March #142 : The Long Haul - by Mark Leydorf

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Table of Contents
 

The Long Haul

Native Soul




The POZ Diabetes Diet Makeover

Quitting Time

Boosting Immunity

Caffeine Fix

Staph Memo

Same Sheets, Different Day

Consider the Alternative




Flunking Math

Test Drive

Stage Fright

The New 90210?

Post It!

Nobody’s Foo

Media Police

HIV 101

Boston Latex

Getting Graphic

Power Surge

Inside the Box

Diagnosis: Stigma




The NAPWA/TAEP HIV/AIDS Policy Report

Mailbox-March 2008

Editor's Letter-March 2008



 
Most Popular Lessons

The HIV Life Cycle

Shingles

Herpes Simplex Virus

Syphilis & Neurosyphilis

Treatments for Opportunistic Infections (OIs)

What is AIDS & HIV?

Hepatitis & HIV


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March 2008


The Long Haul

by Mark Leydorf

America’s 2 million long-haul truckers are entrusted with delivering our meds, clothing and food. Yet federal indifference to their work conditions and health care has put them at risk for HIV—and helped spread the virus across the nation.

Tim Anderson, a truck driver for 17 years, isn’t squeamish about HIV prevention. He let one female sex worker, whose CB handle was “Beautiful Loser,” use his radio to solicit business—provided she first listen to his safe-sex lecture. To the 43-year-old Anderson, sex workers are not some untouchable caste. Yet most truckers, he adds, call them “lot lizards, sleeper creepers, commercial company.” Says Anderson: “These are people, not some category.”

As project coordinator for the Trucker Health Project (THP), launched by the Spokane Regional Health District (SRHD) in Washington state, Anderson has worked tirelessly to highlight the desperate needs of the nation’s 2 million long-haul drivers. According to the National Institute for Occupational Safety and Health (NIOSH), in 2004 the fatality rate for heavy tractor-trailer truck drivers was 4.8 per 100,000 workers, 11 times the rate for the general worker population. Their lives involve brutal hours, wretched diets, displacement from support networks and lack of access to care. In one driver survey, 31 percent said they had no health insurance; 56 percent said they had trouble getting care even when they were home.

Sexually transmitted diseases (STDs), including HIV, are especially problematic for those who spend their lives on the road. No one knows precisely how many truckers are living with HIV, but the sparse research that does exist leaves no doubt that drivers, who live and work in remote isolation under terribly stressful conditions, are at increased risk. Indeed, the road is a culture of risk taking: In one trucker survey, a third of the 71 men interviewed reported that they frequently had multiple sex partners, most commonly commercial sex workers; sex, alcohol and drugs were reported as widely used as “quick, effective stress relievers during downtime on long, lonely trips”; and truckers mistakenly believed they were low-risk for HIV transmission, despite their high-risk behavior.

Given the size of the trucking industry, and the extensive global research showing that mobile populations are key to spreading HIV, one might think this alarm would have echoed coast to coast. It did not. That’s why Anderson, after five years of advocacy (on top of his desk job with an insurance company), shows no signs of burning out. He and the SRHD are, at present, struggling to get funding for a proposed drivers’ health clinic. “We’ve starved ourselves trying to keep this thing going,” says Anderson, who is HIV negative. “We have, like, zero dollars.”

Every scrap of food we eat, every stitch of clothing we wear, arrives by truck, making drivers the country’s circulatory system. Yet they often lose their families, their health or their lives to the road, and the country, as Anderson points out, remains oblivious or uninterested. “There’s nobody out there fighting for the driver,” Anderson says. “Remember 9/11?” asks Anderson. “We lose that many truckers every year on the road. But we’re no heroes. We don’t get a hero’s welcome.”

Anderson thrived on the open road. When an accident left him with damaged optic nerves and unable to drive cross-country, he “asked God what I should do next. And then, in quick succession, three driver friends called to tell me they were positive.” Anderson, who lives with his lover in Washington state on a mountaintop just below the Canadian border, is president of the national Gay Truckers Association. If that sounds like an oxymoron, he has a way of exploding clichés. “Trucking is such a tough job that if you’re out doing it, you instantly get the respect of your peers.”

That respect has helped him in his quest to educate drivers about safer sex and self-empowerment—and to demand more data. In 2001, researcher Yorghos Apostolopoulos, working first at Arizona State University in Tempe and then at Emory University in Atlanta, lunged into the drivers’ world. Armed with a National Institutes of Health (NIH) grant, Apostopoulos and his team talked at length with truckers. Anderson gushes about the Arizona/Georgia research: “It was exciting. He actually had meth dealers in a hotel talking about HIV issues. He was talking to sex workers.”

Alas, the war on culture once again eclipsed the war on AIDS in 2003, when Republicans in Congress derailed the project, along with several other “controversial” NIH studies. Anderson has been trying to get the final results through the Freedom of Information Act but has been unsuccessful. “The researchers were a little naive,” Anderson says. “Political pressure just took it off the rails. Because [Apostolopoulos] was looking at some serious problems in the industry, there was terrific opposition. People think HIV and truckers is a problem overseas, not here. They are pretending that [U.S.] drivers just don’t have sex ever.”

Nevada, where prostitution is legal, cultivates a cozy relationship between truckers and brothels. Says Anderson: “Donna’s Sugar Shop, in Wells, [offers customers] free hot coffee and a warm bubble bath.” As a result, epidemiologists working on prevention among the state’s sex workers have been incredibly successful (though the state recently cut funding, according to Anderson). Elsewhere in the country, prostitution remains in the shadows. “Prostitutes will work rest areas, certain known truck stops, or just hitchhike,” Anderson says. “A lot of them are runaway kids. Or someone a driver hires [at a truck stop] to clean his truck might offer sex for clothing, stuff like that. And of course a lot of it is drug-related.”

Homosexual encounters are also common. “A lot of these guys at home are straight, but they have sex with men on the road,” Anderson says. “They have access to communities they can’t find at home. And, they don’t have to account for their time to the wife.” And straight or gay, “their bodies aren’t in such great shape anymore; they are hungry to get any human touch, so they engage in risky behaviors.”

Anderson is especially frustrated by the “truck chasers,” men who pursue drivers for sex as some sort of masculine epitome. “Talking about health and risk reduction removes the sexy element from pursuit. Web sites and organizations promote [truck chasing], [offering] guides to vandalizing restrooms to make glory holes, guides to seducing drivers. The truth is the truck-chaser community is mostly people with a trucker fetish, not actual truckers. They’re hung up on a masculinity or gender issue. They don’t care about the drivers as people.”

But many drivers play along, with the chasers and each other, engaging in cat-and-mouse games at rest stops. Randy, a straight driver based in Texas who asked that his real name not be mentioned, estimates that he’s been HIV positive for 15 or 16 years. In that time, he says, he has seen it all: “Sure, there are prostitutes. You hear them on the CB; they’ll knock on the door to see if you want company. But that’s never been my thing. I’m too tired, and I’m not gonna spend good money on bad pussy…. And you see guys at the rest areas, but I don’t stop at places like that.”

And what about truckers living with HIV? The Apostolopoulos research showed a high prevalence of hepatitis B and C among truckers, but as for HIV, “we just don’t know,” Anderson says with a sigh. “A significant number are positive and still working, still dedicated to the industry. We know nothing about how driving affects their health. Maybe your case manager is six states away and you’ve got the flu. How are you supposed to stay on meds, get blood work, refills?”

While the Trucker Health Project’s own survey in Spokane could not gauge how many men and women on the road have HIV, it did reveal tremendous stigma. The notion of having meds shipped to truck stops or offering rapid HIV testing at such sites met with stiff resistance. Any HIV-related service “needs to be an all-in-one kind of thing,” Anderson says, or drivers will not use it. Anderson dreams one day of a clinic in Spokane—and of clinics nationwide—dedicated to drivers. Unfortunately, “finding funding is impossible. No one wants truckers as their constituents. Well, whose constituents are they? People are pretty aware when their food doesn’t show up on time.”

Jay Fanning, a driver based in Oklahoma City, has a clearer picture of stigma than most. He tested positive in the spring of 2006 and believes he was infected sometime the winter before through sexual contact. “I was trying to start a relationship with a man…. I hadn’t taken too many chances since my divorce in 2003.” Before he even had a chance to adjust to his new life living with HIV, Fanning’s boss fired him. He’d confided in a coworker about his status, and word got around. Fanning describes all this on the phone from Lawrence, Kansas, where he and his rig were stuck in heavy snow. He’d just learned thathis sick father had passed away hundreds of miles to the south; he needed to get home. Even an average day is challenging enough for Fanning, who has been living out of his truck since October 2006. His mail goes to his daughter’s house; all his stuff is in storage. “I’m 44, been a trucker for 22 years, driven three-and-a-half million miles. I am trapped. I can’t do anything else.”

Fanning did land another job behind the wheel after he was fired, but he also decided to file an Equal Employment Opportunity Commission grievance in Oklahoma County. In the meantime, like many other positive people in many other industries, Fanning feels stuck at his current job because of the health
insurance. He says that his first HIV-med regimen produced side effects—dissociation, dizziness, intense dreams—that caused his production to fall by about 50 percent. “I won’t drive if I’m putting public safety at risk,” Fanning says. “I’m not gonna kill myself for a load of toilet tissue! And if you’re not running the miles, you’re not making money.” Since he switched meds, he complains only about a periodic rash.

Navigating the dating scene as a newly out, gay, HIV-positive man—a challenge under any circumstance—has been especially tough. “I’m on a tight schedule from the time I pick up a load to the time I deliver…. Even if I meet someone online or out somewhere, I’m already gone by the time we’re gonna get together.” Many men in Fanning’s position look for intimacy in the shadows of the industry. “Trucking is very masculine. If word gets out about you being positive or gay, it can be very tough for you.” He has attempted to make contact on the road as well: “Guys out there do take risks. There are guys that cruise the rest areas. I’ll talk to guys, tell them I’m positive, and they take off. But [I feel that it’s] my responsibility.”

Fanning has remarkable forbearance. “We can drive 11 hours, be at work up to 14. You might deliver in the morning, and then have to pick up another load at 11p.m.” Dragging around an 18-wheeler complicates even the most everyday action. “A town might be happy for you to live here, but they don’t [want] your truck on their street. You’re an eyesore,” Fanning says. “The driver is bringing everything, yet he’s restricted about where he can drive, park, everything.” Drivers are segregated in truck stops for weeks at a time. For Fanning, who is also diabetic, that can have toxic consequences: “Everything is fast food.”

But he adds, “No matter what, I’ve always tried to keep a sense of humor. I just go forward every day. Do I blame someone else? No. I should have taken my own precautions.” He has reached out to a few other positive drivers in other states. “So I know I do have friends out there.”

Dawn Michelle, who asks that her last name be withheld, has been surviving on the road with HIV for almost a decade. She telephoned from Riverside, California, where she and her husband had just delivered a load. They were headed back to Texas to pick up something else, and then home to Tennessee, where they live with her father. Dawn is not a driver herself. “I’m the sandwich maker,” she says.

Dawn has been HIV positive for over 20 years, but she is still, as she correctly notes, “not a bad-lookin’ old girl.” She has no idea how she got the virus: “I was a drug user. I did what I had to do to get my drugs.” Dawn celebrated 13 years sober in September. Quitting wasn’t easy: “I was smoking crack in my mother’s car on the way to court.” The judge told her she was facing 15 years if she couldn’t get clean. “And that’s all it took…. When you get up and look at yourself and you look like Uncle Fester—you just say, ‘Dang.’ You know what you got to do.”

Dawn met her husband, a driver for over 30 years, one year after she got clean. He remains negative; they celebrated their ninth anniversary in November. There are lots of couples on the road, Dawn says; if she didn’t ride with her husband as often as possible, she says, she’d never see him: “He’s gone 28 days a month!” But their marriage has not been easy. They have separated several times. “He’s a wonderful husband when he wants to be,” she adds. “He’s kept me going…. He was a miracle. I feared I’d never have another man in my life, everybody was saying I was gonna die. His dream was to own his own truck, and my dream was him.”

But some of the glue keeping them together is economic, too. Dawn’s disability payment of $560 a month is largely consumed by her car payment. She gets medical care and drugs through TennCare, the state’s Medicaid program. The couple’s No. 1 challenge is her need for medical marijuana. Her cocktail makes her extremely nauseous (Marinol did not work for her). And when lighting up on the roadside, she says, “it’s hard to not get into trouble. If I could go live with the president, I could 110 percent prove to him that I need it.” One time when the couple ran out of grass, she was puking out of the window, and a guard pulled them over and offered help. “Thank the Lord, he understood and walked away.”

Dawn’s viral load is undetectable and her CD4s have climbed to 1,387 from 3. “I weighed 87 pounds, I had no hair—I had no hair on my you-know-what.” She has also had hepatitis A, B and C, which she cleared. When asked about finding a cocktail that wouldn’t cause so much nausea, Dawn flinches. She drives three hours to her doctor in Nashville, where she takes part in a study, and she is meticulous about adherence. “If you miss one day you can become immune [to the drugs]. So I am terrified of changing.” On the other hand, “I am so desperately tired of [marijuana]. I’m a Seventh Day Adventist Christian!”  Dawn is careful aways to hit the road with enough meds and a little extra, thanks to an understanding pharmacist. Health care on the road is more treacherous. Once, in Ohio, she broke her foot in seven places. The hospital wouldn’t take TennCare out of state; she had to wait until she got home to get treatment.

What would she like to see on the road? A lot. “Better things to eat. There’s a lot of funky truck stops out here. You see drugs, you see crack pipes, dirty needles. And the bathrooms are miles from the parking area. You’ll see ziplocks and Gatorade bottles full of pee in the lot. And worse. This is the No. 1 industry in the country—and we can’t afford to clean up the truck stops? That’s where we live!”

Talk with Dawn, Fanning and other truckers, and you’ll soon see why, even without the added burden of a chronic illness and intense social stigma, they might want to change careers. As a company driver, Fanning says he averages $600 a week. He starts out with a $100 advance, from which he’s got to pay for meals, showers, gas. Even eating just one big meal a day—hardly a good idea for a diabetic—he barely makes it from paycheck to paycheck. “Plus I have two kids and a grandbaby.” With fuel prices on the rise, Dawn’s husband is hurting too. “Used to be, he could net $2,000-plus a week,” she says. “Now he’s lucky to earn $500 or $600.” Yet he makes too much money to qualify for TennCare. “He’s pulling his own teeth out of his mouth!”

For many drivers, speed—methamphetamine—plays a large part in the tragedy. Texas driver Randy was, like Dawn, a drug user. “I used to shoot up speed,” he says. “I think I know when I got HIV. It was right after I met my wife, I bought an 8-ball, asked [the dealer] if he had a rig, he said, ‘Sure’…. When you got good dope in your pocket, you don’t care if [the needle’s] clean.”

Randy quit doing speed years ago. “That stuff will make you old real quick. I did it three or four years, just when the opportunity presented itself. Now the cons outweigh the pros.” Not all drivers abuse meth to boost productivity—many, like Randy, use it for release. “I never did it at work,” he says. “Hell, I have a hard time with coffee!”

In an Oregon study, 9 percent of randomly tested drivers were positive for controlled substances. Recent high-profile meth-related fatalities on highways in Washington include a driver who died of an overdose in police custody after careening through the streets of Spokane on a high-speed chase. Federal investigators, meanwhile, report that most testing facilities, already poorly overseen, are incredibly easy to outmaneuver with fake IDs and bogus urine products.

Anderson spent some time volunteering with a Spokane needle-exchange program, working primarily with sex workers, and encountered “driver after driver there looking for a hookup.” There is nowhere to go if a driver has a drug
problem: The National Transportation Safety Board keeps a national database that can compound stigma. “If you test positive for drugs, it is reportable. There is a provision for one rehab; afterwards, if you relapse, you face a lifetime exclusion from the industry,” Anderson says. “A friend tested positive for marijuana, and he was out of his career.”

This is a no-go zone for the industry: Some drivers who took part in a prime-time TV special on the meth problem were chased down and beaten up at a rest stop. But there is evidence of it everywhere you go. Dawn describes spotting high drivers at fuel pumps: “You can smell it [crack or meth] when they walk by. We’ve seen them sitting in their trucks with their shirts off just rocking. Scary.”

Randy, meanwhile, says that he has no bitterness about becoming infected with HIV: “Can’t go back with ‘what ifs.’” He has a son from a previous marriage and a couple of grandchildren. His wife remains negative; their relationship is strong. “I don’t get to see her often—that’s probably why we’re still married!”

He has taken every imaginable drug from AZT on. He was fortunate enough to be able to take two and a half years off during the advent of protease inhibitors. “When [they] came out, every time I turned around I was puking my guts out. I said to my wife, ‘We’ve got some savings, I just need to stay home, and get my numbers up.’” With a schedule now that has him on the road for three weeks and then home for five or six days, Randy is luckier than most. He is able to order his meds when he gets home each month. He also swears by medical marijuana: “It does work. Don’t know why the government can’t see that.”

Today Randy takes a combo he tolerates pretty well. “At one point a few years ago, I was doing a lot of night work, and [the meds I was taking gave me a] fuzzy feeling—not so good on the road. Now I’m on a more human-like schedule.” His triglycerides are “through the roof,” but otherwise he is in good shape. “I got little skinny bird legs and a nice trucker’s gut. I look real good in the summer,” he laughs. “But I’m not worried about impressing anyone.”

Living on the road “is a lifestyle,” Randy says. “We’re a special breed. I live in my truck sleeper. I got a laptop computer, a TV with satellite. Just need a bathroom and a shower.” The hard part is the stress and the bad food. “Places will put healthier choices on the menu for a while, but no one ever orders it, so they discontinue it.”

Both Randy and Dawn found strength early on from giving talks about HIV at schools, proving that even loners long for connection. “I wanted them to know how it happened, and how it just shouldn’t happen,” Dawn says. The first time, “I asked if any of them knew anyone with HIV, and no one raised their hand. Then I said, ‘All of you put your hands up. You all know people with HIV.’ They were stunned.” Dawn starts crying recalling one last detail. “When I was done, this little 9-year-old girl put her hand up and said, ‘Can I come give you a hug?’ And then they all just lined up to hug me. I guess I got to every one of them.”

Randy says that he wondered, “Did I make an impact? My problem is that I can’t think of enough negative things to say about it! It’s been a positive experience, pardon the pun. Met a lot of diverse people I wouldn’t have otherwise run into.” Finding other HIV-positive drivers has proved nearly impossible, however. “Jay Fanning was the first positive trucker I talked to,” he says. “I got on a trucker’s bulletin board right after my diagnosis, but I never got any response. Back in the day, shooting up speed was the way to do it—odds are, there’s more than just me out here! Then six or seven months ago, there he [Jay] is. I heard him on a radio program, contacted [the show] and got his number. We talked a few times…” Stigma on the road is a powerful disincentive for disclosure. “A week or two later I was with some other guys, waiting around to load up, and one of ’em says, ‘I heard one of them silly fag boys on the radio talking about AIDS…’ And I just kept quiet.”

For people like Tim Anderson, Dawn and Randy, the road will always have an allure. Dawn loves the peace. “It’s like a constant movie. I just sit back and watch…. I love being on the road better than my husband, better than my Dad.”

More and more, though, America’s truckers are martyrs to their wanderlust—and to our toilet tissue and cornflakes. “When it’s going right, the truck is running right, you’re in the Rockies, you found someone cool and you’re running down the road together on the CB—it’s the best job in the world,” Anderson says. “Truckers are passionate about it. I wish that the country felt the same way about them.”


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  comments 1 - 5 (of 5 total)    

Hemophilia's late wife, Texas, 2008-07-26 00:11:14
I've been positive for almost 23 years. Team driving with husband for 9+yrs. My late husband died from complications to his hemophilia due to infected plasma in the early 80s. My present husband is negative. Our income is such that we don't qualify for extra help. We have to be company drivers to get health insurance to help pay for my meds. I learned that I must continuously keep health insurance; pre-existing clauses can take 1-2 yrs before benefits pay.

bearby, birmingham, 2008-03-15 14:24:43
I got a feeling for those people and what they had to say big time . I know of what they spoke of about getting meds and being able to take them on time beacuse as the long time partner of a trucker I have ridden with him on occasion and had to always have my meds plus extras to ensure that I had enough to make the week or so long trip worth the companies while . I was diagnosed as poz back in 1986 and then with aids in 2001 to which my partner lost his job ( more to come later ) .

MJ, Atlanta, 2008-03-05 23:27:47
Rambling, lacked a central idea, and did not correct Anderson's stat about trucker mortalities (3,000), even though the article itself offered a different one (96) if you just calculate it. Initial premise, "federal indifference [leads to] truckers' HIV" was not proven.

Everythings410, Springfield, MA, 2008-03-01 18:28:16
Very good article! I am not a driver but I worked closely with drivers for all most 10 yrs in food distribution. I have been poz for 15 yrs. It seems like there should be enough volunteers across the country in each state, that are trustworthy enough to be able to get meds and meet the drivers at the truck stops. Thier jobs are stressful enough without having to worry about adherance. Stress is the last thing any of us needs. I'll be the first to volunteer in Western Mass

Mac Driver, Sacramento, Ca, 2008-02-28 18:58:39
Good column! People,gay or straight,poz or not,have not a clue were there favorite must have comes from or how it got there. Let alone the driver of the truck they gave the middle finger to because the truck was in there way to starbucks. What was forgotten in the column,truck companys what to save money,so cheap health insurance is a must,and the driver pays more for drugs and co/pay,I had a my hrs cut,without notice,and I could not afford my hiv drugs,after 6yrs of use,I lost,& no help.

comments 1 - 5 (of 5 total)    

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