Running on Empty 

With the recent loss of a major grant, outreach workers across the state fight to keep HIV and hepatitis C prevention programs from disappearing.

On a recent afternoon, Eddie Rudd heads west from Bozeman in a white Chevy van, smoking unfiltered Camel cigarettes and drinking Mountain Dew. In the front seat, he carries a bagful of condoms, lube and what's known as a "vein care kit" or "fit pack," which includes bleach for disinfecting syringes. The goods are a gift for a Gallatin Valley couple that's been mainlining meth.

"I'll bring them water, oranges, whatever," Rudd says. "I build up a relationship with them. And trust is the main thing, because they're always paranoid. They're always thinking that you're a cop."

Rudd is clearly not a cop. Fading prison tattoos line his forearms—lightning bolts, skulls and "FTW," which stands for "Fuck the World," among others. Rudd, 46, says he's been sober and law abiding for 10 years, and the once hard-edged felon is, admittedly, softening. The items he's delivering to the Gallatin County couple are part of a statewide outreach effort to keep high-risk residents from getting sick from sharing needles.

"I do it from my heart, because I'm [hepatitis C] positive," says Rudd, who was diagnosed with the virus in 1999. "And I want to go out there and make a difference."

Until June, Eddie Rudd and his wife Casey worked with the Montana Targeted Prevention program (MTAP). The Centers for Disease Control and Prevention (CDC) distributed $325,000 last year to the Missoula Aids Council, which then hired subcontractors like the Rudds into the MTAP program, deploying the outreach workers across the state to test residents for HIV and hepatitis C (HCV). The subcontractors also armed their target populations with tools to ward off blood-borne illnesses.

MTAP outreach workers focus on those most at risk of contracting HIV, such as men who have sex with men, and those disproportionately affected by HCV, like intravenous drug users. Each MTAP representative is uniquely equipped to communicate with a defined demographic.

The Rudds, for instance, work mainly with drug users. The couple, along with a third MTAP outreach worker affiliated with their Bozeman nonprofit, Connections, administer roughly 60 HIV and HCV tests monthly.

click to enlarge Martha and Bill Spotted Eagle, who conducted HIV testing on the Blackfeet Reservation, say a funding loss leaves them running low on HIV tests like the one pictured above. In 2007, only 35 percent of Montanans between the ages of 18 and 64 reported they’d been tested for HIV, according to the CDC’s Behavioral Risk Factor Surveillance System. - PHOTO BY CHAD HARDER
  • Photo by Chad Harder
  • Martha and Bill Spotted Eagle, who conducted HIV testing on the Blackfeet Reservation, say a funding loss leaves them running low on HIV tests like the one pictured above. In 2007, only 35 percent of Montanans between the ages of 18 and 64 reported they’d been tested for HIV, according to the CDC’s Behavioral Risk Factor Surveillance System.

But the Rudds' workload is in danger of significantly dropping off.

CDC did not renew MTAP's grant in June. That leaves the Rudds and 13 other outreach workers across the state with fewer resources to stop the preventable, incurable and costly diseases.

"We are going to run out of money shortly to do outreach work like we used to," Casey Rudd says. "It is frustrating that we've built up all these bonds with people and now we don't have what we need to do our work. It's extremely frustrating, not to mention dangerous—not only for them, because they're using drugs, but for the entire community."

Eddie Rudd picked up a heroin habit while serving time for burglary in California's Folsom State Prison in the 1980s. Even for Rudd, a repeat offender who was hardened early in life, Folsom was tough to stomach. The drug helped him ride out his time.

"When you're in a maximum security prison," Rudd explains, "you can't go and run and tell the guard that some guy is getting stabbed or some guy is getting thrown off the tier. For me to deal with that, I took to using heroin."

Rudd isn't sure if he contracted HCV from sharing a syringe or from the jailhouse tattoo needles that etched gang markings into his arms. It's a moot point now.

"It doesn't matter what I take for it," he says. "It's not going away."

HCV spreads through contact with infected blood. Blood transfusions were a common transmission route until 1992, when more efficient screening procedures were introduced. Today, the disease is most frequently spread through intravenous drug use. Sex with an infected person is a possible infection route, as well, although the CDC says it's rare.

HCV causes nausea, fatigue, joint pain and fever. Chronic liver inflammation develops in as many as 75 percent of people infected. About 20 percent of those testing HCV positive develop cirrhosis, or advanced liver scarring, from long-term inflammation. Liver failure from chronic HCV is one of the most common reasons for liver transplants in the United States.

There were 943 cases of HCV on record in Montana in 2008, the most recent data available. Because symptoms can take decades to appear, the CDC and hepatitis experts like the Rudds say the virus is drastically underreported, especially among intravenous drug users.

"It is running rampant in this state, especially among young people," says Casey Rudd. "I'm talking high school, junior high—they're coming up positive, and they know nothing about hep C. That's not education that they get in school. They get HIV education. But they don't get hep C education. We're trying to reach them on the street at a young age, so they know about this disease."

By the time Eddie Rudd started developing symptoms in 1999, he was serving time in the Missoula Pre-Release Center for his fourth DUI, a felony. His body ached and he slept more hours than he spent awake. When the doctor told him he had HCV, Rudd thought he was about to die.

"I closed up right then and there. That's all I heard—that I was positive," he recalls.

He says the doctor didn't even look at him.

"I think it is because of the stigma," he says. "He probably thought that I was a junkie. I had tattoos all over me. And you know that's the first thing that comes in their mind, that you're a junkie."

Eddie Rudd was a junkie. But that's not the case anymore. In the '90s, he began a transformation. Rudd's diagnosis motivated him and his wife—also a former drug addict—to become certified hepatitis C prevention specialists. When the CDC started funding MTAP in 2000, the Rudds eagerly hopped aboard. The couple's Bozeman-based nonprofit, which Casey Rudd founded in 1998, also helps rehabilitate felony offenders and assists newly released inmates in finding jobs and homes. The Rudds' background puts them in an ideal position to combine MTAP outreach with their nonprofit's goal: helping disenfranchised individuals who have drifted to the fringe become productive members of the community.

"Eddie and I, we make no bones, we speak their language," says Casey Rudd. "We come from the same place."

A world away from the Rudds' office in Bozeman, MTAP outreach workers Bill and Martha Spotted Eagle tell a similar story. Situated on the 1.5-million acre Blackfeet Reservation in northern Montana, the Spotted Eagles worry about how to proceed with their work knowing a primary funding source has dried up. The condom supply MTAP provided is already dwindling. HIV tests are also a scarce commodity. Bill Spotted Eagle says when the tests are gone, that's it—he won't be able to test on the reservation anymore.

"[The lost grant money] really hurts us, because of that simple fact," he says.

As a child, Bill Spotted Eagle learned how to dance in traditional Blackfeet style. He loved the sound of songs and prayers passed on by his elders, and the lessons those songs and prayers taught him. But he says he drifted away from those native customs as a young man, and he began to drink. He's sober today and aims to reconnect others in his community to the strength provided by Blackfeet tradition.

"They told me that one day, this is going to be an important tool for me," he says, referring to his parents' teachings.

Bill Spotted Eagle believes that addiction—and many of the unhealthy behaviors that go along with it—is symptomatic of a society losing sight of its roots. When one drifts between two cultures, he says, it's easy to get lost. That's why he teaches indigenous people how to reconnect through Native spirituality. As an MTAP subcontractor, he incorporated those teachings into his HIV and HCV prevention outreach.

"It's really important that they see it from an individual who is the same nationality they are," Bill Spotted Eagle says.

click to enlarge Christa Weathers assumed her position as the executive director of the Missoula AIDS Council in February. Since then, a financial crunch at the nonprofit has forced her to lay off 14 outreach workers, one supervisor and the AIDS Council’s office manager. “The impact is huge,” she says. - PHOTO BY CHAD HARDER
  • Photo by Chad Harder
  • Christa Weathers assumed her position as the executive director of the Missoula AIDS Council in February. Since then, a financial crunch at the nonprofit has forced her to lay off 14 outreach workers, one supervisor and the AIDS Council’s office manager. “The impact is huge,” she says.

Even so, persuading Browning residents to get an AIDS test isn't always easy. As in much of rural Montana, gay members of the community face possible discrimination and ridicule, and, in turn, often keep their sexuality under wraps.

"There's a real homophobia," says Martha Spotted Eagle, Bill's wife and a registered nurse who oversaw MTAP outreach efforts on the Blackfeet and Fort Peck reservations.

That fear makes the back door to the Spotted Eagles' Browning office all the more vital; it's a convenient way for patients to surreptitiously slip in for a free AIDS test. The $5 gas card provided by MTAP also lured clients. Every little bit helps to get tribal members tested for what is often referred to as simply "the gay disease."

"A large portion of our pull to get these people to come in for testing was the incentives that were provided," Martha Spotted Eagle says. "So, of course, with the cut in the program, we are already seeing a major decline in people coming in for testing and/or follow-up."

What's most frustrating, Martha Spotted Eagle says, is the couple's long-term investment in the program, and how their strong standing in the community may suffer.

"It has taken so long for us to build that trust relationship," Martha Spotted Eagle says. "And then it just stopped."

Rick Holman, 63, remembers when HIV was called GRID, or "gay related immune disease." He recalls doctors who, unsure of how the disease was transmitted, wore protective gear that looked like moon suits to prevent from becoming infected. In the early 1980s, as a wave of sick and dying men flooded inner city hospitals, Holman lived in Houston and watched as the epidemic took hold.

"I was going to as many as three funerals a week," Holman recalls. "I just saw death after death."

Holman returned from Houston to his hometown of Butte in 1992. But even in Montana, he couldn't escape the virus. His partner of 14 years, Tony Montgomery, died in 1997 from AIDS-related pneumonia at 37.

Shortly after Montgomery's death, Holman began losing weight and developed flu-like symptoms he couldn't shake. At first, he ignored it. When finally he succumbed to an HIV test in 1998, Holman had 27 T-cells; a healthy individual typically has more than 500. Doctors told Holman he'd contracted HIV and that he probably wouldn't live six months.

"The first thing the doctor told me was get my stuff in order," Holman says.

He immediately began taking the immune system boosting medicines prescribed by his doctors. Holman credits those drugs for his longevity. He still takes four pills a day, every day.

Now balding and with a paunch, Holman says his T-cell count is up to 500. He feels good enough, which is important because he keeps a busy schedule. As the executive director of Butte AIDS Support Services (BASS), Holman started conducting HIV outreach in Montana the same year he was diagnosed with AIDS. MTAP hired him as a subcontractor in 2000. He estimates that through MTAP he tested roughly 10 men for HIV monthly. As is the case with the Spotted Eagles, the Rudds, and the other MTAP outreach workers, Holman knows his demographic.

"So many of our clients are very secretive about their lives," Holman says. "A lot of married men test with us on a regular basis, bisexuals. It's just a very, very difficult population to reach."

Also like the other former subcontractors, Holman is watching his supplies run low. He doesn't want to charge for HIV tests and says he'll take measures to prevent any fee. Asking people to cover even the expense of an HIV test—about $15—would create yet another excuse to keep from getting tested.

Although the MTAP cut hurts, Holman insists BASS will persevere. The organization has to, he says. Thirty years after the virus emerged, decimating a generation of gay men, Holman worries that people are forgetting its impact. Despite the staggering statistics—25 million dead across the globe, 33 million more living with the disease—it's not talked about anymore, it's not on television and it's not discussed in schools like it was in the past.

"If we don't educate [young adults]," he says, "we are going to see deaths down the road."

HIV remains a threat in Montana. New infection rates have steadily trended up since 1985 and, as of last year, the state Department of Health and Human Services recorded 445 HIV-infected people in the state.

In 2007, only 35 percent of Montanans between the ages of 18 and 64 reported they'd been tested for HIV, according to the CDC's Behavioral Risk Factor Surveillance System.

Nationally, new infection rates have remained relatively stable, with roughly 55,000 new cases per year since the mid-1990s, according to the CDC. But gay men continue to contract the disease at an alarming rate. In fact, CDC charted a 12.4 percent annual increase in new diagnoses among men between the ages of 13 and 24 who reported having sex with other men between 2001 and 2006.

Health experts say the increase is likely a result of growing complacency fueled by the reassurance of improved HIV drugs. Medicines are becoming increasingly effective, switching a positive test from a death sentence to a life battling a chronic disease.

That's not to say living with HIV is easy. Antiretroviral medicines cause a range of side effects including heart, liver and kidney dysfunction. The meds can also trigger diarrhea, vomiting and lipodystrophy, or fat cell redistribution, which causes thinning of the limbs and an accumulation of fatty tissue at the base of the neck. The latter leaves a telltale sign of HIV—a hunchback.

At least one in five persons living with HIV does not know they are infected, according to the CDC. Forty percent of people with HIV are not diagnosed until they have already developed AIDS, meaning they have a seriously impaired immune system. That process can take up to 10 years from the time one acquires the disease.

click to enlarge Through his work with the Missoula AIDS Council, outreach worker John Neumann mingled among the population most susceptible to HIV: gay men. While at work, Neumann handed out condoms and educated people about the disease and the importance of getting tested. - PHOTO BY CHAD HARDER
  • Photo by Chad Harder
  • Through his work with the Missoula AIDS Council, outreach worker John Neumann mingled among the population most susceptible to HIV: gay men. While at work, Neumann handed out condoms and educated people about the disease and the importance of getting tested.

Newly infected people carry huge amounts of the virus in their blood. Health experts say that unknowing population—the one in five who don't know they carry HIV—is responsible for about half of all new infections.

"If you can get it stopped and get them tested right away, that's the key," Holman says.

John Neumann, MAC's Missoula MTAP outreach worker, echoes the same warning as Holman. Armed with MTAP-supplied condoms, lube and HIV tests, Neumann received an hourly rate—MTAP subcontractors earned, on average, $10.50 per hour—to conduct outreach in sexually charged atmospheres around Missoula. The longtime local regularly navigated porn stores, Internet chat rooms and favored queer watering holes, knowing exactly what to look for.

"I could quickly see when there was a couple that were new, and I also knew which of the young guys were really kind of spreading the oats all around the neighborhood," Neumann says. "Little did they know that that 20 year old that slipped into the bar that is playing the whole innocent Montana boy routine has been with everybody west of the divide. So, my job would be just to go up and introduce myself to these guys and tell them what I do. And, simple as that, it puts it in their head."

Neumann's approach signifies the difference between MTAP education and that employed by mainstream health care. He witnessed the contrast firsthand once when MTAP subcontractors practiced testing scenarios alongside public health nurses.

"A couple of us who had been around a long time with this would often start bringing up scenarios that we knew darn well that these straight women had never thought of," Neumann says.

Specifically, gay and bisexual men aren't necessarily going to talk about sexual behavior with someone outside their community.

"These are the nurses, these are the ones that when they get a guy in their office, the guy is not going to tell this woman what they've been doing," Neumann says.

Now that MTAP's funding is gone, and Neumann's outreach work is over, he wonders whom those men will talk to now—or whether they'll talk at all.

Missoula AIDS Council Executive Director Christa Weathers, once charged with administering MTAP, doesn't skirt the issue: Losing the CDC grant cripples the nonprofit's statewide prevention efforts. What makes the situation even worse is the reason why the nonprofit lost the grant in the first place.

The AIDS Council's board of directors acknowledges an internal problem prompted CDC to deny the grant application. According to a statement from the board released Aug. 30: "It appears that there were some deficiencies in the MTAP grant application that resulted in denial of the Agency's request."

The board says it's taking measures to correct the problem and implementing a more stringent grant screening process to ensure a similar scenario doesn't play out again.

MAC can't apply for the CDC grant for another four years.

Meanwhile, Weathers is left to pick up the pieces. She assumed her position as executive director in February, long after the funding request was submitted. Sitting at her desk in MAC's underground Higgins Avenue office, she fidgets while explaining how the nonprofit will move forward. A thin strip of paper taped directly above her computer screen reads, "Stress is a Choice."

"It's a big deal for Montana," she says. "The impact is huge...But we have every hope possible of providing statewide outreach again."

Weathers says the lost grant exposed MAC's financial vulnerability. In other words, the nonprofit was relying too heavily on one funding source. It's clear now that diversifying revenue streams will be necessary to ensure the organization's survival. Weathers and the nonprofit's board of directors are strategizing ways to bring in additional resources, applying for grants and asking Montana's congressional delegation for help.

"You keep bugging them," Weathers says, "until someone pays attention to you."

Despite Eddie Rudd's comparably healthy lifestyle as of late, he has headaches just about every day, vomits frequently and is losing weight. An annoying "brain fog," not unusual for people with chronic HCV, makes even simple tasks difficult. For instance, he sometimes forgets how to get where he's going and is forced to call his wife for help. Before he got sick, Rudd was never one to sit around. Now when he exerts himself he gets nosebleeds and coughing attacks.

click to enlarge Eddie Rudd is an ex-con and recovering drug addict who tested positive for hepatitis C in 1999. His illness and experiences make him especially equipped to do outreach work with at-risk populations in Gallatin, Park and Madison counties. - PHOTO BY CHAD HARDER
  • Photo by Chad Harder
  • Eddie Rudd is an ex-con and recovering drug addict who tested positive for hepatitis C in 1999. His illness and experiences make him especially equipped to do outreach work with at-risk populations in Gallatin, Park and Madison counties.

"It's no fun to be living with hep C," he says.

Once chronic HCV develops, as is the case with Rudd, treatment becomes even less of an option. Doctors tell him that he's not a viable candidate for HCV therapy. They also tell him that complications from the disease will significantly shorten his life. That prognosis leaves Rudd acutely aware of the urgency involved with his mission to prevent the spread of the disease.

MTAP paid the Rudds' nonprofit $17,000 last year to perform outreach work. Casey Rudd estimates 80 percent of the IV drug users they tested through the program turned up positive for hepatitis C.

With MTAP funding gone, even fewer resources are being devoted statewide for HCV prevention. According to the state Department of Health and Human Services (DPHHS), Montana's general fund contributes nothing toward outreach or testing. The federal government allocates roughly $56,000 annually—$34,000 of that pays for training and technical assistance and roughly $22,000 is used to purchase HCV tests. Those tests are distributed to public health departments.

"We've just recently acquired hepatitis C prevention money," says Judy Nielsen, DPHHS' HIV programs coordinator. "But it's very little. The feds don't invest much money in hepatitis C, which is going to bite us down the road, because there are many infected persons with hepatitis C who are going to end up needing liver transplants if we don't find them and get them treatment."

HCV treatment consists of immune system boosting drugs and antiviral therapy, usually interferon injections combined with ribavirin pills. The drugs fend off chronic liver inflammation in fewer than half of those treated, according to several studies, including a recent one by the Indiana University School of Medicine. Therapy must be administered for at least six months and costs upwards of $1,000 per month.

The Rudds hope they can continue their prevention work so the state's larger treatment expenses never become an issue. An HCV test costs just $40. Even inexpensive tools like those MTAP-furnished "vein care kits" help prevent blood-to-blood contact among users.

But Casey Rudd says she and her husband have now used up everything MTAP provided.

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