COVER STORY : Closing the Gap in AIDS Care

Increasing awareness of the spread of AIDS and need for services is giving those facing the disease in North County new hope for finding emotional support and medical care closer to home.

It has long been necessary for those with acquired immune deficiency syndrome to travel to San Diego for many needed services.

As Lee Berchak, a North County medical social worker, put it: “We’re kind of out in the boonies in terms of services.”

In recent months, though, efforts to improve care in North County for the men and women diagnosed with the disease and those close to them have met with some success. But, despite the advances, much remains available only at a distance.

Among the realities:

* People diagnosed with the AIDS virus who need caseworkers to guide them through the required procedures and support services can wait as long as two months at health or social service agencies in North County. Some give up and go to San Diego where the wait may be only a few days.

* Until the last few months, those with the AIDS virus, their families and friends throughout North County had just one support group, in Vista, where they could meet to discuss the traumatic change in their lives. Recently, four new groups have been added.

* People needing free AIDS drugs through a federal program had to travel to the county’s only dispensary near the San Diego Sports Arena. That will change next month when the Vista Community Clinic begins dispensing the medications.

* For those in advanced stages of AIDS who cannot live on their own, there is a residential care facility, Fraternity House in Oceanside. The tract house in a new subdivision has room for nine residents.

* No publicly funded medical facilities in North County have physicians who deal entirely with AIDS cases. Specialty care still requires trips to San Diego clinics.

* Hot-meal delivery programs, food banks, legal services, information services for people with AIDS--all available in San Diego--have been absent in North County.

* Despite the need for trips to San Diego, transportation services have been limited to a single van provided by the San Diego AIDS Foundation, often forced to take a lengthy, serpentine route to pick up and deliver its passengers.

Although health officials do not know how many men and women are infected with the AIDS virus, there is agreement that the impact of the disease will be increasingly felt in North County.

Authorities estimate that from 25,000 to 30,000 people in San Diego County test positive for the human immunodeficiency virus. They say perhaps 10% of these live in North County.

In the last 10 years, according to county Department of Health Services figures, 255 of the county’s 3,067 people diagnosed with AIDS lived in North County--about 8%.

Of the 255 cases, roughly 100 North County residents still survive, said Binnie Callender, chief of the county’s Office of AIDS Coordination.

The region’s primary AIDS medical facility, the Vista Community Clinic, draws clientele from Carlsbad to Ramona. The clinic currently has 85 active cases of people diagnosed with the AIDS virus, up from 50 last year. Three-quarters of the victims are men, one-quarter are women.

Several factors influence the statistics for the area: They do not include people who live in North County but within the San Diego city limits, or those who have moved to be closer to services in San Diego or elsewhere.

New services becoming available in North County are due in great measure to the efforts of a Solana Beach couple, Mary Jane and Roger Boyd.

They are working to serve as advocates for those with AIDS under the name North County Community AIDS Partnership. Among the goals of the nonprofit partnership is raising funds in North County to help those who live in North County better deal with their illness, Roger Boyd said.

The Boyds formed the partnership after the San Diego AIDS Foundation, citing a shortage of money, closed its one-person office in Vista.

Roger Boyd is a retired electronics company engineer. He resigned his position on the AIDS Foundation board to start the partnership. His wife, whose nephew died of AIDS last year, is a nurse at a hospice. She also was on the board of directors of Fraternity House.

“We saw need for more services,” Roger Boyd said. “People living in suburban and rural areas should not be forced to move downtown.”

One of the couple’s first moves was to improve coordination among the members of the North County AIDS Coalition, a networking organization of agencies providing services for those with AIDS. The revived group now meets once a month at Palomar Medical Center in Escondido, Tri-City Medical Center in Oceanside or Scripps Memorial Hospital in Encinitas.

At a recent meeting, members of the coalition heard stories of frustration from individuals with AIDS.

Roy Darington and his lover moved to Oceanside from San Francisco in April. They located an apartment without difficulty but soon found themselves without the AIDS support services they thought would be within reach.

Darington told of making 250 phone calls to locate agencies that could help him and his partner find AIDS services. What Darington got in his calls was a lot of bad information and disconnected numbers.

A woman told the coalition she had the same trouble trying to find a support group, people who would understand the problems of a heterosexual woman with AIDS.

“In order for me to find a support group in North County, I ended up calling over 30 numbers,” the woman, who asked that her name not be used, said in a recent interview. “A lot were disconnected or answering machines. And, when you are calling around with AIDS, you don’t want to leave your name.

“It seems like none of the agencies have anybody on the phone just to take calls. And it doesn’t seem like anybody in San Diego knows what’s going on in North County.”

Roger Boyd said the experiences of Darington and the woman point out what has been one of North County’s greatest needs--an AIDS hot line. None exists.

Boyd said the San Diego AIDS Foundation has since agreed to provide better information on North County services to people working the hot line in San Diego.

Other improvements have become or are about to become available.

Being Alive, a nonprofit AIDS organization, recently began sponsoring four weekly support groups.

One, which meets in Encinitas, is limited to people who are HIV positive or have AIDS. Two other groups, in Encinitas and Vista, are set up for the family, friends and lovers of those with the disease. And another, for women who are HIV positive or have AIDS, meets in Vista. The original North County support group--sponsored by the AIDS Foundation and open to those infected and affected by the virus--still meets in Vista.

In September, the AIDS Foundation plans once again to have a case manager assigned solely to North County. The office will be at the Vista Community Clinic.

In mid-September, Mama’s Kitchen, a San Diego program that delivers hot food to AIDS sufferers unable to prepare their own meals, will be starting a route to north coastal communities. So far, the service has arranged for deliveries to six clients and is looking for more along the coast, said Gene Kilanowski, a volunteer coordinator for the program. The kitchen is considering whether a demand exists in inland North County, he said.

Catholic Charities is expected to use existing facilities in Carlsbad and Oceanside next month to open food banks to serve people with AIDS.

“For people who are sick and whose energy level is greatly diminished by their condition, they can not be expected to get down to San Diego to get food,” said Mary Jane Boyd.

But many more services are needed. And the Boyds say they expect to continue working with individuals and agencies to encourage greater support for those dealing with the disease.

The Boyds are currently working on plans for the first AIDS Walk in North County. The event to raise money and increase public awareness of AIDS issues is scheduled for Oct. 24 in Oceanside.

“More and more residents of North County want money raised in North County to stay in North County, and not be funneled through San Diego,” Roger Boyd said.

Meanwhile, things are improving for Roy Darington. Since he spoke to the North County AIDS Coalition, he has received several offers for help. He is now hopeful that he and his lover can live a quality life in their remaining days.

“People have really rallied recently,” he said, “but I had to stomp and shout.”

WHERE TO VOLUNTEER

North County Community

AIDS Partnership, 945-2945

Fraternity House, 724-2784

Being Alive, 291-1400

SUPPORT GROUPS

HIV-Positive and Significant Others, All Saints Episcopal Church, 601 Eucalyptus Ave., Vista. Meets 7 p.m. Mondays. Sponsored by AIDS Foundation, 686-5050.

People with HIV/AIDS, Scripps Hospital, Encinitas. Meets 7 p.m. Tuesdays. Mary Jane Boyd, facilitator, 481-7547. Sponsored by Being Alive.

Family, Friends and Lovers, Scripps Hospital, Encinitas, Meets 7 p.m. Tuesdays. Roger Boyd, facilitator, 481-7547. Sponsored by Being Alive.

Family, Friends and Significant Others, North County Health Services, 348 Rancheros Drive, San Marcos. Meets 7:30 p.m. Tuesdays. Facilitators Ruth Kornhaush, 598-9243, or Ernie Castro, 538-6197. Sponsored by Being Alive.

HIV-positive Women’s Support Group, Vista (call for address). Meets 7 p.m. Mondays. Facilitators Judy Schnack, 552-8585, ext. 3180, and Lee Berchak, 471-2100.