Article

Deadly Bureaucracy
Dominican Republic Retreats from 3 by 5 Commitments, Lowers ARV Access Goals

The two of us held tightly to the moto-taxi driver and handrail as the rusty old bike sputtered along the dirt road leading to a middle class neighborhood on the outskirts of Higuey, an agricultural town in the easternmost corner of the Dominican Republic. We paid 40 pesos, about a dollar, and the moto zipped away.

Irene Ramirez*, an HIV-positive mother, leader and activist from the nearby city of La Romana and I were soon met by Alejandra Sanchez. Alejandra greeted us, and welcomed us into her home. She prepared plastic chairs, and begged us to please sit down.

Alejandra* is the founder of a support group consisting of 40 individuals, mostly of women living with HIV or AIDS in Higuey. She related that of these 40, only she and another woman were currently receiving antiretroviral (ARV) therapy. Both were paying for the therapy and their own tests and doctors’ fees out-of-pocket, without any assistance. Alejandra confessed that she was periodically obligated to buy her medicines on the black market from another person living with AIDS, who offered his own treatment to her at reduced prices.

Still, even the minimal package of generic ARVs, vitamin supplements, expensive lab tests needed to monitor viral load and CD4+ counts, and transport to the clinic is too costly for the vast majority of people living with AIDS in the Dominican Republic to pay for themselves. Economic security for people living with AIDS is further challenged by the fact that employers in the area, including resort hotel owners and factories in special Free Trade Zones, regularly break the law nominally protecting people living with AIDS here. They routinely fire workers found to be HIV-positive and require an HIV test before hiring new employees. Most of the HIV-positive men and women I have met here are poor and unemployed, which they attribute in significant part to workplace and employer discrimination. This forces some into less regulated commercial sex work.

Even more seriously, Alejandra stressed that she personally knew 15 to 20 of the others, many highly sensitized and longtime members of the group, who already showed signs of AIDS defining illnesses, such as wasting and weight-loss, and some had been hospitalized for opportunistic infections. Urgently needing but without access to ARV treatment, many of them might not live more than six months to a year without these medicines.

Nationally, there are an estimated 88,000 people living with HIV/AIDS in the Dominican Republic, according to the 2004 UNAIDS report. At least 10,000 people living with AIDS currently need antiretroviral treatment. Yet barely 600 (6 percent) receive medicines in publicly funded treatment centers. Of the more than 9,400 others who need treatment now, and more than 80,000 others who may need it in the future, most have incomplete or no access to antiretroviral treatment, medicines for opportunistic infections, or lab tests physicians use to place patients on ARVs at the appropriate time and monitor progress.

Many blame the lack of significant political will and the previous administration's notorious ineffectiveness for the current situation. Expectations for scaling up treatment access here have been lowered repeatedly, from the goal of 2,000 people on ARVs by the end of 2003 to 1,500 in 2004 and now to 1,000. Now several of the coordinating agencies express doubts if there will even be 700 people enrolled in the National Program by the end of 2004. These expectations run counter to the WHO's well publicized "3 by 5" plan designed to dramatically increase numbers of people living with AIDS (PLWAs) who have ARV access by 2005.

However, there are numerous other institutions with tremendous resources, capacity and influence — all of which must do much more, as they have committed to working for scaling up treatment access here. For example, the Clinton Foundation secured and provides the cheapest available medicines from generic manufactures, which are now distributed in at least 12 sites throughout the country. Columbia University has provided technical assistance in areas like establishing national guidelines, training health workers, and looking at adverse effects for patients on ARVs. In press releases, websites and bulletins, both Columbia and the Clinton Foundation regularly promote their respective institution's programs and commitments. Unfortunately, neither publicly disseminates candid, accurate and up-to-date information about the real needs and lack of progress to date as widely in similar media channels.

Many here criticize the Clinton Foundation for providing false hopes when it announced its ambitious plans for supporting the national program and providing thousands access to lowcost antiretroviral treatment. The Clinton Foundation is currently supplying mostly generic ARV medicines for 600 people here. But they claim that they are not a traditional donor agency and, without additional resources from other sources here (primarily from the Global Fund), they are currently unable to purchase or supply ARV medicines for more than the maximum 700 total people this year that they negotiated reduced drug prices for. According to Crispin Carrasco, the country director in the Dominican Republic for the Clinton Foundation, it would only cost about $300,000 to resolve current waiting lists and ambitiously scale up access in 12 centers throughout the country for the rest of this year.

USAID, which is one of the main donors for HIV/AIDS programs here, sponsors a diverse range of projects — upgrading clinics, training youths and counselors for prevention and education campaigns, and collaborating with religious groups, among other efforts while providing $35 million dollars for HIV/AIDS over five years. In early October 2004, US Department of Health and Human Services chief Tommy Thompson, US Global AIDS Coordinator Ambassador Randall Tobias, US Surgeon General Richard Carmona paid a special visit to Hans Hertell, US Ambassador to the Dominican Republic, and announced the donation of an additional $54 million for the fight against HIV/AIDS. Unfortunately, and fatally for many people living with AIDS, restrictive clauses to such USAID funding has prevented any of these resources from being used towards the purchase of ARV medicines.

USAID also finances an NGO called Conecta, which coordinates and provides technical and financial support to NGOs and government health programs. Conecta has assumed temporary financial responsibility for certain lab procedures like CD4+ and viral load tests for a very limited number of people living with AIDS registered in the National Program. However, the agency has been paying well above the market rates, paying about $100 per CD4+ test and considerably more for the viral load, although CD4 tests typically cost only $5 to $30 in most countries in the region. With excuses of "limited funds," and need for greater control, the tedious bureaucracy associated with obtaining these tests has also created severe bottlenecks and waiting lists that cripple the national program and reduce timely access to the tests throughout the country.

Often unable to pay out-of-pocket for the same test, which would ensure them speedier results, many people living with AIDS find themselves returning numerous times to centers in order to be placed on a waiting list, again to find out when they will be allowed to take the CD4+ test, and then again to obtain the results.

With such inefficiencies, many people living with AIDS lose patience as a result; some never return, while others switch sites and enroll elsewhere to take the test again. Worse still, many are hospitalized and, near death (if even then), before they can be authorized to take the test and obtain results indicating they must start ARV treatment. Guidelines provided by the World Health Organization for "resource-poor countries" suggest beginning ARV treatment in symptomatic HIV-positive individuals, without waiting for CD4 test results. Still, government programs, international donors, lab facilities, and companies supplying reagents and equipment for such tests must reinforce their commitments to people living with AIDS and assure that these tests are widely available to those who need them, not simply a luxury purchased by those who can afford it.

The pharmaceutical companies also exercise great influence. Indian companies like CIPLA entered into special agreements with the Clinton Foundation, providing their cheapest prices for their generic medicines, which most of 600 people enrolled in the national program currently receive. These same prices should also be unequivocally offered to local NGOs and the National AIDS Commission (COPRESIDA) for ARV purchases with money from the Global Fund. With few ARVs currently available in the public sector, for many there is no alternative except to purchase generic medicines through local pharmacies. But these local distributors charge five to six times the price for the same product offered to the Clinton Foundation. Few here can afford to pay for such pills that cost $800-$1,000 per year, as opposed to the $150 cost secured by the Clinton Foundation.

Also, serious misinformation and concerns about bioequivalence and recent WHO disqualification of certain CIPLA and other generics need to be addressed in order to prevent confusion and assure patients and physicians (who often have little choice in the matter) of the safety and quality of generic antiretroviral medicines in the future. The Brazilian Government has also offered to donate stocks its own generic medicines and provide complete ARV therapy here for 100 pregnant women who are HIV-positive.

Certain manufacturers of patented medicines, like Merck, have committed to reduce the price for ARV medicines, like Stocrin (Efavirenz), a drug commonly used in first line ARV cocktails. They are also providing the lowest available prices they offer globally to both the Clinton Foundation and nationally in the Dominican Republic. Still, doctors report that while Efavirenz is used in preferred first line treatment combinations, it isn't widely available through the national program.

Other companies (including Pfizer, Abbott, and Roche) either refuse to include the Dominican Republic in special access programs, or continue charging prices which make their essential medicines and lab products all but out of reach for inclusion in public health budgets — even for the relatively limited numbers of patients who might need such treatments.

For example, a group of nuns that manage the Casa Rosada, a well-known orphanage, has provided ARV medicine and care for children living with AIDS in Santo Domingo. They offered documentation to Agua Buena that prices in Dominican pesos for Abbott's Kaletra — even with a special discount offered by a local distributor —have doubled over the past year. The government coordinating unit (UCAI) has incorporated 11 new children at Casa Rosada into the national program and provided them with generic ARVs medicines. But they have also stated that they cannot assume the cost of the remaining 22 children who started with different therapeutic regimes, primarily due to the high costs of brand-name drugs, including Kaletra.

The nuns at the religous charity Casa Rosada say that private donations have decreased recently, and the entire program is in jeopardy. They can barely afford the escalating cost of ARV therapy for the 22 children initially covered, which has risen to over $60,000 dollars per year just for the medicines for these children alone. Despite the national economic crisis and treatment needs like those at Casa Rosada and elsewhere, Abbott refuses to include the Dominican Republic in its Access to HIV Care Program. This would free up new resources for scaling up treatment access, by providing lower prices for Kaletra and other ARV medicines.

Another highly profitable pharmaceutical company, Gilead, has performed clinical trials that have helped in evaluating and approving its popular new drug Viread here in Santo Domingo for the past four years. Still, despite promoting its commitment through the company's philanthropic global access programs, Gilead won't include the Dominican Republic in the list of countries eligible for its access program for Viread (tenofovir), and reportedly doesn't even market this drug in the country.

Several important programs have been established by UNAIDS, UNICEF, UNFPA, UNDP, GTZ, PAHO/WHO and the Spanish Cooperation, in addition to resources from the Catholic Church, the private sector, a $25 million dollar loan from the World Bank for HIV/AIDS several years ago, and the Dominican government's own public health sector budget. But, disastrously, these agencies have been unable to coordinate better access to treatment. Stipulations in the World Bank loan prohibit the country from using these resources for the purchase of ARV treatment. Although UNAIDS and PAHO have special mandates to support the WHO’s 3 by 5 program, their impact in the Dominican Republic has been negligible.

The Global Fund proposal, which would provide over $40 million during a five-year period, was approved here in January 2003, with the objective of quickly increasing resources available for the purchase of ARV treatment. Yet, in October 2004, over 20 months later, none of this money has been received for treatment and no ARVs have been purchased. Bureaucratic procedures and internal conflicts between the Global Fund, different agencies and COPRESIDA, the principal recipient of Fund monies, have resulted in delays and the deaths of thousands. Currently, it is still not clear when these resources will become available.

The combined result of all of these agencies and resources is dismal and insufficient — translating into a national program that has not been able to provide more than 600 people with ARV treatment to date. Extraordinary measures must be taken in order for these institutions to move forward with the appropriate dynamism and ambition needed to empower local actors and overcome the current crisis. For the sake of thousands more people living with AIDS here — and their families and children — medicines, lab tests, counseling and appropriate social services must be made swiftly available. A month or year or two from now will be too late.

(*Names changed to respect the confidentiality of individuals in provincial cities mentioned above)

For more information, please contact Eugene Schiff, Caribbean Region Coordinator, Agua Buena Human Rights Association http://www.aguabuena.org or iecs96i@aol.com

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