Archive for Sunday, March 31, 1991

DEALING WITH THE AIDS EPIDEMIC

March 31, 1991

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David Douglas learned four years ago in New York City that he was infected with HIV, the virus that causes AIDS. Planning a trip to India, he visited a physician for travel vaccinations and had a blood test that came back positive for HIV human immunodeficiency virus.

AIDS is a fatal disease that causes the body to lose its natural protection against infection. A person can test positive for HIV without having AIDS, but once infected he or she can transmit the virus to others through unprotected sex or by sharing intravenous drug needles. Pregnant women also can infect their fetuses.

Today, the 32-year-old Douglas said he's still healthy, although he is nearing the time when many people who test HIV-positive begin to show signs of ill health associated with a progression toward AIDS.

A KANSAS UNIVERSITY graduate, Douglas makes his home in Lawrence now, working as an actor with the "Seem-to-be-Players" and defying the virus with positive mental visualizations and a healthy lifestyle.

He also has become a volunteer building community support for AIDS education and a more extensive care network for local people who are HIV-positive or have AIDS.

As a member of and volunteer with the Douglas County AIDS Project (DCAP), Douglas is part of a support effort that focuses on local residents but also has ties with other Kansas efforts to fight AIDS.

DCAP is an all-volunteer organization that sponsors a buddy program, matching trained volunteers with clients, and support groups for clients and their loved ones. It also offers limited emergency financial aid and provides speakers to local groups interested in AIDS information.

DOUGLAS ALSO is a member of the Lawrence chapter of ACT UP AIDS Coalition to Unleash Power. Through that group, he is working to spotlight the need for AIDS education for teen-agers. Statistics show that many people who are HIV-positive or who have AIDS were infected with the virus in their teens.

ACT UP Lawrence is patterned after ACT UP New York, with which Douglas also was associated. Members of the activist group, including Douglas, have been arrested on occasion for their efforts.

"This virus has, in a lot of ways, empowered me, made my life better in a lot of ways, given me more focus," Douglas told an audience of social workers meeting recently at Kansas University.

He added that he has a very low tolerance for ineptness and insensitivity, "and actually, I like that. I think we should all have a low tolerance. . . ."

A HOMOSEXUAL, Douglas said he had been sexually active in New York. He was doing volunteer work with the Gay Men's Health Crisis there when he tested HIV-positive.

Since returning to Lawrence in August, he said, he has felt more comfortable about going public with his HIV-positive condition than he ever did in New York despite a few jeers during recent awareness walks and Persian Gulf war protests.

As a DCAP volunteer, Douglas said, he tells his story to many groups and "the community response has been fabulous."

"Something like AIDS tests a community," though, he added, "and I think it will test Lawrence a lot more."

DOUGLAS SAID he sees many disturbing parallels between Lawrence today and New York in 1982. Back then, he said, New Yorkers were saying AIDS wasn't "that big a deal;" today hospitals there are full of AIDS patients, and people must wait hours to receive emergency health care.

"It's happening all over again," he said of the local situation, "but (this time) I think it can be stopped. Lawrence and Kansas still can do a whole lot to avoid the problems New York has now."

Education is the answer, he said, and through DCAP, he works with other key players trying to help the community in that regard.

Among the DCAP workers are Donna L. Flory, a social worker who is co-chair with Dennis Saleebey of client services, and Ann Ailor, a registered nurse who is coordinator for HIV-positive and AIDS counseling and testing sites for Lawrence-Douglas County Health Department.

FLORY AND Saleebey coordinate DCAP financial assistance, the buddy program and support groups.

A KU graduate student in social welfare and a staff member of the KU Psychological Clinic, Flory also recently was co-recipient with Lawrence resident Tom Harper of the Margo Schutz Award for first-level, outstanding practicum students. Both were recognized for work with HIV-positive and AIDS programs.

Flory's award was for her DCAP efforts. To date, she said, she has worked with 21 individuals who are either HIV-positive or have AIDS, and she handled nine requests for support from family or friends of infected persons.

Two of the clients she has worked with have died, she added.

"It's real hard to lose people you've become attached to," Flory said, but overall, working with HIV-positive and AIDS clients has proved far less stressful than her previous work. For 15 years before returning to KU in 1989, Flory was a social worker in foster care and children's protective services for the state Social and Rehabilitation Services.

A DCAP BOARD member since the fall of 1989, Flory said that group is trying to look at future needs in Douglas County.

"In the whole scheme of things, we've really done a lot in a year, but only a tiny bit of what needs to be done."

Ailor works cooperatively with Elaine Houston on AIDS for the health department, 336 Mo. Houston is coordinator of HIV-positive and AIDS education, and both women regularly speak to community groups about the local situation.

In addition to anonymous testing at the health department, Ailor said she also runs a satellite clinic at KU. The pilot project, in Watkins Memorial Health Center, aims to serve students who wanted anonymous testing on campus but couldn't get it through the university, which keeps records by student ID numbers.

AILOR SAID persons interested in being tested can call the health department or Watkins.

Those tested are counseled during their initial visit, and if the test result is positive, Ailor follows up with specific recommendations based on individual needs. She also informs them about DCAP.

"The most important (recommendation) is counseling," Ailor said, noting anyone adjusting to the news of a positive HIV test result needs someone supportive with whom they can talk.

She also talks with them about partners and how best to prevent the spread of the virus, and she recommends further medical tests and some protective vaccines such as seasonal flu shots.

One of the DCAP buddies, who is HIV-positive himself with some symptoms of illness and did not want to be publicly identified, said local people who have tested positive or been diagnosed with AIDS are concerned about the lack of specialized medical care for them here.

"THIS IS an epidemic," he said. "It's not like heart disease or cancer."

A bisexual man, he said many people he knows arrange care in Topeka or Kansas City with physicians who have been identified as willing to serve AIDS patients by such groups as the Topeka AIDS Project (TAP).

Jay T. Johnson, director of clinical services for TAP and a Lawrence resident, said adequate medical care is a growing problem, with reporting rates estimated at only 50 to 60 percent of the actual number of cases.

Johnson, who is to receive his master's degree in social work from KU in May, said he is working to get a regional, free clinic established through state channels, and targeting early intervention as the best treatment approach.

JOHNSON, A Native American, said that in Lawrence among minority groups, he is familiar with the efforts Haskell Indian Junior College's clinic has taken to educate its students.

Staff members there, he said, "are making tremendous efforts in this field."

Generally, though, Johnson noted, many primary care physicians in Kansas are reluctant to become educated about HIV-positive and AIDS treatments.

With the "it's not here" mentality so prevalent, he added, everyone should be asking their physicians and dentists whether accepted "universal precautions" are in place to protect patients from infection by the virus.

THE ANONYMOUS DCAP buddy said he wishes that at least one primary care physician in Lawrence would become an AIDS specialist and that Lawrence Memorial Hospital would open a virology clinic with staff trained in AIDS treatment.

He noted that a complicating factor in terms of such developments is that most people who are HIV-positive or have AIDS do not have insurance.

Currently, he said, the only financial aid available to them, with the exception of those who qualify for SRS assistance, is from DCAP, which only has limited resources in that area.

Ailor noted that because of the increasing number of cases locally, primary care physicians in town eventually will become more involved with such patients. They probably will work more in consultation with specialists in Topeka and Kansas City, who simply won't be able to handle all the cases alone.

"IN THE LAST two years," Ailor said, the number of people testing HIV-positive here has "gone up appreciably."

In 1987, she had three positive tests out of 265. In '88, 362 were tested and two were positive.

In 1989, of 320 tested, six were positive, and in 1990, of 392 tested, 9 were positive.

Overall, she said, Douglas County has reported 12 cases of AIDS; of those, eight patients have died.

Statewide, from July to December, Ailor added, 108 people were reported as testing HIV-positive in Kansas, and four of those were from Douglas County.

Of the 108, Ailor said, 32 percent were people of color, 11 percent were female, 4 percent were teen-agers and 5 percent were in their 20s.

In 1985, she adds, most of the state's AIDS cases were "imported" people contracted the disease elsewhere and then came to Kansas to live. Today, only half of the cases fit that description.

MANY PEOPLE also think most AIDS cases involve homosexual men, but Ailor and others working with DCAP said that is not the case.

To date, Ailor said, she has tested about as many women as men and "my positives haven't all been gay." Less than half of DCAP's clients are homosexuals.

Flory's co-award recipient Harper, another DCAP buddy, is working with Kansas City, Kan., parolees, some of whom were IV drug users, on AIDS education.

His award-winning work with the parolees involves mental health counseling and education about HIV and AIDS, as well as other sexually transmitted diseases.

In addition, Harper said he is doing staff education with parole officers in Wyandotte, Leavenworth and Johnson counties, and working to develop a statewide policy on how HIV-positive and AIDS parolees are handled.

Of particular concern, he said, are people who test positive for the virus but continue behavior that puts others at risk for infection.

His goal, he said, is to complete the policy by the end of his practicum in May.

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