REMEMBERING JEFF PALMER OCTOBER 3rd, 2005
Les militants dAct Up-Paris
Association do lutte contre le sida déclarée le 26 07 1989 (loi de 1901) SIRET 394 895 00025 APE 913E
from THE BODY
In Memoriam: Jeff Palmer, Pioneer in Rural AIDS Activism
August 24, 1946 - October 3, 2005
October 12, 2005
Jeff Palmer, the founder and director of Wyoming: Positives For Positives and an AIDS activist, husband, father, grandfather, and friend to many, passed away at the age of 59 on Monday, Oct. 3, 2005 at Memorial Sloan-Kettering Cancer Center in New York City. His wife Catherine, his sister Joan and his mother Shirley were among the family members taking care of him during his last days.
Jeff had been living with HIV since the mid 1980s; he also had hepatitis C. In 2004 he was diagnosed with metastatic tongue cancer, and spent the last year shuttling back and forth between his home in Cheyenne, Wyo., and New York City to receive chemotherapy and radiation treatments at Memorial Sloan-Kettering.
Jeff was born and raised in Chicago, but spent a lot of time in New York City. He served with the U.S. Air Force in France for several years during the 1960s, and eventually settled in Cheyenne in the late 1980s.
Jeff founded Wyoming: Positives for Positives in 1993 to help address the needs of HIV-positive Wyomingites. He was a staunch advocate for more effective HIV care, treatment and prevention, as well as the education of healthcare providers in his predominantly rural adopted home state. He was a pioneer in advocating for the rights of people living with or at risk for HIV in Wyoming; his efforts addressed the entire at-risk community, including those who were incarcerated or who battled drug addictions. He was never afraid of a good fight when people's needs hung in the balance, and he won a great many more than he lost.
Jeff will be remembered for his tenacity and his dedication to improving the lives of the people with HIV in his community, as well as those who lived thousands of miles away in places like southern Africa.
Most of all, though, Jeff will be remembered for his honesty, his friendship, his modesty and his selflessness; he spared nothing of his own comfort or time in helping others live longer, healthier and happier lives.
Jeff Palmer's mother, Shirley, said that she raised her children with a simple mantra: "We're not put on this earth to go merrily through life for ourselves." Clearly, Jeff took his mother's words to heart in his dedication to the global HIV community.
There may be no better way to show Jeff's commitment to the empowerment of others to live, cope and thrive with HIV than by sharing his own words. Jeff entered this in his personal diary while in Paris for the 2003 International AIDS Society medical conference:
We need to deal with each other and with ourselves about our own fears about being stigmatized. We're not going to survive otherwise. Where people are surviving, where people are obtaining access to treatment, the first act of courage is getting tested, and then the next act of courage is doing something for yourself with that information. That's not the end of the courage it's going take to survive with this disease. It's always little moments of courage. There's going to be moments of courage where you tell your family, there'll be a moment where you tell your friends, there's going be moments of courage for some of us where we tell our parliamentarians. There's always moments of courage for us as people with HIV; it's an opportunity for us to live a courageous life, and sometimes we don't want to do that, and that's always going to be a choice.
Jeff leaves behind his wife Catherine, an activist with Act Up-Paris whom he met at the Conference on Retroviruses and Opportunistic Infections in Boston in February 2003. They were married on April 23, 2004 in Paris. Jeff also leaves behind a daughter, Stephanie; three grandchildren, Elaina, who is 17, Lyane, 5, and Zachary, 2; his mother Shirley; his brothers Mick, Tim, Sean; and his sister Joan.
Thanks to Tim France, Ph.D., Director Health & Development Networks, Chiang Mai, Thailand for finding this quote in one of Jeff's newsletters.
Out there, you have to travel all day to get to a decent doctor.
If your neighbors find out, you could be run out of town.
Your only HIV positive buddy was diagnosed in the ER.
Welcome to AIDS in the heartland.
Jeff Palmer half-suspected he was HIV positive in the mid-'80s, when doing time for robbing a Wells Fargo Bank. He had shot up drugs and was having health problems and weight loss. But the federal pen wasn't exactly a friendly place to get tested. "At that time there was a lot of ignorance and fear, and that led to violence," Palmer says. "I saw people who were suspected of being positive coming out on stretchers or in body bags." The Chicago native was released in early 1989 for cooperating with authorities and ended up in the witness-protection program -- in Cheyenne, Wyoming (pop. 53,011). There, while working the rails for Union Pacific, he tested positive. Palmer eventually went on to found an AIDS advocacy group, Wyoming: Positives for Positives, out of the back of his trailer. But it was two years before he met another person with HIV.
More than 47,000 Americans with HIV live in rural areas -- defined as any place with fewer than 50,000 folks. That's fewer than 10 percent of the nation's total, but many of them remain as isolated as Palmer was in Wyoming 10 years ago. Nearly half, according to a 2000 study in The Journal of Rural Health, returned home after testing positive in the big city; others got HIV right in their hometown, proof that the virus has found its way into the heartland. With sex education less common in rural areas, and only 60 percent of rural teens using condoms, a little HIV can go a long way. A study published in April in The American Journal of Public Health found that African-American women in rural areas were twice as likely as their urban peers never to have used condoms. In other words, the misconception that small towns are safe from HIV has ensured that they are not.
For HIVers in the hinterlands, it's still the bad old days of AIDS. The chances of finding a doctor who knows the basics of HIV management may be slightly better than in the '80s, but by every measurement of health -- from access to testing and treatment to rates of sickness and death -- city slickers have it much better than their country cousins. A federal funding formula that prioritizes AIDS epicenters, combined with rural state legislatures hostile to or ignorant about AIDS, leaves little in the way of resources in all but the most exceptional states. A 2001 federal study found that while three-quarters of urban HIVers in a physician's care were on HAART, little more than half in rural care were. When you add the number without a doc, rural HIVers are, on average, three times less likely to receive HIV meds than positive urbanites.
Country folks often avoid medical care, or even getting an HIV test, until they're very ill. Or they travel two or three hours for doctor's visits -- all to protect their place in communities where confidentiality is as fragile as AIDS stigma is powerful. Not that they have many health-care options. Only one in 10 U.S. doctors practices in rural areas. A 1998 study found that nearly a third of Utah's doctors said they would break the law by turning away a person with HIV -- likely frightened, says Palmer, "that they'd scare other patients away." Of those who would deign to treat, most lack experience and expertise in the fast-changing art of HIV care. According to a 2001 federal study, 38 percent of rural HIVers were seeing doctors who had treated fewer than 10 patients with the virus -- hardly a strong track record. (Only 3 percent of urbanites had docs this green.) "These are mostly family physicians, and they just can't provide the level of care that people with HIV need," says Beth Stringfield, executive director of the Piedmont HIV Health Care Consortium in Durham, North Carolina (pop: 187,035). "They can sometimes do the first round of antiretrovirals, but as soon as someone starts to reject their first combination, and you have to get into the technical side of treatment, they generally don't have the expertise."
When Palmer first arrived in Cheyenne, newly diagnosed HIVers were routinely referred to family-practice clinics where, he says, doctors in training were "on such a learning curve that it was a disservice to their clients." Working with Positives for Positives, Palmer intervened: He identified the two doctors in the state who had substantial HIV experience and upended the county referral system. Now, he says, these two docs -- one in Cheyenne, the other 180 miles away, in Casper -- "are probably treating the bulk of HIV clients in the state."
Many rural health-care professionals also seem not to know or care about the social consequences -- for HIVers -- of disclosure, casually violating patients' privacy in small towns where there's, say, one doctor to write prescriptions and one pharmacist to fill them. On eastern South Dakota's remote Yankton Sioux Reservation, such breaches of confidentiality have devastated several HIVers, says Charon Asetoyer, executive director of the Native American Women's Health Education Resource Center. Witnessing their community turn people with HIV into pariahs has discouraged others from seeking testing or care. "It's especially hard when your neighbor or someone in your family works at the clinic," Stringfield says. "It really cuts off the options that you have."
With HIV-savvy doctors so far-flung, a routine checkup can be a full-day affair. Michael Christensen, who lives near Pocatello, Idaho (pop: 51,466), has been traveling 162 miles to see his doc at a Salt Lake City VA hospital for 15 years. It's wearisome but worth the trouble. "We really don't have many knowledgeable doctors," Christensen says. "Even in areas where we do, people with HIV are reluctant to access local health care because they don't want their families to know." Instead, like Christensen, they hit the road, often traveling to other states for care. A surprising number of HIVers who came home to the country invest considerable time and expense to fly back to their city doctor, and have their old urban pharmacies mail their meds.
The Rural Rundown
|86 Average number of miles HIVers in the rural South have to travel to see an infectious-disease doctor
80 Percent of increase in rural AIDS cases from 1991 to 1995
70 Percent of HIVers in the rural South who are African American
66 Percent of high-risk exposures to HIV that occur in rural areas
60 Percent of Southern women with AIDS who were infected through hetero sex
59 Percent of rural HIVers who reported moderate or severe levels of depression
50 Percent of rural HIVers on HAART who reported having missed one or more doses in the past week
38 Percent of rural HIVers who considered suicide in the course of one week
10 Percent of HIVers in the rural South who were refused care by a physician
Research Assistance: Adam Bible, Josh Sparber
Lost in the Woods?
For nationwide referrals for rural HIV care and support, call the Minnesota Rural Aids Action Network: 800.966.9735 or www.raan.org. Or browse state-by-state listings of AIDS service providers at www.thebody.com.
To find a qualified rural doc, contact the National Rural Health Association: 816.756.3140 or www.NRHArural.org/providers/HIV-Dir.html . Or contact the federal Health Resources and Services Administration (HRSA) at 301.443.0835 or www.ruralhealth.hrsa.gov for a directory of state offices of rural health.
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