Section: Trinidad & Tobago
Beyond crime, carnival, and cricket: A visitor’s perspective on achievements and critical challenges impeding ARV treatment access for people living with AIDS in Trinidad and Tobago
By Eugene Schiff*
After Jamaica, Trinidad and Tobago, with a population of approximately 1 million, make up the second largest English-speaking country in the Caribbean. Thanks to strategic mineral resources, including oil and natural gas, it is also one of the most prosperous islands in the region, although all inhabitants do not share this wealth to the same degree. Partially as result, there is a high level of population mobility, and some claim that more Trinidadians live outside of Trinidad than in Trinidad itself.
Just is a short distance from the coast of Venezuela and the South American continent, the fascinating mix of cultures, people, music, food, and styles in Trinidad is evident even from a brief visit. Afro-Caribbean identities and influences remain very strong. While some follow Rastafarian beliefs, and many listen to reggae and soca music, today one also sees and hears how hip-hop culture is continually being imported and adapted. Over the layers of British, French and Spanish colonialism there is also a large population with ancestry from the Indian subcontinent, a smaller community of Middle Eastern entrepreneurs and oil workers, Chinese, a scattering of migrants from Colombia, Guyana and the other Caribbean islands, relatives, expatriates and tourists from North America and the U.K., as well as a large wave of Venezuelans (some fleeing from poverty and others a newly perceived lack of opportunities due to the government’s leftist politics) that add to this tapestry.
The HIV/AIDS Epidemic and Treatment Access
Since the early 1980s, HIV/AIDS has spread throughout the region and the virus has woven itself into Trinidad’s diverse aforementioned social fabric. In the 2004 World Report, UNAIDS lists an overall adult (ages 15-49) HIV infection rate of 3.2% in Trinidad and Tobago, with about 28,000 adults and 1000 children living with HIV/AIDS, and half of these 29,000 being women. While in certain respects Trinidad is relatively well suited and has recently made important advances in providing free ARV treatment and protecting the human rights of people living with AIDS, major challenges remain. They urgently must be brought to light, addressed and overcome.
By mid-October 2004, according to estimates provided to UNAIDS by the Ministry of Health, 1248 people were receiving antiretroviral (ARV) treatment in Trinidad and Tobago. Data from February 2004 indicated that only 600 people were receiving ARV therapy at that time, which suggests that over 600 individuals were able to start on treatment in Trinidad in the past 8 months. However, the February estimates also indicated that approximately 3,465 people living with AIDS needed ARV therapy at that time, meaning that there are still substantially more people who need treatment and are not receiving it than those who have access to ARV medicines.
These numbers suggest that at least 2000 people living with AIDS urgently needed treatment in February 2004 and today, likely many more. In the past year, a significant number of these may have died. In 2003 alone, despite treatment being through the public health sector, UNAIDS estimates that 1900 people died of AIDS in Trinidad and Tobago. Such statistics strongly suggest that the magnitude of the AIDS epidemic is still overwhelming the government’s response and investments to provide people with treatment and appropriate care. Each year many more people continue to die of AIDS than the total, cumulative number that have been able to access treatment to date.
Access to AIDS medicines at Port of Spain’s renowned Medical Research Center
In Trinidad and Tobago there are three sites where people living with AIDS can access treatment for free, through the public health sector—one on the island of Tobago, another in San Fernando, and the third in the capitol, Port of Spain, which has the largest and oldest site, The Medical Research Centre (MRC). While in Port of Spain in mid-October, I was able to visit the MRC, and to meet and speak with its director, Dr. Courtney Bartholomew about the achievements and obstacles he sees regarding the provision of ARV therapy to people living with AIDS. At that time, about 800 PLWA were receiving treatment at the Center.
Imposing, but also curious, accessible, and knowledgeable, Dr. Bartholomew exuded pride as he called the MRC the “best [AIDS treatment] center in the Caribbean.” As if to reaffirm his own uncontested credentials, he pointed to a picture in his office showing himself with two French physicians, including Luc Montagnier, who is credited with helping to discover the AIDS virus. The picture shows the three researchers amidst a stunning field on a safari in Africa in the early 1980s. Compared to the lack of organizational leadership, efficiency, and concrete progress elsewhere in the Caribbean, like in the Dominican Republic (a country with a population eight times that of Trinidad with a similar rate of HIV/AIDS), where at half a dozen sites scattered across Santo Domingo there are barely enough medicines for five hundred individuals and huge waiting lists, red tape, problems for distributing and warehousing medicines, maintaining registries, and even lack of electricity is still the norm, I couldn’t help but come away impressed after visiting the MRC and speaking with Dr. Bartholomew.
Professor Bartholomew shared his views on everything from the tax-free salaries received by UN/PAHO staff, to the decision to introduce a small quantity of cheaper generic ARV medicines for a portion of the new patients at the Center to complement the patented pharmaceuticals that the government and health authorities have traditionally purchased and administered. He also showed me a a recent letter of acceptance he had received from Konji Sebati regarding Pfizer’s widely publicized Diflucan Donation Program. The company will finally (after years of price gouging and now that the patent has expired) provide free Diflucan to those who need it as result of opportunistic infections related to AIDS. Dr. Bartholomew expressed his real appreciation to Pfizer for this philanthropic initiative (while his staff did note the tremendous length of the application and the difficulties they previously faced purchasing and administering fluconazole), but he candidly estimated that this probably cost the largest pharmaceutical company in the world something like $20-30,000, a relatively small sacrifice for Pfizer, and an amount he himself and others could have even paid out of pocket. Still, we concurred that improving access to medicines for opportunistic infections for people living with AIDS in the region is very important, and concrete, genuine and substantial support that generic and originator companies can provide must be encouraged.
Dr. Bartholomew also expressed his resolve to fight against the lack of regular access to second line treatment due to unaffordable drug prices imposed upon Trinidad and other middle income countries. The U.S. and European based pharmaceutical companies that manufacture the drugs, including Abbott, Gilead, and Roche, determine the drug prices for newer AIDS drugs, for which there is still no competition from generic companies. Abbott’s important combination protease inhibitor drug Kaletra, for example, costs $500 dollars per month ($6000/year), which to put in perspective, is about ten times the cost of an expensive (and extremely profitable) monthly cell phone plan. Abbott reportedly responded to Trinidad’s call for lowered prices saying that since neighboring Barbados was paying the full price, Trinidad could afford to do the same.
Substantial additional region-wide price reductions and negotiations are urgently needed in order to improve treatment access, especially as relatively wealthier countries including Trinidad, Barbados, Grenada, and others do not directly qualify for resources from the Global Fund to Fight AIDS TB and Malaria due to their higher Human Development Index levels. Just as the Agua Buena Human Rights Association and local activists have documented and advocated in Honduras and elsewhere, it is essential that those who genuinely need second line treatment, like Kaletra, (which is probably a small but growing number) in Trinidad and elsewhere in the Caribbean, be able to get the medicine that they need. These individuals must no longer be sacrificed and left to die without appropriate treatment in order to indirectly protect the profits of Abbott’s shareholders, who quickly need to come to terms with the reality that hundreds if not thousands in the region have almost no access this important lifesaving therapy. Unless Abbott Pharmaceuticals and the Trinidadian government commit to making this drug and others available there is little hope for these individuals future survival. The issue is sustainability and many lives are at stake. Neither individuals nor the government can regularly afford to pay the current prices that the companies charges.
Catherine Williams, the Programme Coordinator of the Community Action Resource group (CARe) in Port of Spain and a longtime AIDS activist, explains that despite the struggles they have gone through and the progress that has been made, PLWHA who are poor and develop drug resistance are essentially still condemned to a particularly difficult situation and often torturous death, as resistance testing and access to rescue and costlier alternative ARV therapies remain minimal in Trinidad. PLWHA who have family abroad and can somehow obtain numerous visas and afford to travel and seek care in the United States remain a lucky minority. Even those who go through these channels stress that the process is tiring, time consuming, and often, dangerously, does not allow for the most appropriate care, medical and psychological follow up, or timely, regular access to medicines required for good adherence to treatment.
Access to needed medicines and diagnostic services must improve in Trinidad, especially for those who were able to start ARV therapy (and thus may now need different treatment regimens than the limited package currently available nationally) before April 2002, when the government committed to provide free medicines for people living with AIDS through the public health sector. As the HIV virus mutates, developing drug resistance comes as a natural biological occurrence for a significant portion those taking ARV medicines. Appropriate options for clinical monitoring and treatment, which are standard in most first world settings, are still lacking, and must become affordable and be incorporated as is deemed necessary into public sector National AIDS Program in Trinidad.
PLWHA cite numerous barriers to care and treatment that fatally remain in place--yet remain convinced that these can and must be overcome
Many more issues, concerns, and a more complete historical perspective come forward after conversing with people living with AIDS, those who depend on and better understand the faults of the public health sector program for providing treatment and care. For example, Ms. Williams recalled how difficult it initially had been trying to smuggle any medicines (not just 2nd line treatment) and/or people to and from the United States in order to get those who were the very sickest on medicines first, in hopes that then the government would be able to provide them with treatment thereafter. This arduous system was filled with struggle and grief for those who died needlessly, yet it was all that could be done until April 2002 when the MRC, through the Ministry of Health, recently began to provide ARV treatment on a more regular basis.
Even today, some point out, seeking care can be a challenge. The hours of operation for the public sites are reportedly set strictly at 8-2pm from Monday through Thursday. This sometimes make it impossible for those who are working and/or in some cases must travel several hours to visit a clinic, to pick up their medicines, wait several hours to see a doctor, or obtain the result of a test. Anyone who becomes sick after 2pm or from Friday to Sunday is essentially out of luck, and must wait until Monday for basic care, as other facilities are not generally well equipped to deal with people living with AIDS. In order to meet the needs of its users, treatment sites must adapt and provide extended hours, even if only for one day a week, and/or designate a period of time on the weekends for those with difficulty traveling one of the three clinics during the week. Financial support for transportation and incurred costs for those coming from larger distances is also needed to encourage more to seek care. With genuine support from the government health authorities, such measures could go a long way get more people access to medicines and improve the quality of care for those already enrolled.
Members of CARe explained how apart from the three designated treatment sites, other health facilities that may be more easily accessed, are reluctant and ill equipped to care for people living with HIV/AIDS, and discrimination against those who are HIV+ is still common. They report how in regular hospitals and clinics, tests like those for Pneumonia or Meningitis (common opportunistic infections affecting people living with AIDS) take a very long time, and people have died before the results are obtained, and/or before it was possible to start ARV therapy and be treated appropriately for the AIDS related infection. They note how it is impossible to obtain free ARV medicines from a private or local doctor or clinic, even though this would be more trustworthy and convenient for some people living with AIDS. Currently, in the 5 or 6 major public hospitals in the country, as well as the smaller satellite clinics, there are reportedly no effective HIV/AIDS programs, and the provision of HIV tests is rare unless one is already sick.
Even in the 3 separate existing sites dedicated to HIV/AIDS care, PLWHA express that there is need for quicker CD4 testing, improved nutritional support and counseling, and that there was still no Viral Load or drug-resistance testing available as of October 2004 (supposedly the government has just purchased a machine to perform viral load counts). Lab testing, such as viral load, previously has been performed at the CAREC (Caribbean Region Epidemiology Center) lab. However, many claimed that this proved extremely expensive and ultimately not sustainable, despite the fact that the CAREC lab and headquarters is in Port of Spain, Trinidad (these tests are even more costly for other countries in the region that don’t have their own lab equipment and need to send the samples to Trinidad for analysis). Some argue that the CAREC lab is charging prices for its AIDS related diagnostic tests as if it were a private business. This is unfortunate, considering the overwhelming needs of the smaller island countries, CAREC’s purported commitment and leadership role in the Caribbean region to combat the HIV/AIDS epidemic, it’s general leadership in coordinating regional laboratory and epidemiological surveillance, and the fact that the lab is a part of CAREC so as such it receives funds from PAHO/WHO/CDC.
Is there confidentiality of care in Trinidad and Tobago?
Another issue worth highlighting is that despite the fact medicines are now available in Tobago, about 100 people living with AIDS in Tobago still travel all the way to and from Port of Spain by plane or ferry (both options are costly in terms of time or money) in order to receive treatment at the Medical Research Center. Those who do receive ARV medicines at the clinic in Tobago say that more trained medical personnel are needed (apparently there is only one physician and one nurse, and the doctor is not always available), that medicines are sometimes not available when they need them, and confidentiality of those who visit the clinic and their medical records remain a major issue for people living with AIDS on the small island, which is why many still choose to get treatment under more anonymity in Port of Spain.
Information which appeared in a recent newspaper article about HIV/AIDS in the Trinidad Guardian on September 29, 2004 entitled “Women Becoming Infected: A Death Trap,” focusing on the area of East Trinidad, reflects some of the extremely valid concerns that people living with AIDS have with regard to the trustworthy and confidential nature of their medical records in the public health sector, even on the larger island. The article provides a half page chart with the addresses, town, patient id number, and diagnosis of 25 individuals (whose names were omitted), and notes if they are alive or dead. For one of the largest newspapers in the country to list the exact street, address, and town of HIV+ individuals, 11 of whom are listed as still being alive, and the rest whom have died of AIDS (yet may have family members who remain at the addresses listed), is a major violation of public and private trust.
Instances like these send the message to people living with AIDS that their medical records may not be secure in the public sector, and that health authorities are not to be trusted with this sensitive information. This ultimately discourages people living with AIDS who need treatment from visiting a hospital or site where treatment and care is provided. While I noticed that some new precautions were being taken at the MRC for example, in the several weeks following the article, AIDS activists who were concerned about the article noted that there had still been no official apology made by the newspaper’s editors, or the public health officials, or the medical records department at the hospital which released the data. This is a major violation of all international ethical and human rights standards, including those set by UNAIDS. Public health officials must provide strong guarantees that this type of scandal cannot and will not occur again.
Lastly, people living with HIV/AIDS, even those were educated professionals, stressed that simply figuring out that they were sick and HIV+ was a difficult and expensive process, and that without outside help, many could barely afford costs or energy associated with obtaining follow up care (missed work, mental health services, transport, new diet, vitamins, special testing, etc.) The tireless advocacy of groups like CARe that provide support and work to improve treatment access and the quality of life care for people living with AIDS, primarily those who are poor and remain underserved through the public sector, is of vital importance must be supported.
Such work and concerns must receive increased support and attention, rather than criticism or scorn from government, donor agencies, public hospitals, doctors, local and international organizations, and others. Only when it begins to address and meet the numerous needs that remain, including those discussed above, can the efforts of Trinidad and Tobago’s government and health authorities better confront the AIDS epidemic and really be considered a model for the entire region. Trinidad’s response would then be a source of inspiration and pride both for those who work in service of people living with AIDS, and people able to continue living with AIDS and prevent further infections as result of the care and support the receive.
Agua Buena Human Rights Association
San Jose, Costa Rica
Eng UNAID UC III