Got a job? Then you might get treatment. But most PWAs are on their own
The lives of David Urbina and Magda Suarez intersect rarely, although as two Mexicans with HIV, they have much in common. In 1996, both joined treatment protocols run by the National Council for the Control and Prevention of AIDS (CONASIDA), the government’s AIDS bureaucracy, but only Urbina got into the study testing the then-new protease inhibitors.
Suarez (who asked that her real name not be used) was enrolled in the “compassionate protocol,” receiving only AZT and other already-available nukes. Call it luck, for lack of a better word, that marks the difference in their fate—a difference emblematic of the disparities of living with HIV in Mexico today.
Urbina and Suarez are two of the almost 40,000 AIDS cases recorded in Mexico since the epidemic hit in 1983, according to CONASIDA. Of that number, slightly more than half have died. Currently, the World Health Organization estimates that about 180,000 Mexicans are living with HIV. Thanks to Urbina’s job—he is a health instructor for hospital patients with HIV—he has not only Social Security health insurance but a three-drug protease cocktail, an undetectable viral load and more than 500 CD4 cells. Suarez has no health insurance—in fact, she and 12 others had to sue the federal authorities in 1997, when the drug trial that supplied their antiretrovirals was suspended. And now, although the plaintiffs in the case have all had their meds temporarily restored, she can’t afford the tests that would let her better monitor her immune system and determine if the drugs are working.
In Mexico, as in its northern neighbor, people with HIV are essentially divided into two groups: those with health insurance who can access care and treatment, and those without. Most HIV positive Mexicans fall in the latter group. Their survival strategies vary: Some look—often in vain—for jobs so they can get Social Security health insurance; others travel to the United States for treatment, try alternative medicine or visit medicine banks operated by nongovernment organizations. But those without money or connections—the majority—have little hope.
Urbina, who lives in a quiet, middle-class neighborhood in Mexico City, is one of the privileged few, and he is now secure enough to be one of few openly HIV positive Mexicans. This is a recent development: For nine years he kept his status a secret for fear of being fired from his job as a sales rep seeing up to eight clients daily. His health had deteriorated by the time he confided in a doctor in the mid-’90s. “When I came out, it was because I was in the process of applying for my pension,” he says. “The doctor told me that my illness was very advanced, that I should finish up anything I needed to do and make out a will. At that point, I couldn’t hide anymore.”
But Urbina has few regrets about having stayed in the HIV closet for several years. “Imagine what would have happened if I had made my HIV status known earlier,” he says, noting that in Mexico, ignorance regarding AIDS is as widespread as ever. Suarez has come to know well the stigma that is the direct result of this ignorance. But she says that belonging to a support group of people with HIV has helped her: “Before, when I went into the street, I felt as though I had a sign hanging around my neck.” Suarez and her three children share a small piece of land with her three brothers and their families in the southern part of Mexico City. Not all of the 16 relatives living in her cramped house are aware that she has HIV.
Suarez learned that she had the virus by accident only two years ago. Hers is a common story: Hundreds of Mexican women, mostly housewives, have been infected by their husbands. Suarez learned what illness it was that killed her truck-driver husband only a year after his death, from the family doctor. (When he got sick, she left her job as a seamstress to sell candy and handmade doilies out of her house. “I had heard people talking about AIDS, but I never imagined it could happen to me,” she recalls.
Infections among Mexican homemakers are hard to count, let alone control, and rates are rising quickly. Many of the women believe themselves to be out of harm’s way. When they finally realize they’re at risk, they’re often unable or unwilling—being economically dependent—to confront their husbands, who may refuse to use condoms but have other sex partners.
In Mexico as elsewhere in the developing world, the introduction of protease inhibitors gave hope and galvanized the fight for access to the treatment revolution. In 1996, after three months of combination therapy via a Crixivan trial, Urbina saw his health improve. This inspired him to work with others to organize the National Front of People Affected by HIV (FRENPAVIH), an advocacy group that pressures health officials to make the drugs more widely available. Taking a cue from the rebels of the National Zapatista Liberation Army, which has seized control of land in the southern state of Chiapas to dramatize the marginalization of Mexico’s indigenous people, FRENPAVIH members wear white ski masks to protect their anonymity while demanding greater visibility for Mexicans with HIV. They are seeking to end widespread disparities: While Social Security authorities buy the protease drugs quickly for enrolled workers and their families, the Ministry of Health, which provides basic health care to the unemployed, claims there is insufficient money in its budget to purchase the treatments.
The government responded to the activists’ demands by establishing a fund with donations from the private sector for the purchase of antiretrovirals. But access to this fund, dubbed FONSIDA, is limited to pregnant women and children (fewer than 3 percent of AIDS cases). This condition causes Suarez to quip, “So you mean I have to get pregnant again to get treatment?”
The federal government has difficulty providing even these paltry measures. Under a strict fiscal plan implemented in the wake of the currency’s collapse in December 1994, budget cuts have hit social-service expenditures particularly hard. This has left Suarez out of luck: Her 400 peso ($40) monthly public assistance was terminated last year, her continued antiretroviral access depends on an upcoming decision in her lawsuit,, and her health may be in jeopardy.
No specific antidiscrimination law, such as the American for Disabilities Act, protects Mexicans with HIV. Instead, there’s a 1995 statute stipulating that all public and private health care organizations administer HIV tests on a voluntary-only basis and ensure the confidentiality of the results. But under a separate law, private companies can force their employees to undergo medical exams, including HIV tests. Therefore, such firms can identify which employees are HIV positive—and fire them. This draconian legislation could cause a new generation of Urbinas and Suarezes to hide their status—and therefore shun quality care. New groups such as FRENPAVIH have vowed to overturn this law and others that keep Mexicans with HIV from realizing their dream of health, hope and a future.