Important note: Information in this article was accurate in October 2002. The state of the art may have changed since the publication date.
American Foundation for AIDS Research, October 2002
Anne-christine d’Adesky
It is the middle of June, and the rainy season has settled upon southern Mexico’s Oaxaca state. In the Sierra Madre mountain range, dark storm clouds begin gathering at midday, blending into the dense fog that wraps itself around tall pines covering the volcanic peaks. Visibility is near zero. Small earthquakes are common. By nightfall, heavy torrents have caused landslides and washouts of the two worn, curving highways that lead inland from the Pacific beach towns of Puerto Escondido and Puerto Angel to Oaxaca city, the state capital. There are few guardrails, even fewer phones and no streetlights. The public trucks ferrying passengers also are few and far between. For residents of the poor indigenous communities around here, a journey that should take six to eight hours can take twice as long. That includes hours of walking in the rain to and from remote villages.
Imagine now having HIV and being very ill, suffering as many do from serious diarrheal diseases, high fevers, tuberculosis or lung infections. Little medical treatment is available in the mountains and only basic care in coastal towns. Patients suspected of having HIV are automatically referred to Oaxaca city for testing and treatment. Many arrive in late stages of AIDS, completely unaware of having HIV. That is, if they make it down the mountain. The length and cost of the trip alone rule out seeking medical treatment for some, say activists. For others, the cost of shelter and food in the city is a major obstacle.
"We are in a bad situation because it’s a huge coast and everything along it is totally unprotected in terms of health services," explained Alfredo Ramos Garcia, a Oaxacan member of Frenpavih (National Front of People with HIV), a national PWA network. "It’s impossible for a patient in a terminal stage to come to the city of Oaxaca for medicine. If they must cross one road, then the other, it can take up to 15 hours." It is no surprise, say activists, that rural residents die uncommonly fast, progressing from diagnosis to death in two years. Frenpavih and other groups recently lobbied the state Secretary of Health to set up emergency plans to help persons with AIDS in Oaxaca’s most affected zones.
"There are two worlds, two completely different realities when it comes to AIDS in Mexico," reported Dr. Gustavo Reyes-Teran, a native of Oaxaca who is an HIV specialist at Mexico City’s leading respiratory hospital. "You cannot compare what you find in Oaxaca to Mexico City. Unfortunately, what exists up in the mountains is the truer picture. There you find a lack of infrastructure and medical attention, lack of training of doctors, and totally inadequate combinations of drugs prescribed for HIV. This is what we see in a huge percentage of cases. Patients are not only dying of AIDS, but are dying without any medical attention at all."
The distance between coast, high mountain and city is as great as the estimates of Mexico’s AIDS problem. The government puts the official figure at 46,000 AIDS cases, based partly on death and disability certificates. Registered HIV cases number around 150,000. But others say that number is way off, and HIV rates may be ten times higher. "I say there are no fewer than 450,000 people with HIV and most of them don’t know it," said Dr. Reyes-Teran. "They are poor and what is going to happen to them? We’ll see them here in five or six years when they are dying of HIV wasting."
Activists agree with that estimate. "The problem is that the government intentionally doesn’t gather statistics," added Armando Belmares Sarabia, a former state legislator from Puerto Escondido and a leader in local AIDS efforts. "As they see it, if we don’t have statistics, then we don’t have a problem and we don’t have to put our money into that," he stated. "There is money in the state, but it is far from adequate. They are denying the problem and it just becomes harder to manage." Early on, the epidemic affected mostly gay and bisexual men in the capital and bigger cities. Now it has moved to rural parts and affects mainly heterosexuals, though activists believe that closeted bisexual cases constitute a portion. A growing percentage of women make up the newly exposed.
Like other countries, Mexico has begun to tackle the enormous challenge of providing life-saving HIV medicine to this growing rural population. The government says that an estimated 60% of eligible Mexicans with AIDS are getting free drugs through the Social Security system. Of course, that leaves out 40% who don’t qualify. And then there are those who are not part of the Social Security system. Among the ineligible are farmers, fishers and others who work for themselves.
The lucky ones getting treatment are mostly in the national capital. Many states have waiting lists for HIV medicines and even for drugs to manage opportunistic infections, Right now, there are only two state-run treatment programs outside of Mexico City distributing HIV drugs for free, one in Oaxaca city, the other in Guadalajara. As activists and health officials wrangle over how to speed up access to medicines, Mexico provides a good illustration of how inadequate health infrastructures present a significant barrier.
"The problem with access to medicines in Mexico is only one part of the larger problem that relates to services provided by the Social Security system, which are deficient," said Anuar Luna, director of La Red Mexicana, a national network of people with AIDS that is at the forefront of the access battle. "The problem can’t be appreciated in such an isolated way. There is some money to buy drugs, okay, but not to manage the needs of people with HIV. It’s just that we have more politics than money."
Like many Mexican institutions, the health sector lacks money and is plagued by bureaucracy, corruption and local turf wars. "We do have a serious problem in that there are few people in positions of leadership to really discuss policy regarding treatment and use of HIV drugs," Luna added.
The progressive newspaper La Jornada recently chastised Mexico’s Pres. Vicente Fox for dedicating less than 1% of the national health budget to people with AIDS. He is also cutting the Social Security budget. "If the budget is less than 1%, what does that say?" asked Dr. Reyes-Teran. "If AIDS and TB are priorities, they should assign a lot more money. That hasn’t happened. Yet this issue is one of the most important to public health." Dr. Teran said that AIDS is the leading cause of mortality in young people aged 18 to 40 years at his institute and in many general hospitals in Mexico. It is also the third leading cause of death of youths in the country. "If there is no infrastructure, no financial support, then it’s hard for our fight to succeed."
The state of Oaxaca has 2 million inhabitants, many living in the 7,000 rural localities covering its six regions. These largely poor indigenous communities produce coffee for export. They are struggling to survive the current worldwide slump in coffee prices. Nearly half of the rural population is illiterate, and 15% speak no Spanish at all. Surveys show that few are aware of AIDS. Talking publicly about sexuality is considered taboo by the Indians, and this makes it hard to educate women in particular about health care. "In general there is a great absence of government campaigns to combat HIV," said Belmares Sarabia. "There is a complete ignorance in places that are more remote."
A recent survey by Coesida, Oaxaca’s state AIDS council, said half the state’s 1,637 officially reported HIV cases are in Oaxaca city and the surrounding Central Valley. Coesida stresses that this figure is an underestimate since HIV testing is either unavailable or not offered outside the state capital to confirm suspected HIV infections.
Those who do receive care from village "casas de salud" or community clinics are often referred to one of 14 regional Social Security hospitals, each of which has two infectious disease doctors. Up to now, these physicians have not received specialized HIV training. If they suspect someone of having HIV, they automatically refer them to Coesida. Unfortunately, HIV can be hard to spot based on symptoms alone, since weight loss, diarrhea, or pulmonary problems commonly affect non-HIV patients.
"Basically they become infected and have opportunistic infections and many just die," said Belmares Sarabia in Puerto Escondido. "If you see the statistics, they have a short second stage. Between infection and death, it can be two years, maybe three or four. It is far from the famous ten years that is the average in the U.S." Others like Dr. Reyes-Teran report a similar short time period between primary infection and the onset of AIDS in poor Mexican patients, often because they fail to get medical attention until they are very sick.
That is the grim picture, seen from below the mountain. From up above, remote indigenous communities have always had to fend for themselves. Their customs and healing practices represent elements of local or community-based infrastructures that could be built up to better deliver HIV care. Along with the "casas de salud," there are trained midwives and lay birth attendants who assist pregnant women. The forests are rich with medicinal plants that work well against a range of infections and can strengthen the body.
Targeting midwives and traditional healers for HIV education and training could promote wellness and increase the identification of people with HIV before they become too sick. The local caregivers could provide long-term support to patients on therapy while providing critical information about the epidemic. In Juchitan, where a majority of Zapotecan Indians live, the community has been active in HIV prevention. A substantial number of transgendered individuals live in Juchitan, where they are openly accepted by the community. They have led the AIDS fight in the area and raised awareness about the disease among other Indian groups.
Such a community-based approach demands a shift in the official mentality, away from federal and state control of resources. For years, though, Mexico’s Indian communities have violently battled the federal government and local authorities over land disputes and the government’s lack of attention to their needs. The national administration is not likely to embrace Indian community leadership of the rural AIDS effort. The nation’s health infrastructure may be weak, but historical political structures are firmly intact.
The woman whom everyone comes to see in Oaxaca city is a bit more optimistic about the pace of change. "Oaxaca is one of the lucky states because the political will has existed here since 1996," explained Dr. Gabriela Velásquez Rosas, an infectious disease specialist who heads Coesida. Coesida was set up in 1994 and provides a range of services including HIV testing, support groups, legal advocacy, medical care and, increasingly, HIV therapy. From 1996 to 1999, a small number of Coesida patients were given two-drug therapy. In 2000, triple drug combinations without protease inhibitors became available. The federal government provided money to cover 89 patients just this past May. The figure was up to 120 as of June, and another 80 persons with HIV were slated to begin therapy.
Compared to other nongovernmental organizations (NGOs), Coesida spends 75% of its small budget on treatment and it provides services to patients with or without Social Security benefits. Referred patients are given an HIV rapid test and basic blood work. Blood samples are sent to Dr. Teran in Mexico City for CD4 count and viral load testing.
In Oaxaca, a CD4 count test costs 350 pesos (US $35), and a viral load test costs 1,300 pesos (US $130). "The issue of the lab is the hardest part," said Dr. Velásquez Rosas, who notes that patient follow-up is hard without diagnostics, especially for those outside the city. She confirmed that many rural patients arrive at the Coesida clinic in declining health. Aside from weight loss and diarrhea, TB and PCP pneumonia are common first symptoms. Later on, people have cytomegalovirus.
"Only infectious disease specialists and internists should manage these patients," she added, since few community doctors have had HIV training. "The only thing they can do is make sure [patients] are taking their medicine. If they show up with an OI, they will send them back here or attend to them. But they aren’t trained to follow them on treatment." Velásquez Rosas is focusing on training the 28 local infectious disease doctors in Social Security hospitals, from which she wants to begin distributing HIV therapy. The time frame? "Soon, I hope," she exclaimed. Right now, money is tight.
To date, those who have received therapy are doing well. But food and diet is a problem. "The overall nutrition of patients is an issue because they are poor," said the Coesida director, adding that many Indians survive on a tortilla diet with too little protein. They have limited access to clean water, which increases their exposure to pathogens.
Back in Puerto Escondido, Belmares Sarabia said that the state Coesida program has a good reputation, but he has heard criticism: "Everyone who is referred there is treated with a limited number of antiretrovirals… The other complaint is that there is not a continuous supply and that necessary lab work is not done there, like viral load."
These problems stem from funding shortages and from what he called an overall lack of activism in Oaxaca. "This is the most difficult thing, to mobilize people to demand care," Belmares Sarabia observed. "I see the absence of treatment options as the biggest problem because prevention itself is very limiting."
Behind its well guarded walls, the Institute for Respiratory Infections in Mexico City is indeed a world apart. It is one of ten federal health institutes, on a par with the National Institutes of Health in the U.S. At IRI, Dr. Reyes-Teran provides patients with state of the art HIV care and conducts HIV/AIDS clinical trials. The institute has the biggest HIV caseload of any public hospital. That is because PCP pneumonia is the top killer of Mexicans with AIDS. TB is high on the list too.
Nearby there is a cancer hospital where women with HIV are seen. Children are treated at the Pediatric and Infants Hospital. Others are seen in the myriad branches of the public and private health sector. "We don’t know how many people are getting treatment," said Dr. Reyes-Teran. "There are many organisms, and many people get treatment through NGOs." Nor do doctors meet formally to compare notes. "There hasn’t been a way for all doctors working on AIDS to come together to assess the national situation, as of yet," he said. "That’s a problem."
In the capital, "Seventy-five percent of those who should get treatment are getting it," Dr. Reyes-Teran estimated. He has 150 patients on therapy, roughly half his overall HIV caseload, and they are doing well.
"Things have been changing here," he said. "Not a patient in this institution was getting HIV drugs three years ago. Now all my patients get them. It doesn’t cost them anything. As soon as we were able to offer treatment, as we’ve seen in other countries, OIs dropped, the rate of death decreased, and survival increased significantly." To date, the main problems have been similar to those experienced by U.S. patients: difficulties with adherence and drug side effects. "We’ve had anemia and liver-associated problems with some drugs like indinavir, and hepatitis with protease drugs that has been fatal in three cases out of 300 in this institution," Dr. Reyes-Teran reported. Unlike other countries, he stressed, "The incidence of hepatitis B and C in our population is low."
Down the street, Dr. Patricia Volkow Fernandez has had similar success with HIV therapy in a growing cohort of women in the cancer hospital. Many early female cases were exposed through blood transfusions. Others were among paid donors who sold their blood cells to commercial blood products centers and, as is notorious in China, received HIV-contaminated pooled plasma in return. Most of these have now died. Her new patients are exposed through heterosexual sex, mostly from their husbands.
HIV testing of pregnant women is not mandatory in Mexico, but routinely offered and accepted in bigger centers. So is prophylactic therapy to prevent maternal to child transmission (MTCT).
In Dr. Volkow Fernandez’s clinic, having children remains a paramount concern for HIV-positive women, and a hot topic in support groups. Off the record, some activists in Mexico say that illegal abortions have been common among positive women who cannot access HIV drugs. At Coesida in Oaxaca, Dr. Velásquez Rosas has not seen that problem. Only 22 pregnant women have tested positive there. All of them received MTCT prophylaxis. Most of the children were born HIV-negative, but Dr. Velásquez Rosas warned that post-natal transmission of through breastfeeding has occurred. It remains a serious hurdle."
In other health centers, the problems are myriad. "The main problem, apart from absolute lack of access to drugs for many people, is the infrastructure for health care, which for follow-up care, is really bad for many diseases," Dr. Reyes-Teran stated. As in Oaxaca, the lack of HIV diagnostic tools limits proper monitoring. Coinfection with TB, including multidrug-resistant TB, also remains worrisome in HIV patients. Between 5% and 8% of Dr. Reyes-Teran’s coinfected patients have pretreatment resistance to two TB drugs, rifampin and isoniazid, the same level as his non-HIV TB patients. "Vigilance of the liver is very important," he stressed. "But there are few centers who do strict monitoring like we do."
Like Belmares Sarabia, the rapid progress of HIV in many patients has caught Reyes-Teran’s attention: "We believe the evolution of the virus is faster in Mexico than in other countries like the United States. In our [pretherapy] cohort, three-quarters of our patients evolved to have AIDS in less than five years." He is now doing research to find out if genetic factors could be involved. He also is studying nutrition and immune responses in patients on therapy.
Looking ahead, Dr. Reyes-Teran believes too that political activism is the only way to rapidly improve the situation. Infrastructure problems exist, but they can be addressed. Lack of political will is the major impediment. "There needs to be a raising of consciousness of public officials. We need a national strategy. The way things are going now, with the health authorities, I don’t think we can effectively confront and control the AIDS epidemic in Mexico. Instead we are likely to have a greater problem [than in the United States] with the improper use of medicines and multiple-drug resistance." One source of help and cash could be Mexico’s northern neighbor. "I think organizations in the U.S. should help us a lot because the problem of resistance is going to penetrate the U.S.," he predicted. "It’s in our common interest."
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