “There’s not a lot we can do – we don’t’ have a lot of legal resources – and employers do a good job of coming up with another reason to cover that it was related to HIV, but our clients know.”

Concerns about discrimination and judgment are widespread in the HIV-positive community – most sources brought it up in one way or another as a top concern that CAP’s clients have, and gay men often describe the experience of revealing HIV-positive status as “coming out” a second time.

For closeted MSM and straight people with HIV – who have no experience with coming out – it’s the challenge of doing it for first time. Or in some cases, it’s being so afraid of judgment or assumptions made about them that they don’t seek help at all.

“We actually just had a sad case where a heterosexual male who had HIV through a blood transfusion had been afraid to seek treatment for years because he didn’t want to be thought of as gay or a drug user,” Whitley said. “When he finally came in, it was too late.”

One place to go to challenge that stigma is with youth, which several of the case managers and CAP directors advocated, in hopes that the next generation of people to reach adulthood will have awareness and understanding of HIV members whether they will be members of a high–risk category or not.

“We do a lot of education in schools,” Hickok from DCAP said. “Various schools will call us to do HIV and sexual health curriculum, and we test youth age 14-24 – it’s lots of testing.”

Hickok said that even if someone comes in to DCAP and is unlikely to test positive, they’ll provide a test.

“There are a lot of worried folks who come in and are very low–risk – not sexually active, or not sexually active since their last test – and we won’t deny them a test. It’s just peace of mind,” he said, although the overwhelming likelihood is that they won’t test positive for HIV.

And to those who do test positive: “A message we send is, if you have HIV, you didn’t ‘mess up,’” Hickok said. “It’s just something that happened. It’s a huge challenge to work against that stigma.”