County Boosts Services to Meet AIDS Challenge : Medicine: Government officials have added an immunology clinic, a drug program and case management.
The news that forever changed his life came in a phone call, Mike recalls. A doctor he had seen for leg surgery was calling to say Mike had tested positive for the virus that causes AIDS.
“I hung up the phone and started trembling,” said Mike, a Ventura County resident who asked that his full name not be published. “I was in a panic. I was totally in despair.”
He had watched a friend in Santa Barbara die of AIDS, and he considered the positive test result “a death sentence.”
But then he discovered AIDS Care, a Ventura County social service organization. Through AIDS Care he learned about support groups for people who have AIDS or who carry the AIDS virus. Through a support group he learned about the immunology clinic the county was about to open. And through the clinic he got the drugs, professional attention and confidence that he credits with keeping him healthy in the two years since that fateful phone call.
“I hadn’t been aware of all these resources here,” Mike said.
Until a few years ago, there weren’t many resources for Ventura County residents with AIDS or with the AIDS virus, say patients, physicians, public health officials and social service workers.
Even now, after more than 100 county residents have died of the disease and an unknown number have contracted the AIDS virus, “people are still blind to the fact that AIDS is an integral part of Ventura County,” said Marjorie Richey, a nurse-epidemiologist in Thousand Oaks who conducts two AIDS support groups.
But despite a lack of public awareness about AIDS, “the county has done an extremely good job of answering the call,” said Ken Trupp, an AIDS Care board member.
Claire Connelly, head of the Ventura-based Gay and Lesbian Resource Center and a counselor to AIDS patients, agreed. “Four years ago, there was nothing,” she said. “At the present time, the level of services is very good compared to other areas.”
In recent years, county government has established:
* The immunology clinic, which treats AIDS patients and people who carry the virus but have not yet developed symptoms. Officials say a patient can get into the clinic within two weeks while similar clinics in Los Angeles County have waits of up to five months.
* A federally financed program to provide low-income patients with drugs that delay or prevent AIDS-related illnesses.
* A case-management program that helps patients maintain jobs and housing and get social services.
* An AIDS task force that brings together people from various fields who deal with the disease.
The task force is working on a comprehensive AIDS plan to address a number of needs that officials say still remain.
For example, as the number of cases has increased, officials say, so has the county’s need for affordable housing for AIDS patients, many of whom cannot work. As more patients enter the final stages of the disease, health-care workers say, the lack of a hospice in the county is becoming a serious problem.
And despite improvement in AIDS education, the county has no program specifically targeted at homosexuals and has not done enough to reach some segments of the Latino population, representatives of those communities say.
Like county government, the private sector also has responded to the AIDS problem without much fanfare.
AIDS Care, incorporated in 1986, had its best fund-raising year ever in 1990, board chairman Joseph Rund said. Two events last summer raised a total of $16,000, and the group attracted contributions of $5,000 from the Aetna insurance companies, $4,000 from Pacific Bell and $3,000 from Northrop Corp.
In July, AIDS Care was one of only two new agencies to get a grant from United Way of Ventura County, which allocated $14,000. In December, AIDS Care hired a full-time director.
“We felt they should be funded because they’re dealing with an important concern in our community, and doing it in a very cost-efficient, humane way,” said Colleen Hunter, United Way’s executive director. She said the allocation committee was especially impressed by AIDS Care’s use of volunteers.
AIDS Care officials give much of the credit for the growth in AIDS services to Christopher Dye, a former president of the group who died of the disease last year. A county-sponsored AIDS symposium on Feb. 9 will be dedicated to Dye.
“The volunteer agencies have gone from storefront, grass-roots operations to being highly dedicated, thoughtful organizations that are really accomplishing things,” said Dr. John G. Prichard, who runs the immunology clinic. He said the clinic has logged nearly 700 volunteer hours since it opened in July, 1989, at Ventura County Medical Center.
“We simply would not be able to deliver the service we do without the volunteer effort,” he said.
The clinic is open half a day every two weeks but soon will expand to a full day. Last Tuesday, it saw 22 patients.
“I think we’ve been very successful at keeping people out of the hospital,” Prichard said. “That’s the key to managing patients with HIV disease, to keep them well.”
Avoiding hospitalization not only saves the county money, he said, but helps patients maintain their homes, jobs and insurance coverage.
“You can look at the hospital in many cases as unavoidable,” Prichard said, “but in others it represents a failure to get to the patient early enough with preventive treatments, of which there are many.”
Mike, who is self-employed and has medical insurance, said he has “no financial worries,” and could go anywhere for treatment. He has chosen the county clinic because of “the confidence that John and the clinic staff have given me . . . I’ve realized that this is not an instant death threat.”
About 45 clinic patients who aren’t insured and who meet certain income limits are in a county program that provides free AZT, a drug which slows down the AIDS virus, and pentamidine, which helps prevent a form of pneumonia called Pneumocystis carinii, a life-threatening complication of AIDS.
The program, administered by the county with federal funds, costs about $6,000 a month, said Diane Seyl, the public health nurse who administers it.
The case-management program currently has 23 clients, the most ever. Public health nurse Roberta Pak-Young handles the program single-handedly but soon will be joined by a part-time aide.
Pak-Young said one of her main roles is helping AIDS patients maneuver through the bureaucracies of private insurance companies, Social Security, state disability and other programs.
Bobby, a 35-year-old Ventura man who has had AIDS for two years, said Pak-Young helped get someone to clean his house under a county program. She often refers clients to AIDS Care, which provides “buddies” who help with such things as grocery shopping, bathing and other personal needs.
“You call anywhere you can that you think will make things work out best for the client,” she said. “It sounds like I’m babying these people, and I guess in a way I am. But it’s too bad more people can’t have that kind of service who need it.”
She often refers people to support groups that help deal with the trauma of an AIDS or HIV-positive diagnosis. Dr. Brian Goldman, who leads a group in Oxnard, said participants talk about both the psychological and practical aspects of the disease.
“They come and share what’s going on in their lives, the frustrations of dealing with the system,” Goldman said. “They share tricks on how to do the paperwork.”
Richey, who directs two groups, said they usually focus on different topics.
At her Los Robles Regional Medical Center group, she said, “They talk about insurance--quite a bit about that--not being able to work, lack of money, whom should they tell and not tell.”
The other group, which meets in her home, “is more of a friendship group,” she said. “They do talk about symptoms, what symptoms the medicines help, which ones they make worse.”
But for some people, a support group is just an unwanted reminder of their HIV status, Goldman said. “A lot of people will come one time to the group, but since they are not symptomatic, there’s not a great pressure to confront it.”
Kurt, a 34-year-old Ventura County resident who tested positive for HIV more than four years ago, said he attended just one session of a support group. “I’m really not one to offer all kinds of information about myself, how I feel,” he said. “I found it was a downer for me. I left there thinking I was going to die.”
Mary, a health-care worker who was infected by AIDS-contaminated blood in an operating room, said she also finds the groups “a downer.” Several people she met when she used to attend a group have died, she said.
“I try not to let it affect my daily life,” said Mary, who is in her mid-40s and lives in east Ventura County. “I figure I’ll be around for awhile.”
She does not expect researchers to find a cure for AIDS, but believes they will continue to find ways to manage it, such as they have with diabetes.
She gets annoyed, she said, when she hears AIDS discussed as a gay disease. “I hope people don’t have their heads in the sand,” she said.
Homosexual men make up about two-thirds of the people with AIDS in Ventura County, but women and intravenous drug users are accounting for an increasing proportion of the new cases, officials said.
Martina Rippey, a public health nurse who heads the AIDS Task Force, said only eight cases of AIDS in the county have involved women, but five of those have occurred in just the past three years, and many more women are infected with the virus.
The 38 new cases diagnosed in Ventura County last year equaled the record one-year high set in 1988 and were four more than reported in 1989. But Prichard said the figures may falsely suggest that the epidemic has peaked. Instead, he said, AZT and other drugs are simply delaying the onset of the life-threatening diseases that characterize AIDS.
“Many epidemiologists are predicting a second wave of the AIDS epidemic,” Prichard said.
As more Ventura County residents reach the last stages of the disease, AIDS workers say, more of them will need a place to die.
“What we don’t have is a hospice,” said Seyl, the nurse who runs the county drug program. In the past few months, she said, three Ventura County AIDS patients had to go to Los Angeles County for hospice care.
Ventura County has several hospice organizations to help dying people and their families, but no facility to care for them. What’s more, extended-care facilities in the county have been reluctant to accept AIDS patients, Pak-Young said.
“We try really hard to keep these people in their home, or with loved ones so they can die at home,” she said. “But they don’t always have families, or their families aren’t supportive.”
The county also lacks AIDS educational materials for poorly educated segments of the Latino population, said Maria Luisa Jimenez, a health educator for Clinicas del Camino Real, a nonprofit health-care agency.
“There are plenty of materials for people who read and who watch certain kinds of programs,” said Jimenez, who often does AIDS seminars for adult education classes but wants to do more outreach in migrant camps. “There’s a lack of materials that are more simple. What we have is sometimes over their heads.”
Virtually everyone involved in the county’s AIDS community has to deal with death.
“Last month, there were eight clients I knew who died, two on the same day,” Pak-Young said. “When that happens, I find myself feeling tired.
“But for the most part I find this very rewarding--the reward of knowing I helped as much as I could.”
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