San Francisco Chronicle - Friday, January 15, 1999
Kimberly Chun, Chronicle Staff Writer

But although he is bilingual and was raised in South San Francisco, Sotelo soon realized that getting people to talk freely about the disease was a complicated task that went beyond language.

"Latin people have a lot of pride. And then some people just don't want to be helped," Sotelo says, brushing his short black hair back and cradling the back of his head in his hands. "That's stressful in itself, knowing someone is sick and maybe he's in some trouble."

But Sotelo, hired in July, hopes to be a quick study working at the AIDS Community Research Consortium. Latinos, along with African Americans and women, are among the fastest-growing segments in San Mateo County contracting the disease.

ACRC is one of the organizations in the county attempting to get the newest treatments to people who otherwise might not have access to information and medication. The nonprofit community-based group was designed to test cutting-edge treatments and make them available to people with AIDS and HIV in local clinics or private physicians' offices in San Mateo, Santa Clara and Santa Cruz counties or at the organization's facility on El Camino Real, across from Sequoia Station, in Redwood City.

The 10-year-old organization has done research on most of the current advances in AIDS treatments. But it does much more than dispense medicine: It reaches out to the community whenever and however it can.

On any day of the week, Sotelo can be found scrounging up a refrigerator for one client or getting food for another at Ellipse Peninsula AIDS Services, a San Mateo support group for AIDS patients. ACRC's African American community outreach coordinator Luther Brock, an East Palo Alto activist and co-founder of the East Palo Alto drug treatment and recovery program Free at Last, might be seen driving HIV-positive patients to their doctor's appointments or getting them legal aid or substance abuse treatment.

"We find that each of the different cultures require a touchstone, a person from that community to sit and explain to them what's going on, without someone watching over their shoulder -- someone who's knowledgeable that they can trust," says Michael Edell, ACRC's executive director.

In October, ACRC started a 16-week course, "Living Now," to serve as an "HIV university" or peer-education program for people who are living with the virus.

At a recent class, Mike Domelly from ACT UP Golden Gate talked to the lively circle of 13 participants who are HIV-positive about ways to get out the word and print flyers.

But posters are only a start, says Ricky Ward, 49, a former longtime East Palo Alto resident, a study of contrasts in a camel sweater and denim overalls, scholarly spectacles perched on his fine-boned face.

"Parents are in denial. They don't want to talk to kids about sex education. Somehow you have to break that barrier," he says. "We have to tell them, `We can't stop you from doing it, but you need to learn about safe sex.' They have to learn about accountability."

Accountability goes two ways at ACRC. Edell says the organization was one of the first to solicit advice from volunteers, consultants and an advisory board of people living with HIV.

"Research has had for such a long time such an Anglo face," he says. "We felt that as the face of AIDS has changed, so too the face of AIDS research."

The 200 to 600 clients a year are served by 12 to 17 researchers, including research nurse Brian Camp, who is HIV-positive.

"Patients have said to me, `You don't understand what I'm going through,' " says Camp. "And I say, `I know what you're going through. I'm going through the same drug regime and I know what the side effects are like.' I know what going through all the visits means when you're not feeling well, because I was a study patient before I became a study nurse."

Yvonne Reel, 42, of Redwood City, who describes herself as a former "career drug addict," participates in ACRC's studies on HIV. In the "Living Now" class, she also studies the disease, ways to monitor her treatment, patient rights and nutrition as well as patient activism and advocacy.

"I believe being an activist is a way of being stress-free because I don't have to hide," says Reel, a dreadlock dangling over her brow and a gold ring in her nose. "Hiding is a problem because you always have to push down what you feel like, not wanting anybody to know about you."

It took her about four years and an eight-month stint in jail to accept her addiction and HIV-positive status. Today, medication-free, she maintains a Web site on AIDS information at Plugged In, a nonprofit community computer center in East Palo Alto. She says she will use the information from the classes at ACRC, the College of San Mateo and Canada College in her next career as a drug and alcohol counselor.

"My tears of sadness, shame or guilt are now tears of joy," she says tenderly.

THE EPIDEMIC IN THE COUNTY

The African American majority in Reel and Ward's class reflects the increasing numbers of people of color with HIV and AIDS in the county. Out of the 1,704 AIDS cases reported in San Mateo County between 1981 and 1998, 35 percent are people of color. That breaks down to 17 percent African American, 13 percent Latino and 5 percent Asian and Pacific Islander. Eleven percent are women.

The numbers and the ethnic breakdown contrasts with the 25,000 cases in San Francisco, says John Conley, deputy director of public health for San Mateo County Health Services.

"San Francisco may be unique in that there's still overwhelming numbers of whites infected," he says. "Statistics in San Mateo are closer to statistics you might get in East Coast."

The rate of infection has been steady, but the number of deaths has decreased because of protease inhibitors and antiviral drug combinations, says Conley. But the treatment has also become more complicated as more people coping with substance abuse and mental health problems are infected. "Once they are infected, they are very likely to transfer disease to others," he says. "Mental health and addiction need to be dealt with as part of the process. We can't just address their HIV."

One thread unites many of those living with HIV and AIDS.

"What all of these groups might have in common is that by and large, they are people who have been disenfranchised or cut off from the health care system," Conley says.

IN THE LATINO COMMUNITY

Each ethnic community, however, has specific cultural and historical barriers to getting treatment and learning about the disease. In the Latino community, a taboo against homosexuality prevents some with HIV from coming forward, says Marise Rodriguez, director of education and outreach at El Concilio of San Mateo County, a health clinic in Burlingame.

"Then there are men having sex with men who don't identify as gay. They come home to their wives and children to also infect their wives," Rodriguez says. "There's denial on the women's part that it's happening, and it's very hush-hush on the male partner's part."

Women also encounter gender stereotypes when it comes to safe sex, Rodriguez says.

"There's also a tendency of not wanting to use protection in intercourse. It goes along with machismo behavior in the community," she says. "There's still a segment of the Latino population that has very strong role definitions: A woman's place is in the house, and the man is in charge of everything, and if he says, `No, we're not going to use it,' that's the way it goes.' "

Illiteracy adds to the problem of educating at-risk people about HIV and AIDS as well as the issue of being a legal or illegal immigrant, she adds. Immigration status and deep- seated distrust of government or public health authorities -- shared by some African Americans still shaken by the infamous Tuskegee syphilis study -- probably affects the numbers of reported cases, Conley says.

Sotelo faces a daunting challenge in gaining the trust of at-risk Latino clients. Sitting at his desk at ACRC, beneath Spanish-language AIDS prevention posters, Sotelo talks of one incident in which he approached a Latino man who was holding one of his flyers. Sotelo ended up getting an angry, defensive response.

Today, Sotelo is feeling stressed because he hasn't heard from a client with AIDS who has been sick. Sotelo left messages and dropped by his client's house, and now he just has to wait because he doesn't want to seem like he's harassing him.

"It's really hard with the Latin community because it's, you know, closed, and they don't want you to know that they're sick, especially their families," Sotelo says. "A lot of people that I see now are kind of closed off, or they've been living at home with their families and nobody in their family knows that they're HIV-positive. They haven't told their families because they're scared that they're going to be kicked out."

REACHING OUT ON ALL LEVELS

Sotelo graduated from San Jose State with a bachelor's degree in health sciences and is working on his master's degree in business at San Francisco State. He is glad he took this particular job out of the three offers he had after the funding was cut for his laboratory assistant position at Stanford.

"The main reason I chose this place is that I wanted to really help out my community," Sotelo says. "There's no other person out there that is bilingual, trying to get people to go into clinical trials, and I'm not just trying to do that -- I'm trying to just provide them with services."

Brock is teaching him the ropes. After three years as ACRC's sole community education and outreach coordinator working with about 100 people a week, Brock knows just what to do if, for instance, a person with HIV has just gotten out of prison and hasn't seen a parole officer in a week.

"He's mad, loaded, got HIV, hooked," Brock says. "I would say, `I'll put you on methadone today, call your parole officer, then when you're off methadone, I'll put you in a detox center, and if you finish it I will get you first and last month's rent paid, get you a job.' I just help people do the things they want to do in life."

Although Brock is HIV-negative, as a former drug addict and amphetamine dealer, he says many of his friends and family are HIV-positive. Two of his girlfriends died of AIDS.

"I'm like a scout that's got a butt shot full of arrows, helping you," he quips.

Sotelo hasn't had the same history, but he's an attentive student. He hangs out at clinics and mobile health vans in East Palo Alto that provide screenings and examinations for HIV and other sexually transmitted diseases. He also visits other organizations, such as the South San Francisco gang prevention group Barrios Unidos, that cater to at-risk populations.

"I'm still kind of learning the system," he says. "I hang out at the vans just to get known by people out in the street so that someone would say, `Oh yeah, I know this person you can talk to.' "

HIV, AIDS RESOURCES

-- AIDS Community Research Consortium is accepting participants for its "Living Now" program for 1999. Information is also available on other programs, studies and trials. Volunteer help and monetary and office equipment donations are welcome. Call (650) 364-6563 or visit www.acrc.org.

-- Catholic Charities' HIV Food Services serves low-income San Mateo County residents who are HIV-positive. Call (650) 579-7490.

-- Ellipse-Peninsula AIDS Services provides support groups, a food program and peer counseling. Call (650) 572-9702.

-- San Mateo County Public Health Department's AIDS clinic provides clinical services and counseling. Call (650) 573-2385 or (650) 573-2757.
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