When John speaks in public about living with AIDS, he introduces himself as “John from Pismo Beach.” In fact, he didn’t want his last name printed for this story because of the risk of discrimination.

John tells his story to schools, service groups, churches and organizations as part of the “My Face, My Voice” program through the AIDS Support Network of San Luis Obispo County. The program trains speakers to educate the public and give a face and a voice to people with HIV and AIDS.

John was infected sometime around 1982. At the time, he didn’t know about HIV, and he wasn’t told condoms could have protected him.

“We were told to use condoms to protect women from getting pregnant, and to protect from STDs,” John said. “We were also told that STDs were treatable.”

When he was growing up in the 1960s, safe sex wasn’t necessarily something one could talk about. Since his parents were devout Catholics, and he was gay, sex was even less approachable as a topic.

John was diagnosed with AIDS in 1985. (See sidebar for diagnosis criteria.) Because of the stigma, he kept quiet about his diagnosis at his new job in Los Angeles for about a year.

“People really thought that you can get HIV and AIDS from doorknobs,” John said. “It was a horrible period of time.”

Advertisement

He came out about his diagnosis because he wanted to take charge of his life and his health, and the stress of hiding his condition was taking its toll on him. He is now retired and on disability, but said maintaining his health is “a full-time job.”

AIDS complacency

Edie Kahn, executive director of AIDS Support Network of San Luis Obispo County, said many people don’t think they’re at risk for contracting HIV if they’re not part of certain populations.

“Unfortunately, the disease doesn’t care who you are,” Kahn said. “If you’re practicing some risky behaviors, then you’re just as likely to get the disease as any other person.”

She noted that “there are a lot of growing populations of HIV,” including ethnic minorities in the Southern region of the United States, women, IV drug users and younger gay men, who she thinks may be jaded to prevention messages, and engage in risky behavior because they think infection is inevitable.

“The other thing is, people think the medications are a cure,” Kahn said. “There is no cure.”

AIDS Support Network

The ASN started 24 years ago after a man with AIDS showed up at the San Luis Obispo General Hospital, and workers “had no idea what to do with him,” said Kahn.

“They sent him up to San Francisco in an ambulance, and he died about four days later,” Kahn said. “There was a group of people who got together and said, ‘This is not going to happen again in this county.’”

Meetings started in people’s homes and in churches. Volunteers took people they knew with HIV or AIDS to doctor’s appointments and helped them with basic household needs.

The grassroots effort expanded with federal funding from the Ryan White Act, enacted in 1990, which allowed for hired staff. But to this day, a huge portion of the essential services are provided by volunteers.

Volunteers conduct food drives and organize the group’s food pantry; answer the phone at the front desk; provide transportation to doctors’ appointments or grocery stores, and help clients with housekeeping, landscaping and home repairs. They write thank-you letters, bake cookies for clients, and maintain the ASN’s AIDS memorial grove.

The agency also provides mental health counseling, financial assistance for housing costs and utilities, and a benefits counselor to explain healthcare options to clients.

Kahn said many of the clients are on disability and get $900 a month, if they’re lucky. Some work full-time and have other resources available, but many can’t work because of their health, and they tend to be low-income.

The volunteers provide services the agency couldn’t provide if they had to paid them, said Kahn.

“Being able to go to the grocery store … having an evening meal because a volunteer came over and made one for you ... Really all of those things are quite vital,” Kahn said.

AIDS and HIV today

According to John, people today who benefit from cutting-edge medications, fundraising efforts and public awareness for diseases such as breast cancer owe a lot to the AIDS activists in the 1980s.

Disability benefits used to take eight to 12 months to come; by the time they arrived, many clients with AIDS had already died.

He’s thankful that younger generations seem to be better educated about the disease, but said more work needs to be done.

“I think because people think that it is a gay (disease), that if they’re heterosexual and having heterosexual sex, it’s not a problem,” John said. “And that’s a problem, because anyone ... can get infected.”

Understanding the disease is key to decreasing the fear of it, and increases the likelihood of getting tested for HIV, seeking treatment, or preventing infection in the first place.

“HIV is not scary,” John said. “First of all, you don’t want to get infected, so take every measure you can. (But) I would say, even if you do get infected for some stupid reason or some reason beyond your control … don’t freak out. You’ll be OK. But don’t get infected. Because there are so many things ... It’s not easy to be where I am.”

Bettina Adragna can be reached at 739-2220 or at badragna@santa mariatimes.com.

BY THE NUMBERS:

In Santa Barbara County, as of Dec. 31, 2007:

412 people were living with HIV and/or AIDS.

498 people died of AIDS in 2007.

In the past decade or so, there has been an average of 20 new AIDS cases a year.

Heterosexual transmission has decreased from 14 percent to 11 percent during the past five years.

Funding for HIV/AIDS in Santa Barbara County has decreased by three to five percent per year since 2003, while the number of people being treated has grown by about five percent each year.

There was a much higher incidence of AIDS cases in the mid-1990s. The advent of the anti-retroviral combination therapy (cocktail) “significantly improved patient health, extended the time frame from HIV to AIDS and improved patient long-term survivability.”

— Source: Dan Reid, program administrator for the HIV/AIDS Services Program in Santa Barbara.

In San Luis Obispo County:

As of June 2007, there were five reported cases of AIDS and no reported deaths.

From 1983 to 1989, there were 63 reported cases of AIDS and 58 reported deaths, making the case fatality rate 92.1 percent.

AIDS deaths decreased from 11 in 1996 to three in 1997.

— Source: County of San Luis Obispo Public Health Department.

WHAT ARE HIV AND AIDS?

HIV, the viruses that causes AIDS, stands for “human immunodeficiency virus.”

HIV attacks the immune system, which fights off infections. It does this by finding and destroying a type of white blood cell, “T cells” or “CD4 cells,” which the immune system needs to fight off disease.

AIDS, which stands for “acquired immunodeficiency virus,” is the final stage of HIV infection.

When someone has HIV and either a T cell count of less than 200 per cubic millimeter of blood, or one of the common problems in people with AIDS (called opportunistic infections), they are diagnosed with AIDS.

HIV TRANSMISSION

HIV is transmitted from one person to another when infected blood, semen, or vaginal secretions come in contact with an uninfected person’s broken skin or mucous membranes. (Mucous membranes can include the mouth, eyes, nose, vagina, rectum, and the opening of the penis.)

Infected pregnant women can pass HIV to their baby during pregnancy, delivery, or breast-feeding.

HIV is spread by having vaginal, anal or oral sex with someone who has HIV; sharing needles with someone who has HIV, such as during injection drug use; pregnancy, birth or breastfeeding if a mother has HIV, or by getting transfusions of blood that has HIV, which is rare in the United States.

HIV is not spread by sitting on toilet seats; hugging, shaking hands with, or closed-mouth kissing with an HIV-infected person; sharing food or drinks, donating blood, working with or being around someone with HIV, using phones, getting bug bites, tears, or swimming in pools.

— Source: The Centers for Disease Control and Prevention, www.cdc.gov, and the National Women’s Health Information Center, www.womenshealth.gov