Local Latinos Respond to HIV in Their Communities

The Needs

Nationwide, the Latino community bears an increasing burden of HIV disease. Hispanics made up 18 percent of AIDS cases in 1999, even though they made up only 13 percent of the overall population. The June 2001 issue of the Journal of the International AIDS Society -- USA notes that the rate of AIDS among Latino men in 1999 was 3.27 times that of white men, and the rate of AIDS among Latina women was 6.9 times that of white women.

Locally, the statistics are less disproportionate: 7 percent of Washington state's population is of Hispanic or Latino origin, according to 2000 census data, and 7 percent of Washington state's AIDS cases are in Hispanics. Javier Amaya, HIV/STD Education Program Coordinator for Public Health Seattle and King County, agrees that in King County, "Based on statistics and case reporting, we don't have the same tragic situation that is present in other parts of the country." These statistics are "based on the numbers reported," Amaya stresses, "so accurate case reporting becomes critical to reflect the real needs." The rate of HIV among Latinos in Washington state is increasing, however, and varies widely by region. In Central Washington, for instance, nearly 40% of people living with AIDS are of Hispanic origin.

In 1999, a coalition of King County Latino clients and service providers, called "Latinos en Marcha" convened a forum to assess the needs of the community. About 70 people participated. The lack of services available in Spanish was identified as one of the biggest barriers facing Latinos with HIV when they attempt to access medical and social services. "We even heard complaints from some clients that they would have to wait for a translator," reports Amaya, "or be asked to come back with a family member or a friend to discuss [and translate] sensitive information. Clearly this is unacceptable."

The Programs

Since Amaya began working with HIV/AIDS 13 years ago, he has seen a lot of progress in reaching the Latino community. "There's a lot of HIV educational material in Spanish available, monies are allocated for community-based programs, and more Latinos than ever are working in prevention, case management, and different HIV/AIDS educational agencies."

Amaya frequently uses the "pink pages," the Seattle Area HIV/AIDS Resource Pages, to refer Latinos to HIV/AIDS services. (To obtain a copy call 206-205-STDS.) The AIDS Care Access Project is also "a great place to start," offering bilingual help locating healthcare providers, case managers and other services. He pointed out that the Washington State Early Intervention Program also plays an important part in providing access to treatment for many Latinos. Additionally, Amaya refers people living with HIV to the LifeLong AIDS Alliance, "They have case managers who speak Spanish, and that is a good way for people to access housing and other services."

One of the largest Latino-specific service agencies is Consejo, a referral service and counseling agency with locations in Seattle, Tacoma, and Yakima. Consejo was founded over 20 years ago as a mental health agency. Consejo is a bicultural and bilingual agency, with a staff that includes counselors, case managers, and psychiatrists. Ninety percent of Consejo's clients are Spanish-speaking. In addition to the HIV/AIDS program, which began in May 2000, Consejo also offers support groups for substance abuse and alcoholism, as well as a domestic violence program.

The Barriers: Being Bilingual is Not Enough

Angelina Ramos is an HIV/AIDS case manager at Consejo. "The needs within the Hispanic/Latino community for this program," says Ramos, speaking about the case management available at Consejo, "are overwhelming. We are not only a referral agency, but we help the client with housing, utility bills, etcetera. Some clients require 100 percent care. What I mean is, reading and translating all paperwork, transportation, being present during doctor's appointments, etcetera."

Ramos notes "I don't think there is another agency in our community that can serve our clients in a culturally appropriate way. Just because a provider speaks Spanish, doesn't mean that they are going to understand our fears and our doubts." In prevention, simply providing condoms isn't enough. "There is a huge stigma around using condoms," Ramos states. "For example, [women think] 'If I ask him to put on a condom, he's going to think I'm infected.' That is the kind of mentality that we, as Latinos, have to break away from. I also think that religion has made us a bunch of cowards. We can't even talk about sex in an open way. Religion has silenced a lot of voices, just when we should be screaming."

Amaya also recognizes the influence of Latino culture on the HIV/AIDS epidemic. "There was a lot of resistance back in the '80s among some of the Latino community leaders. They didn't want to talk about prevention and the use of condoms." They had a hard time accepting that there were gay Latinos. They had problems even printing the word 'sexuality' or 'homosexuality' in their publications. The International AIDS Society reports that there is a considerable amount of homophobia among Latino men and that fewer Latino men identify themselves as homosexual or bisexual compared to men of other racial or ethnic groups. "In recent years, with all the information in the media," Amaya adds, "I think they [community leaders] have come to realize that HIV, condoms, and homosexuals are something that their community has to deal with and that help is needed."

Another barrier to care, according to Ramos, is "the lack of knowledge within the Latino community, not knowing how the system works. Clients usually don't know which insurance card they need to use when meeting with providers or going to hospitals."

The International AIDS Society notes that the hurried pace in many clinical settings may feel like rudeness to Latinos, whose cultural values give priority to attending to personal relationships.

And these barriers can add up to a crisis. By the time a Latino patient is identified as HIV-positive, the disease has already progressed. The International AIDS Society reports that in Los Angeles County for the period 1997 through 1999, 36 percent of Latinos were diagnosed with AIDS within 1 month of learning they were HIV-positive; 65 percent of Latinos were diagnosed with AIDS within 12 months of learning they were HIV-positive, and only 16 percent had as long as 60 months before progressing to AIDS.

A Personal Story

Late diagnosis was certainly one of the barriers faced by Luis Ramirez, who has also experienced homophobia and cultural insensitivity as a Latino living with AIDS. Luis was born in Mexico City and was visiting Seattle in June 1998 as a tourist, when he began to experience gastrointestinal problems, which he thought was probably food poisoning. On his birthday, he finally sought medical attention from the Department of Health, and it was then that he found out he was HIV-positive.

"One day I lost control of my life; I was diagnosed HIV-positive. Everything changed after that, even after my return to Mexico. After a while, I decided to come back, remembering that someone told me about the amount of resources [for HIV] in the U.S. I went to Harborview [Medical Center] after my arrival and they checked me in for 15 days right away, IVs day and night. Then I spent 30 days in Bailey-Boushay house. I almost lost my sight. I had to have people helping me take showers, even feed myself."

Ramirez also believes that in many cases Latinos don't have access to treatment in the early stages of the disease because of cultural and social barriers. He emphasizes, "Definitely, we not only need bilingual, but also bicultural help. I've witnessed for example, where a Latino client is expressing his or her need to a case manager that only speaks English and the person translating changes one word and the whole concept or need is changed. Translations tend to omit key words that mean so much to an idea, therefore destroying what was meant to be said."

Ramirez was quick to point out that things are getting better, "I have seen a lot of progress in the past two years. I would like to mention as well, the amount of Spanish information [available at the] Madison clinic. POCAAN [People of Color Against AIDS Network] is another agency that's making strides in inclusion."

Ramirez says, "Western medicine gave me the opportunity to have time, but I am learning to have a better quality in my life while living with this virus. In the meantime, I try to find a new place in life." That new place has included participating in research at the University of Washington's AIDS Clinical Trials Unit and volunteering with a number of organizations that seek to address the problems of HIV in the Latino community. "We live in very hard times. Jet lag, wear, and frustration, take advantage of persons that before were outstanding in this struggle. I hope that it is not necessary to wait too long for a new generation of leaders and activists to continue this work."