Having AIDS -- and a Future

Joe Filia learned he was HIV-positive in 1985, not long after the first tests for the virus that causes AIDS were made available to the public.

For the next six years he lived secretly with the knowledge that his life could soon be over, while the world debated the moral and medical implications of the disease.

“I didn’t tell anybody. I thought I was dead. I lived in fear every single day that I would become sick and somebody would find out. I did not take any drugs or go to a doctor until six years later, when I became extremely ill,” said Filia, a 36-year-old Anaheim resident who lost a successful pet store in 1992 after the disease took hold. “I felt like the situation was out of my control.”

But new combination drug treatments have allowed Filia to make the journey from outcast to activist. As a volunteer with AIDS Services Foundation Orange County, Filia meets with county political leaders to encourage their support for prospective legislation that would help those with AIDS return to work.

Now he is fighting for more than survival. He wants his life back.

“I had sold everything I owned, step by step, to survive. I went to a free clinic, I signed up for SSI [federal Supplemental Security Income], and that’s when Medicaid kicked in. It was hard to go from owning my own business to living on $429 a month. But I’m lucky. I have friends who help me.”

In January, Filia was appointed to a two-year term on the county’s HIV Planning Council by the Board of Supervisors.

“It’s been a big step for me, going from a person who was afraid to tell anybody about what was happening to me, to doing this. It helps that I really believe in what I’m doing, that there’s a real need for people like myself who have actually received the benefits of the medical breakthroughs and the programs like ASF, to speak out,” said Filia, one of several volunteers who work under the direction of Tom Peterson, the foundation’s public policy coordinator.

After 14 years as an animal health care technician for veterinarians and pet shops, Filia and a partner opened a pet store called Pets West in Tustin in 1989. The store did well, but two years later the disease that had stayed dormant for so long sent him to the hospital. His doctor told him he could not work around animals any longer. The danger to his weakened immune system from bacteria carried by the variety of pets in his store was too great.

“I’d been sick constantly,” he said. “It started out with pneumonia and moved to some of those ‘mystery’ diseases that they were never able to quite come up with a diagnosis on. They never really came up with a solution, and I was told several times that I wasn’t going to make it. But my body was somehow able to fight whatever was going on.”

*

In 1995, Filia began taking a combination of newly emerging AIDS drugs. It took almost a year for him to feel positive effects from the medications. A year later, he added on new drugs called protease inhibitors.

“I am one of the lucky ones that this has worked for,” he said. “They do not work for everybody. I take about 21 pills a day. Within a couple months I actually began to feel better, which is unusual. I had been completely bedridden, and I got a second chance. But I realize that at any point, this could all change. We don’t know exactly how long these drugs will work. It depends on the individual.

“I’m hoping they continue to make medical advances that will give people a little bit more encouragement to continue to take the drugs, to give them hope for a better future,” Filia continued. “You can get really tired of having to take so many pills each day, having everything in your life so timed out. And they make you feel like you have a touch of the flu, every hour of every day of your life.”

The federal Centers for Disease Control and Prevention reported in February that deaths from AIDS-related symptoms fell 44% during the first half of 1997, compared to the year before. In Orange County there were 36.9% fewer AIDS deaths for the same period, according to the Orange County Health Care Agency. Like so many others with AIDS who were not expected to survive, Filia said his life is still in limbo.

He is well enough to work part time, but he can’t risk losing SSI or Medicaid by earning a part-time salary. He takes $15,000 worth of pills a year to fight the virus, and that does not include other medical costs. Finding an employer willing to hire someone like himself with AIDS, offer adequate health insurance and allow the flexibility to work the hours his illness requires has proved impossible so far, he said.

“Society has made some advances, but not nearly enough,” he said. “I’d love to go to work and get a job and go back to being just an everyday, average Joe. But there’s so many roadblocks ahead of me. It’s still very hard to think about the future.”

(BEGIN TEXT OF INFOBOX / INFOGRAPHIC)

Profile: Joe Filia

Age: 36

Hometown: Anaheim

Residence: Anaheim

Education: Studies at Cal Poly Pomona; training in animal health care

Background: Began working at animal hospitals at age 16; animal health technician at Del Rio Animal Hospital, Fullerton, 1977-79; worked for numerous veterinarians and pet stores in Southern and Northern California, 1979-1989; opened Tustin pet store called Pets West, 1989; closed business in 1992 because of illness

AIDS Activism: Client volunteer at AIDS Services Foundation Orange County (ASF); ASF public policy committee member, involved in lobbying efforts and letter-writing campaigns through 11-year-old organization’s Speak Up! program to encourage legislation regarding workplace rights and other issues; helped create World AIDS Day resolution calling for end to AIDS discrimination, adopted by county Board of Supervisors in December 1997; member, HIV Planning Council of Orange County, appointed by Board of Supervisors in January to a two-year term

On AIDS and employment: “I want to be a productive member of society. The government has paid all this money to help me get better, yet there are no real back-to-work programs out there for people like me. It’s hard to find an understanding employer.”

Source: Joe Filia; Researched by

RUSS LOAR / For The Times