Published: Julio 20, 2005
Accessing ARV treatment in the Dominican Republic: A Case History
By Eugene Schiff*
Agua Buena Human Rights Association
As we sat together in the cramped and swelteringly hot public clinic a few months ago, Antonio told me he had lost weight, and now weighed just 108 pounds. He had severe anemia and a fungal infection I could see had spread to most of his fingernails, his toes, and the inside and outside of his mouth. His entire body--face, arms, chest, and legs—was painfully thin, showing characteristic signs of wasting due to untreated, end-stage AIDS. He was slow to speak, walk, and respond to questions, but he made the effort to do so nonetheless. Despite his noticeable weakness and the fact that he had been waiting for about three hours, since well before the physicians had arrived and the clinic had opened, he was not attended to promptly, and we were among the last to leave the clinic. Since he had been sick, between the second half of 2004 and early 2005 he had visited the Centro Sanitario in Santo Domingo at least a dozen times, yet still had no access to appropriate treatment.
Antonio lives in Guanuma, a poor rural community less than an hour from Santo Domingo. He is 38 years old, and has courageously been fighting the ravages of full blown, untreated AIDS and associated infections, which attack and debilitate the immune system and the rest of the body. Perhaps much more important however, and an essential reason I am able to write up these experiences at all, is his unsung courage in trying to break the strong stigma that pressures many poor rural Dominicans to deny or keep the fact they are HIV+ a secret. Also important in Antonio’s case is his special interest and amazing struggle to obtain antiretroviral treatment, medicines that can save and prolong his life.
Guanuma, I am told, and many neighboring settlements were once surrounded by sugar cane as far as the eye could see, which attracted thousands of Haitian men to labor in the expansive sugar fields in order to cut the stalks of cane. Dominicans consider this poorly paying and extraordinarily demanding physical labor to be akin to slavery, and therefore have long reserved such work for the Haitians. In early April 2005, I learned in another bateye in the Eastern region of the Dominican Republic that Haitian workers are currently paid just $1.50 for each ton of cane they cut by hand and hauled to the scale.
Especially now, with the sugar industry declining, Guanuma and several other nearby bateyes, are some of the poorest settlements in the entire country. Several of the distinctive orginal barrancones, rows of very basic wooden or cinderblock rooms intended for seasonal male laborers but currently often inhabited by entire families, still remain. They offer a defining social and architectural characteristic to life in the bateye, with residents sitting in chairs or along the small concrete floor against the linear façade. However, the recently privatized sugar industry, historically the main source of employment and income for those living in these settlements, has stagnated and largely disappeared from this area, intensifying the economic pressures and overall poverty of many of those who remain on the bateyes.
When we first met several months ago at his home in Guanuma, Anotonio was particularly frail. He repeatedly made considerable effort in order to cough. He was too weak to get up, so we exchanged introductions as he was lying in his bed, separated from us and a few flies that were periodically circling the room by a thin white mosquito net. It was a little past 5:30 in the afternoon -- a special time of day as heat dissipates somewhat and the Caribbean sun begins to magically glow as it falls and sets over the Dominican countryside.
The small room didn’t have much ventilation, and it was soon evident that the exhaust from the old car that a neighbor was trying to fix in a nearby makeshift garage (literally right outside the window) was contaminating the air and contributing to Antonio’s persistent cough. After five or ten minutes I could also feel myself become short of breath due to the fumes and lack of fresh air. Antonio and his family members seemed aware of the problem, but expressed there was little that could be done.
Although one might never need to experience it from the wealthier neighborhoods or the confines of the many luxury resort hotels that outlandishly dot the island’s coast, such crowded, difficult, and often impoverished living conditions are a fact of life for many Dominicans. Like Antonio’s, the majority of families on the island living in both rural and urban areas are accustomed to having a limited amount personal space, limited options for earning a decent wage, substandard housing, poor access to health care, and poor plumbing and sewage. Many residents are accustomed to the ritual of lighting candles, lanterns or sitting outside in the shade (sometimes playing dominoes, baseball in the street, drinking the local rum or Presidente beer) watching the day pass, partly in response to lack of employment, the tropical heat, and lack of electricity.
Many poor Dominicans don’t pay electric bills since the government technically subsidizes their power usage, but the system does not work very well, and anyone who lives in a poor neighborhood receives even more sporadic (and much less) electricity. Every day, without exception (including Christmas Eve), numerous extended blackouts for periods of several hours and sometimes up to 15 or even 20 hours a day are common, since the private companies which lucratively control the power grid cut off electricity several times daily throughout most of the island. For businesses and the fortunate few, hot, noisy, stinky, and heavily polluting private generators allow freezers, air-conditioners, irons, computers, hair-dryers, microwaves, and other appliances to run at any hour of day.
Throughout the island there is also limited access to clean drinking water. Drinking water has also been privatized, and as is similarly true in many of the poorest countries in the region, it must be purchased in big blue containers (or overpriced smaller ones), which are stocked and must be hauled in from the nearest neighborhood grocery store, as tap water is generally considered to be contaminated with parasites and bacteria. Those who cannot afford to buy the water, or have run out, often have no choice but drink dirty water and risk becoming sick.
Public transport can also be an uncomfortable endeavor, one that many endure. It often involves sharing small, hot, battered cars, aging minivans or used Korean buses which try to pack in many passengers as physically possible in order to increase the driver’s and company’s profit. One of the most common forms of transport for many in Santo Domingo are ancient, dirty, severely dented, and rusting conchos- small public cars which run on propane cooking gas. These cars squeeze two adult passengers into the front passenger seat and four in the back. Motoconchos, motorcycles carrying 2, 3, or even 4 people including infants and children are also a common but dangerous form of transportation in many rural areas and smaller cities along the coast.
Many poor Dominicans have an amazing resilience to enjoy themselves and make the best of such circumstances, but “ordinary” inconveniences and the realities of poverty often prove particularly cruel and ultimately fatal for people living with HIV/AIDS. They and their weakened immune systems are even more susceptible to opportunistic infections from contaminants, bacteria, viruses, endemic diseases, and other bugs in the air, water, food, countryside, or dirty, overcrowded city streets. Many of those living with HIV are poor and a substantial percentage of them are unemployed or underemployed. They are less likely to be able to afford to pay extra money for an appropriately nutritious diet, the rising cost of transportation, clothes, phone calls, school fees, and provide adequate support for their children and family.
As result, many people living with HIV/AIDS cannot realistically afford to pay the considerable additional often largely privatized costs for their own health care. Even the dilapidated “public” health care sector almost always includes hefty out of pocket payments for essential but potentially costly medicines to treat or prevent opportunistic infections, an array of critical and recommended diagnostic lab tests, and lifesaving ARV medicines for the rest of their lives. It is essential that these services become more accessible to the ten or twenty thousand Dominicans who currently need but lack antiretroviral medicines. There is also an urgent need for improved medical care for Haitians migrants, and Dominicans of Haitian ancestry who are living and working in the Dominican Republic. However, the shameful and difficult reality that many Haitians and Dominicans living with and dying of AIDS experience in the country’s public hospitals is sad story indeed.
The Sexually Transmitted Diseases unit at the Centro Sanitario, in the quiet, middle class neighborhood of Gazcue in Santo Domingo, is ironically just a block away from the luxurious National Palace, office of the president and the administrative headquarters of the Dominican Government. The public clinic has provided care to poor people living with AIDS in the Dominican Republic ever since the epidemic started over 20 years ago. Some of the staff at the HIV/AIDS clinic proudly express that they have been working there almost as long, in many ways an exceptional commitment in itself, irrespective of clinic’s numerous problems and the serious needs remaining. Administrators and physicians at the Centro Sanitario sometimes boast that the clinic receives more people living with AIDS than any other site in the country, with the center holding medical records for over 3000 HIV+ patients.
By the end of April, 2005, only 150 of these were receiving ARV medicines at the Centro Sanitario. HIV+ activists and physicians not affiliated with the Centro Sanitario claim that the small clinic cannot possibly continue to provide care for all these people, and that as many as 1000 of those may have died. The activists insist to me that they themselves would no longer be alive or speaking to me if they had entrusted their care to the physicians at the Centro Sanitario.
In the case of Antonio, by the time I first met him and found him bedridden in his home, he had already visited the Centro Sanitario nearly a dozen times, yet he had not received a CD4 test, and he didn’t seem to understand when I asked him if he was receiving antiretroviral medicines – although he showed me a bag of other pills, including acetaminophen, and some multivitamins, and ketoconazole (which is used to treat fungal infections). It was evident just by looking at him and seeing his weight loss, his severe anemia, fungal infection, mild dementia, and his lack of appetite that his immune system was failing and he should be receiving ARV medicines, which could have, if administered in a timely manner, most likely have prevented such painful and potentially fatal infections.
Months later, even though he could barely walk, Antonio continued returning to his scheduled appointments at the Centro Sanitario, but still had not received ARV medicines. By this time, he had gone to another private clinic, and paid for his own CD4 test. Although health administrators running the National AIDS Program claim that CD4 tests are included and provided for free, this is generally untrue in practice for many of the tens of thousands of PLWA in the Dominican Republic, especially the majority who are poor and have no special connections.
Without special advocacy by a physician or PLWA support group, it is often impossible to receive such procedures like CD4 testing and Viral Load without paying up to $200 in overpriced for-profit private clinics. Despite the obvious importance of these diagnostic tests, without which many physicians will not or cannot start PLWA on ARV treatment, the tests are only available through privately contracted labs. USAID and the government had been paying even higher prices to one such lab through a corrupt agreement, up to $100 dollars per CD4 test, which therefore limited the number of tests, making them available to only a minority of those who needed them. Apparently the “national lab” is still not equipped with appropriate machines and may not be ready until 2006.
It is perplexing that the numerous government and international agencies which provide technical support to the National HIV/AIDS program have still been unable to create a more efficient and sustainable lab capacity in the public sector. Yet such realities are barely mentioned in conference presentations, press releases, and programs touting international partnerships, technical assistance, collaborative capacity building efforts, technology transfer, and treatment scale up initiatives, like the WHO 3x5 program, which several years ago were launched in order to significantly increase access to ARV treatment and improve the quality of care for people living with AIDS (PLWA) by 2005.
For Antonio, he was already very sick when his family was able to pull together $25 dollars for his CD4 test at the Instituto Dominicano de Estudios Virologicos (IDEV), after first being directed to another clinic charging approximately $70 for the same procedure (the Clinton Foundation and more committed governments in other countries in the region have been able to reduce the costs of the chemical reagents to as little as five dollars per CD4 test). Despite Antonio’s condition, he received little such support from the Centro Sanitario or the National Program, or anyone else for his CD4 test, and in fact languished pointlessly on the notorious government waiting lists several months before his family finally members paid for the procedure themselves.
Ultimately, by the time he made it to the IDEV, the results of his CD4 test came back to be 30. In healthy adults, normal CD4 counts range between 500 and 1500. For PLWA international guidelines explicitly recommend starting ARV treatment when CD4 counts fall below 200, and allow physicians to consider initiating therapy for CD4 below 350. A CD4 count of 30 indicates the immune system is severely compromised. Studies have shown that chances of survival are much lower as one’s CD4 decreases below 50 or 100, even if ARV treatment is made available.
A couple months ago I accompanied to the Antonio to the Centro Sanitario hoping to help get him access to antiretroviral medicines and figure out why he hadn’t received any thus far. I knew (as did the staff there) how long Antonio had been waiting, how many times he had returned to the clinic, that his CD4 count was 30, and that he shouldn’t only be treated for his opportunistic infections again but that he needed ARV medicines. I also knew, as the health workers must have, that it was clearly difficult and discouraging for him and his family to continue coming back to the clinic and into Santo Domingo so many times without receiving these essential life-saving medicines. His father often accompanied him, as well as his brother in law, who needed to take off a significant portion of the working day as a concho driver since Antonio was too weak to take the bus.
That day, we waited for over an hour and a half, and Antonio was one of the last patients to be seen. Furthermore, seemingly annoyed by the fact that I had come to the clinic and dared to question her judgment, the doctor in charge adamantly insisted that Antonio was not ready yet to begin ARVs, she even repudiated me, insisting that I did not understand the meaning of adherence, that there certain are procedures that they followed, there was no urgency at this point, and she threatened that Antonio might need to come back 10 more times before he was “ready” for ARVs. Antonio was given a few pills of fluconazole for his fungal infection, although not enough to last until the next visit, and a book so that he could read about ARV medicines. We were sent away, once again without ARVs. Antonio was told to come back the next week.
The following week Antonio returned to Santo Domingo on Monday to the Centro Sanitario in order to perform a few routine lab tests. However, he was unable to visit the doctor at the same time since this was not the day of his appointment, and staff express that the Centro Sanitario nearly always full. On that day and the other days I visited, it seemed that the hours of the Centro Sanitario are from about 2pm to 4pm or 4:30pm. Physicians in the public health sector complain of low wages, but they often work just an hour or two a day, in either the morning or the afternoon before attending to their own private practice or second, better paying job.
This is a real inconvenience for people living with AIDS, many of whom must arrive early, well before the clinic opens and doctors arrive, in order to assure they will not be turned away. Those who show up around and after 4pm are frequently turned back, told to come another day. For those unable to come to the clinic between the hours of 2pm and 4pm, most are out of luck, or need to adjust their schedule. I was told that physicians have repeatedly and effectively resisted efforts to extend the hours of care provided at the Centro Sanitario. It is an interesting spectacle indeed to observe the patients who mostly arrive first on foot or by public transport, waiting forlornly, and watch the mostly empty parking lot transform around 2pm and begin fill up with a dozen or two cars, including many of the doctor’s SUVs, which have mostly disappeared again by half past four.
There are many other inconveniences evident from visiting the Centro Sanitario, and these are known to all who have spent any time there, yet they must urgently must be considered and addressed. It both paradoxical yet perfectly understandable when one sadly comprehends the misguided priorities of Dominican authorities and international agencies, including even Columbia University which has been providing technical assistance to the government, that twenty years into the HIV epidemic such a center could still exist and be the largest care provider for people living with AIDS in the Dominican Republic.
In the half a dozen or more times I have visited the Centro Sanitario, there has never been electricity, which apparently comes infrequently due to the habitual power cuts in the afternoon. Lab tests cannot be run, and there are no lights, no fans, computers or other equipment that might be useful to run a clinic and care for patients. The nearby presidential palace has permanent electricity, and I know some of the neighborhoods residents who have illegally hooked up to its power grid. However, neither the government nor the authorities at the Centro Sanitario seem to have been able to come up with a similar solution. The personal cars of most physicians (not to mention those of the politicians nearby) cost much more than a generator and gasoline that could power the entire center, not just the AIDS clinic, yet there is no generator. Public health and the public good is much less a priority than private personal consumption for most of the Dominican elite.
I feel like I already know the 19 dark and twisty steps leading to the outpatient AIDS clinic at the Centro Sanitario very well. In addition to seeing nearly crippled and extremely week individuals labor step by step in order to climb up and down to get to the waiting room, I have also on two occasions had to help individuals down the stairs who were too sick or dehydrated to walk. I helped to carry, along with three or four others, one of them, an elderly and extremely frail woman, down the stairs, without a stretcher, with one person supporting her body from underneath and the others holding up her legs and arms until we could place her in the back of a car. In another case, I felt like I nearly broke my back trying to help a woman down by carrying her in a heavy metal wheel chair which I lowered step by step with the help of another thin patient. Ironically, the waiting room and nearly all the rooms on the first floor are empty, while the outpatient AIDS clinic remains without easy access for the physically weak or disabled. Such scenes like the ones I experienced are extremely commonplace as many sick and dehydrated PLWA come to the Centro Sanitario daily, only some of which are referred to an emergency room, others are sent home with IVs, barely able to walk, all to often without access to ARV medicines, medicines needed for opportunistic infections, or regular CD4 testing.
In the case of Antonio, at least, for now, there is a relatively happy ending. After coming for his lab tests on Monday, Antonio returned the next day, Tuesday, and once again was made to wait over three hours and was one of the last people to leave the clinic. Finally, perhaps at my insistence, although I truly hope not, he was given a week’s worth of ARVs and told to come back the next week, although this time the Centro was out of fluconazole, which Antonio’s family needed to purchase themselves.
The fact that Antonio is poor and comes from a bateye, is not coincidental or irrelevant, but reflect pieces of a much larger and even more serious crisis related HIV/AIDS, treatment access, health care, racism, discrimination, politics, and poverty in the Dominican Republic and in Haiti. The embarrassing treatment he received at the Centro Sanitario reflects deeper problems affecting thousands of people living with AIDS who attend the same small clinic (problems which could and should easily be resolved). Antonio’s story also reflects the experience of many of the hundreds of thousands of people living with AIDS in Hispaniola (Haiti and the Dominican Republic), the most populous island in the Caribbean, and one epicenter of the AIDS epidemic in the Western Hemisphere. While the fact that perhaps a few thousand people are receiving much better care, and their stories could be presented as “success stories” is also true, but this should not distort our analysis and efforts to improve care for the vast majority of PLWA, who are poor, and critically, still remain without access to ARV treatment or appropriate care.
*Eugene Schiff - Caribbean Region Coordinator
Agua Buena Human Rights Association
809-274-6252 (tel/fax - Santo Domingo)
Richard Stern - Agua Buena Director
San Jose, Costa Rica
Guillermo Murillo - Agua Buena Assistant Director
San Jose, Costa Rica
Mabel Martínez - Agua Buena - Centroamérica; Honduras/Nicaragua
Jaime Argueta - Agua Buena - Centroamérica; Guatemala/El Salvador