Published: July 2003
30 MONTHS AFTER GRANT APPROVAL: GLOBAL FUND CONTINUES TO FAIL DOMINICAN PLWA's
In the two and a half years since the once heralded HIV/AIDS Global Fund Grant was approved in the Dominican Republic, extremely little has changed for most Dominicans needing ARV treatment.
By Eugene Schiff*
To the political bosses running the Dominican government, to the well paid elite cadre with comfortable lives managing multimillion dollar HIV/AIDS projects for International Agencies, and to the executives on the Board of the Global Fund to Fight HIV/AIDS, Malaria and Tuberculosis in Geneva, the lives of the vast majority of people living with AIDS in the Dominican Republic must be worth little or nothing at all. There can be no other excuse or explanation for the current tragedy facing over ten thousand people living with AIDS without treatment in the Dominican Republic today.
To review some of the recent history related to the Global Fund in the Dominican Republic provides a telling lesson in the workings of deadly bureaucracy. We could start from a time when many were hopeful treatment access would improve, after the Global Fund HIV/AIDS Grant for the Dominican Republic was approved in January 2003 (in the second round of proposals, the first round of Global Fund grants were approved in April 2002). Yet far from achieving the swift successes and radical change some promised and many hoped for, it is now clear that the Global Fund may actually have been one of the biggest, if not the biggest obstacle for improving treatment access in the Dominican Republic.
The Global Fund’s Promises Become Years of Deadly Bureaucracy
After the grant’s approval in early 2003, it wasn’t until May 18th, 2004, FIFTEEN MONTHS later, that the grant was “signed” between Geneva and the agency finally chosen as the local principal recipient, COPRESIDA. Weeks later, on June 1st 2004, COPRESIDA received the first disbursement of funds from Geneva, but even after the first fifteen month delay, only $227,685 of the $48 million dollars were released, a paltry sum which still didn’t include resources for the purchase of antiretroviral medicines for scaling up treatment access nationwide.
Ironically, all this time, the Dominican government already had considerable funds, over $40 million dollars, specifically provided for HIV/AIDS projects from loans and aid from two other major donors, the World Bank and the United States Agency for International Development. Yet both the Bank and USAID strictly prohibited these resources from being used to purchase ARV medicines, so none were purchased, and tens of thousands more Dominicans died of AIDS during this period.
If it weren’t for a court case brought forward in 2002 by individuals and organizations of people living with AIDS in the Dominican Republic, along with international supporters, including the Agua Buena Human Rights Association in Costa Rica, against the Dominican Government before the International Human Rights Commission, the Dominican government might not have acted to provide ARV medicines to anyone during this entire time. The court decided in favor of the petition and obligated the Dominican government to provide ARV medicines first to a dozen or so and then over a hundred PLWA signatories to the legal demand presented to the Commission.
At this point, the shameful official policy of USAID, the World Bank and therefore most of their local partners, was still that providing antiretroviral treatment for people living with AIDS was not a cost effective use their funds, sending the message that people living with AIDS in the Dominican Republic were out of luck. Ironically though, for these agencies, buying overpriced imported furniture, laptops, office air conditioning units, plane tickets, holding scores of workshops at resort hotels, and renting office space in one of the country’s most expensive addresses was and evidently still is deemed to be very sound investment. For years, the only kind of ARV treatment deemed “sustainable” was that offered to HIV positive women has been a short course of nevirapine to the mother and child to prevent transmission to the baby, more often than not leaving the mother herself (and the fathers) to die of AIDS. Thousands of reports and presentations have and are still being made at international conferences around the world touting the “successes” of these programs.
Building upon the momentum of the PLWA victory in the Inter-American Human Rights Commission, and the Global Found grant approval, in October 2003 the Clinton Foundation HIV/AIDS Initiative came in and provided primarily generic ARV medicines secured from Indian pharmaceutical companies at discount prices for what would amount to about 700 Dominican PLWA. However, this was their limit. Like the other international agencies and the Dominican Government as well, the Clinton Foundation apparently preferred not to have to spend more and more its own resources on the needs of rapidly scaling up the ARV treatment program in the Dominican Republic. It also naively hoped that it wouldn’t have to since the Global Fund grant would soon be disbursed and become operational.
For several months, in the second half of 2004, treatment centers continued to provide medicines to the 700 or so already receiving them, but doctor’s hands were tied as they were unable to secure ARV medicines for most of the increasing number of people who were coming in thinner, sicker, with more AIDS defining symptoms, each visit edging closer to death. Many never came back, as neither the money nor the medicines ever arrived to save their lives.
In October 2004, the second disbursement from the Global Fund was made, but this time, again, instead of the expected $2.5 million dollars, Geneva authorized only $218,294 for release, due to concerns about the local recipient’s ability to manage and account for large sums of money. It wasn’t for another 7 more months, after the 15 months of previous delays and the two tiny releases (amounting to less than $500,000) that in May 2005 the 3rd disbursement finally came from the Global Fund, worth $1.5 million dollars. Just a couple weeks ago, on June 10th, 2005, a fourth disbursement, this time for a considerable $3.6 million, was released from the Fund to the Principal Recipient COPRESIDA (according to information posted on websites published by AIDSPAN www.aidspan.org, and the Global Fund www.theglobalfund.org.
However, unfortunately, if there is one lesson that can be drawn from past failures, it is that despite the millions of dollars that may be available for international HIV/AIDS programs, sometimes in places like the Dominican Republic but more likely in Washington or Geneva, this money, and the drugs and other supplies it could and should be purchasing, may never reach the majority of those who need them most. The money exists in banks, on paper, websites, in projects, proposals, and reports for powerful international institutions and their local partners. But in many cases, like this one, the problems remain and for the most part the medicines have not arrived.
Furthermore, even the current overwhelming needs in the Dominican Republic are rapidly increasing. In a few years many more of the 80,000-150,000 of people living with HIV and AIDS will need access to ARV medicines. According to the Global Fund Website, the government only plans to provide treatment to 6000 people by the end of five years, a miniscule fraction of those who need treatment nationwide. Nobody knows what will happen after that.
It must be noted that these figures usually do not even factor in the markedly worse situation affecting the thousands of HIV+ Haitians living and working the Dominican Republic. Many of these Haitians and their children are almost entirely excluded the census, telephone interviews, the Dominican public health services and the National AIDS Treatment Program. The widespread suffering and abuses against Haitians living in Haiti and especially the Dominican Republic, has long been an acceptable and almost invisible phenomenon to the Dominican authorities and sadly, to much of the population as well. It should therefore come as no surprise that throughout the Dominican Republic in rural bateyes, where Haitian sugar cane cutters and their families live and work, now outdated studies reported some of the highest rates of HIV/AIDS. Anyone who has visited these areas knows these communities nearly always have the least access to basic health services and ARV medicines are virtually unknown.
The Dominican Government: Empty Words and False Promises
In the Dominican Republic, there have been many promises and proclamations about HIV/AIDS by all agencies and political parties. But the years of government inaction, combined with the current lack progress towards greater treatment access, ultimately speaks much more loudly than their recurring pronouncements. Seemingly more frequently in this country than others, leaders and their political appointees regularly make grandiose speeches about fighting HIV/AIDS--speeches that are all too often filled with empty words and false promises. Perhaps they must do so to please the donors.
In order to gauge the true political commitment to people living with HIV/AIDS and treatment access in the Dominican Republic, one could consider a particularly revealing comparison. Even in neighboring Haiti, a country currently without a functioning government and mired in incomparable poverty, WHO estimates that AIDS treatment programs have managed to provide ARV medicines to more than twice as many people as compared to the Dominican Republic. About 4000 people receive ARV treatment in Haiti while in the Dominican Republic the number is only 1500. Some here choose to argue that the quality of the care provided is more important than the number of people receiving treatment, but this is a foolish excuse and unacceptable choice. The truth is evident to anyone who cares to look: the quality of care for most people living with AIDS in the Dominican Republic is unacceptably low. Moreover, the reality is also that unless there is access to antiretroviral medicines and medicines to treat opportunistic infections, healthy Dominicans with HIV will eventually become sick and die of AIDS, leaving behind impoverished family and children. The AIDS epidemic, along with fear, stigma and discrimination will remain strong.
Currently about 90% of Dominicans living with AIDS needing antiretroviral medicines are unable to access ARV treatment at all. Paradoxically the problem is not the high cost of the medicines, as many assume. For years generic medicines have theoretically been available to the government for less than a dollar per person per day in the Dominican Republic. In addition to extremely limited access to ARV medicines, nearly all basic components of quality comprehensive HIV/AIDS care remain unavailable to most. Only a very small percentage of clinics and people living with AIDS have access to essential lifesaving medicines for opportunistic infections through the National AIDS Program. These medications are sometimes even more important than antiretroviral medicines to treat acute infections.
There is generally very poor access to CD4 lab tests, recommended by international guidelines for poor countries at least every five or six months to indicate when to start treatment and to monitor immune status. Even scarcer and costlier are viral load tests that can help to measure if the antiretroviral drugs are working properly and suppressing the replication of the HIV virus in one’s body’s cells. And for the relatively small number of people who have access to ARV treatment, but may develop resistance to the limited classes of antiretroviral medicines available in the country, it is nearly impossible to obtain a genotype/phenotype test for drug resistance and viral mutation in the Dominican Republic. All of these tests and much more expensive patented ARV medicines are considered cost effective and important enough to provide many PLWA in neighboring Puerto Rico. Yet in the Dominican Republic, where most poor people's lives are deemed to be cheap, even the most basic components recommended for treatment of HIV/AIDS in resource poor settings often remain unavailable.
Extreme Shortages in Access to CD4 Tests
One major problem is the lack of regular access to CD4 testing. The CD4 count is an essential tool in care for PLWHA in both poor and rich countries alike. Important price negotiations secured by the Clinton Foundation have reduced the cost of reagents for CD4 tests to less than $6 per test. However, for the past year, international agencies and the government have been paying a private lab about $100 dollars per test and are now paying the same lab a price of about $50 per test, which is still quite costly. Almost every single doctor treating AIDS patients in the entire country would confirm that the high costs of the tests have caused the government to greatly limited access to these tests for those who need them.
Currently, and during the past year, the laboratory at the Instituto Dermatalogico in Santo Domingo is the only lab that performs the CD4 tests for the government. Many share a degree of frustration that with regard to this institution and the CD4 tests, as the directors of the Instituto Dermatologico lab seems much more interested in petty financial gain, and crippling the National AIDS Program than providing a low cost and sustainable service in response to a true public health emergency. Some claim there are kickbacks for both government officials, doctors, and those at the private labs, a charge which may be unwarranted but should be seriously investigated. In any case, the government itself is as much to blame, for notorious delays in equipping its own lab. It has done little thus far to effectively resolve the tedious bureaucracy, long waiting lists, and the lack of regular CD4 testing in and of itself has become a critical bottleneck in most outpatient treatment sites.
Even with $5 Million: Severe ARV shortages continue
As this article is written, numerous sources confirm that nearly every clinic in the entire country that is part of the government HIV/AIDS treatment program is facing a shortage of ARV medicines, even despite the fact that so few people have access to treatment. There has been almost no treatment available for those who newly qualify for ARV medicines, and there have even been reports of efforts to ration the distribution to those already receiving medicines in order to take all possible measures to avoid interruptions in therapy which can cause drug resistance. This is a smart strategy from a medical and logistical perspective, but it sends a scary message to people living with AIDS about the sustainability of the program. If periodically there is only receives a week’s worth of nevirapine instead of the usual month or two months stock, many begin to worry how they will be able to receive treatment for life through such a poorly organized program. The situation instills an overall lack of faith in the competence, commitment and trustworthiness of clinic directors and National AIDS Program officials.
For Dominicans taking ARV medicines, supply chain management and procurement of medicines and lab diagnostics is not a theoretical concept or an annoying chore every few months but is often a matter of life and death. With the current ARV shortages, additional emergency measures were reportedly taken to ensure a stock of enough medicines for those 1400-1500 individuals already enrolled in the National Program. However, a representative from REDOVIH, a national association of people living with AIDS, recently estimated there are now more than 800 people with documented CD4 below 200 (meaning they already qualify for and need ARV treatment) that had been placed on a temporary “waiting list” for treatment.
At one private clinic in Santo Domingo that also receives ARV medicines from the government (a site that many point to as a model for the high quality of care provided) doctors report that 100 people with active files have CD4 counts less than 50 still need ARVs. Each of these individuals is dangerously close to death and likely afflicted or susceptible to a wide range of deadly opportunistic infections. However, nearly all remain on the waiting list because the government has not authorized new individuals to enter the treatment program there for over four months. Despite repeated requests, the government has not delivered more antiretroviral medicines to the clinic for these individuals. Unfortunately, similar problems are and have been occurring nationwide. Access to medicines and the quality of care in many rural areas, if there is any at all, is often considerably worse then in the capital. This is the sad reality of treatment scale up in the Dominican Republic. It reflects the progress in this Caribbean country and the remaining needs with respect to the WHO’s highly publicized 3x5 initiative, which called for governments to take extraordinary efforts for providing antiretroviral to three million people worldwide by the end of 2005.
Lack of ARV medicines only one part of current crisis
Another urgent procurement issue still remains. Aside from small previous purchases, and some unsustainable donations providing for an extremely limited amount of the overall need nationwide, there is still very poor access to a wide range of medicines needed for opportunistic infections, which attack people living with AIDS. Reportedly, the government (or more precisely COPRESIDA, the Global Fund's Principal Recipient) order for procuring a wide range of medicines for opportunistic infections has still yet to be formally placed and paid for, so it is unclear if or when a reliable supply of these medicines will be available to those who need them. In any case, the medicines are frequently not available in the comprehensive care centers. Doctors in the public sector insist that most Dominicans with AIDS that they see are unemployed or are so poor that they often cannot afford even the $2-$3 co-payments government pharmacies charge for some medicines, let alone the cost of more expensive drugs and lab tests which can cost $15 per pill or $170 for a viral load test.
Medicines and lab tests are certainly not the only things required to provide good care and save the lives of people living with AIDS, but they are an essential first step. There is also an urgent need for improved public health infrastructure, hospitals, clinics, trained staff and committed health professionals, treatment literacy and patient adherence counseling, good nutrition, outreach programs, prevention programs and access to condoms, medical records management, health surveillance systems, expanded access to regular HIV testing, good drug purchasing, forecasting and procurement practices, a transportation and distribution system that allows people to access the appropriate services in sites providing care, the need for safely warehousing medicines, and much more.
Solving these problems may appear to be an extremely difficult and daunting task. However, the experiences of many other governments in Latin America and the Caribbean reveal how much is possible when leaders and health administrators commit to provide care and save lives. Even looking past countries with very ambitious and successful National AIDS Treatment--and often prevention--Programs like Cuba, Costa Rica, Brazil, Barbados, and the Bahamas, it would not be exaggerating to suggest that relative to overall need and resources available, almost every other country in the entire Western Hemisphere has made more progress than the Dominican Republic in providing ARV treatment to people living with AIDS.
In comparison with many countries in Africa, Southeast Asia, or neighboring Haiti, the overall number and needs of people living with AIDS in the Dominican Republic are both still relatively small, while the national resources are greater, and health and physical infrastructure is generally much better developed. Just as importantly, there have also been strong and dynamic efforts from people living with AIDS, health care workers, and community based groups with scarce resources. They continue to speak up, advocate and work to improve access to treatment, in a difficult context and often with little remuneration or recognition. Of course the number of people engaged in these efforts is insufficient and such work must be encouraged and strengthened many times over. But more critically, there a resounding need for radical actions that rupture the wide gap that exists between discourse, priorities, and methods of indifferent elite both within and outside the HIV/AIDS bureaucracy, and the awful but preventable situation threatening the lives of tens of thousands of poor, HIV+ Dominicans. Many fail to recognize that the need for this change is as urgent now as ever.
*Agua Buena Human Rights Association
San Jose, Costa Rica