Published: December 14th, 2004.
7,500 Jamaicans Lack Access to Anti-Retroviral Therapy; most will die long before the universal ARV access target is reached in 2009
By Eugene Schiff**
As Jamaica hosts the biannual UNAIDS programming board meeting, the vast majority of Jamaicans living with AIDS still lack ARV treatment, face discrimination, and are asked to provide substantial monthly co-payments to access essential medicines and health care.
Instead of ensuring that ARV medicines become a basic human right for PLWA, and despite Global Fund resources which should help finance universal access to ARV medicines in Jamaica, the Jamaican government and health system continues to place onerous and unnecessary burdens on people living with AIDS, while claiming to promote solidarity and investment in the lives of this same group in numerous speeches and public pronouncements.
According to Dr. Yitades Gebre, senior medical officer with National HIV/STI Control and Prevention Program of Ministry of Health, June 2004 to June 2005 represents “year one” of antiretroviral treatment access in Jamaica. The Jamaican government was one of the last in the region to incorporate ARV medicines into its National HIV/AIDS Program. Even so, health authorities have made an important start, and do deserve to be recognized for these efforts.
Treatment Access and The Global Fund in Jamaica
The Ministry of Health in Jamaica is the Principal Recipient of the Global Fund HIV/AIDS Grant. It will receive $7.5 Million USD from the Fund in the first two years. Although it was not possible to confirm this information with anyone at the Health Ministry, published press releases and reports from the Global Fund website indicate that at least $2.2 Million USD has been released to the government thus far, of which $1.15 million has been disbursed to an additional eight sub recipients.
Several NGOs in Jamaica, including successful applicants, have indicated that the process of receiving and reporting on use of funds related to the Global Fund is needlessly frustrating and time consuming even to obtain a small amount of money. Even though the Global Fund grant is theoretically supposed to make the process of receiving funds much easier and specifically improve ARV treatment access in Jamaica, it seems to have done almost the opposite, while some of the strongest advocates for treatment access remain marginalized or given only token participation.
For example, the Jamaica Network of Seropositives (JN+), the major activist PLWA group that has focused primarily on treatment access issues in Jamaica, has been unable to access any sustained funding, remains without any paid staff members, lacks basic infrastructure like adequate office space and equipment, and many of its members feel betrayed by MOH authorities and the whole global fund process. For a group that has advocated and must now more than ever better advocate and empower poor people living with AIDS to demand their own treatment rights, this is unfortunate and seemingly an intentional undermining of their organization. Significantly though, JN+ members are not afraid to speak up against the government and demand better care. On the contrary, when I asked Ruth Jenke, President of the National AIDS Committee, which has received $330,000 USD (the largest allocation of any the 8 NGOs and sub recipients) about ARV access in Jamaica, she deferred my questions regarding treatment access issues back to the Ministry of Health.
In May 2004, a swarm of press releases and photo-ops announced that the Honourable Jon Junor, Jamaica’s Minister of Health traveled to Geneva to sign the “first Global Fund grant accessing Clinton Foundation low-price drugs” and diagnostics, which according to the press release reduced costs to a third to half what had previously been the lowest prices internationally available. These glowing statements obscured the reality that the whole Global Fund process in Jamaica took an entire year before it was even signed and a penny was released. According to Dr. Kevin Harvey, who is responsible for the ARV treatment component of the National AIDS Program from the MOH, the Global Fund grant does not allocate resources for hiring new trained staff to meet new treatment scale up needs. When faced with numerous demands during a forum from hospital staff and administrators, he repeatedly claimed that he and the ministry itself are doing the best they can but are strapped for such funds as well. Jamaica’s Global Fund timeline and strategy indicates that the Global Fund will not provide sufficient resources for total procurement and drug purchases needed for universal ARV access until late 2008 or 2009. In fact, the Global Fund has likely significantly delayed scaling up ARV access in Jamaica by distracting and reducing pressure from local activists and PLWA that have long demanded the Jamaican government assume its responsibility to provide ARV access to those dying of AIDS.
Furthermore, despite celebrated prices that the government was able to obtain through the Clinton Foundation for the drugs and diagnostics, the cost savings have not in turn been passed along to those who need them most, people living with AIDS. Health workers report that after they had provided free ARVs and other diagnostics for a brief period of just two to three months starting in August 2004, by mid-October they were informed by the Health Ministry that these services would no longer be free, but charged for. The annual cost to PLWA for ARVs is $200 US/year ($12,000 Jamaican dollars), which is paid monthly along with additional fees for diagnostics as described below.
ARV Access on the Ground: Successes and Challenges
Despite encountering difficulties in obtaining interviews and information from the MOH HIV/AIDS Program officials, last week I was able to visit three sites in Kingston. These were the Kingston Public Hospital, The Comprehensive Clinic, and the University of the West Indies (UWI) CHARES (Center for HIV/AIDS Research) affiliated with the UWI Hospital. In all three centers, ARV medicines were available in pharmacies and are being distributed to those who need them.
Improved access to treatment in Jamaica was also evident as several dozen PLWA at the treatment centers, and others affiliated with support groups including JN+ and the Jamaica AIDS Support confirmed that they are now receiving drugs subsidized by the Global Fund. Many of them had previously been purchasing the medicines and feel encouraged that the prices have become much more affordable
Prior to August 2004, people living with AIDS in Jamaica could generally access ARV drugs only if they could afford to privately purchase medicines at a cost of $85-$300 USD per month. Even for the cheapest first line ARV cocktails from LASCO (a company whose slogan is “making life affordable” which repackages and distributes Indian generic medicines made by CIPLA), the company charged over $1000 USD per year, an enormous amount for poor Jamaicans.
Partly as result of the late start in the public health sector and previous high prices, the health system and PWLHA support groups are facing some difficult challenges. In the previous two weeks, I interviewed at least four people who had started on medicines but had to discontinue ARV therapy prior to August 2004 because they were unable to afford the medicines. These four had been off ARV therapy 2-11 months. None of them were currently receiving medicines and it is urgent that they start back on appropriate treatment, yet the virus may now be drug resistant and much more difficult and costly to treat. The Ministry of Health claims that it can and will provide second line ARV therapy when these drugs are needed.
MOH explains that ARV access will be slow in coming
In a workshop related to treatment adherence organized by the Ministry of Health National HIV/AIDS/STI Programme December 6-7, 2004, Dr. Kevin Harvey conveyed that there are 430 people currently recieving ARV medicines in Jamaica, out an estimated 8000 total who need ARVs today (MOH estimate).
The most important challenge for the government will be scaling up its response. An estimated 7500 people currently need ARV therapy in Jamaica, according to the MOH. The program's “year one” target is to have 1000 people on treatment by June 2005. This plan leaves at least 7000 Jamaicans living with AIDS out of luck. They will face rapid disease progression, AIDS related infections, and likely die within the next one or two years.
Some knowledgeable sources express doubts that the government will even be able to reach this target by next June due to the strong stigma and homophobia that surround HIV/AIDS in Jamaican society and even the public health sector (which fosters additional reluctance for many to seek care). Irrespective of whether the target will be reached, budgeting and preparing to treat 1000 people living with AIDS is hardly the ambitious type of intervention that corresponds to the state of the HIV/AIDS epidemic in Jamaica and the urgent needs of those affected. There must be much more political will, international and local pressure, and a stronger commitment to identify and address the needs of people living with AIDS without treatment in Jamaica.
Furthermore, the Jamaican government has recently decided that since resources from the Global Fund are limited and not sustainable, it must charge recovery fees to PLWA who access care in the public sector. This creates an additional barrier to treatment and other complications in terms of collecting money, the administration of recovered funds, and it also generates mistrust and animosity among people living with AIDS and within the public health sector from the irregular granting of special fee waivers to some and not others.
While health workers and others stress that theoretically nobody is denied care or treatment based on inability to pay, PLWA are asked and expected to pay $17 USD per month for their ARV medicines, another $17 USD to perform a CD4 tests, $5 USD for each doctors visit, in addition to costs associated with other tests, medicines for opportunistic infections are often not available in the hospitals and frequently even more costly than the ARVs, as well as vitamins, improved nutrition, and transport to and from the clinic (which can range from $1 - $50 USD, the latter amount reported to me a few days ago by one physically disabled PLWA who needed to charter a taxi several hours to Kingston, since she cannot walk). There is also food and drink to pay for while traveling, a day of missed work (if employed), time away from their children, and the minutes of cell phone use many spend as they wait to be seen by the doctor, nurse, social worker, or pharmacist.
These recurring costs and other expenses can amount to a small fortune to people living with AIDS, many of whom are unemployed, underemployed, and/or relatively poor. Partners who are both HIV+, and parents of HIV+ children are expected to pay double, or triple these costs. Those who cannot afford the medicines must agree to pay what they can and promise to find work and pay more in the future.
Unlike many other countries in the region (including Brazil, Cuba, Costa Rica, Bermuda, Guadeloupe, Barbados, Belize, Honduras, Guatemala, the Bahamas, Puerto Rico, Haiti, Trinidad and Tobago, and the Dominican Republic, to name a few both poorer and wealthier than Jamaica) which have programs that provide free ARV medicines in order to best address the needs of PLWHA, the fees charged for ARVs and other services in Jamaica indicate a continuation of the half hearted and insufficient response of Jamaica’s public health authorities regarding the provision of ARV medicines and establishing measures to provide adequate health care to people living with AIDS.
As the government officials, top UNAIDS leadership, and representatives from other donors and AIDS service organizations across the world meet in Kingston and Montego Bay, it is essential that the pressing needs of people living with AIDS in Jamaica not be forgotten and overshadowed yet again. These issues must be made visible to and discussed by the decision makers, so that they can intervene, address them, and immediately improve the situation here in Jamaica. Too many Jamaicans have already died, and we cannot afford to wait any longer, as we are facing thousands of preventable AIDS related deaths in the future.
Excuses, Excuses, Excuses – Don’t Give up the Fight
Jamaican health authorities, and ironically especially those working in the National HIV/AIDS/STI Program, typically respond to such criticisms and concerns by activists and PLWA by stating that people affected by other diseases like diabetes and cancer don’t receive the same attention or priority, and imply that those with HIV/AIDS don’t really deserve special treatment. Yet to most people if not to them, it should be clear that the devastating spread of the AIDS epidemic in the Caribbean and elsewhere has rightly made it a priority in public policy. It is also only logical that the availability of additional resources through international funds/grants for confronting, preventing and treating the HIV/AIDS epidemic in Jamaica should allow for further strengthening the public health infrastructure as a whole.
Some government administrators, health workers, and even PLWA conveyed their beliefs that those needing medicines would value something much more if they contribute to pay for it, so that the co-payments will even help adherence. One hears such opinions expressed even as these same administrators eat free catered lunches, receive daily stipends, travel costs, and hotel stays paid for through the same funds related to HIV/AIDS, the ARV access program, and the overall program budget. I can only imagine how much more sincere they would come across and they would enjoy such benefits if they paid for these themselves.
Jamaican MOH authorities have also recently suggested in private conversation and in the press that “human rights organizations” come to Jamaica and produce biased reports, fail to appreciate Jamaica’s cultural and economic context, and counterproductively and insensitively accuse Jamaica’s government of negligence. However, in the case of ARV access as a human right for people living with AIDS, the numbers reported by the health ministry indicate that 7500 of 8000 of those who need ARVs currently lack treatment, and they speak for themselves. The real insensitivity and injustice is that shown to people with AIDS, for whom every effort must be made to offer lifesaving drugs and appropriate care.
Regarding the relevance of international human rights advocacy and Jamaica’s special cultural and historical context, Marcus Garvey, one of Jamaica’s national heroes, may have said it best when he once wrote [referring to stigma and discrimination associated with racism and empowering Africans and the African Diaspora]: “I know no national boundaries…the whole world is my province.”
Even more potently, Bob Marley advocated the need for activism, empowerment and action to achieve social change through his music, which lives on today. In the current Jamaican context his words would resonate with demands for free ARV medicines for all of those who need them:
I know you don't know what life is really worth
Is not all that glitters in gold and
Half the story has never been told
So now you see the light, ay
Stand up for your right.
Get Up, Stand Up, stand up for your right
Get Up, Stand Up, don't give up the fight…
…. But if you know what life is worth
You would look for yours on earth
And now you see the light
You stand up for your right, yeah!
Get Up, Stand Up. Life is your right
So we can't give up the fight
Many Jamaicans living with HIV/AIDS know that they must continue fighting for their lives and rights, and their contribution could be all the more valuable if the government, health authorities, international agencies and donors, and NGOs play their part in genuinely supporting this important struggle and themselves push in new ways towards making universal treatment access a reality in Jamaica very soon.
This will require greater transparency and sharing of information between the government and PLWHA and other activists from civil society. Resources must be obtained, better prioritized and allocated such that more medicines are purchased, staff is trained and hired, and appropriate lab tests are available and free (the CD4 machine in Jamaica has apparently been broken for the past three weeks). At the very least, user fees in the public health sector related to ARVs and other AIDS related services must be eliminated.
Based on past results, today’s efforts, and current attitudes, it is not clear that the present leadership from Jamaica’s Ministry of Health and National HIV/AIDS/STI Program show sufficient commitment to listen to constructive criticism and is genuinely willing to work to enforce these changes. There must be much more, not less, local and international attention, pressure, and debate about these issues. The high level UNAIDS meetings scheduled this week in Montego Bay are one place that this should and could be occurring, even if the plight of poor Jamaican’s living with AIDS without ARV treatment has not initially been placed prominently on the agenda.
Agua Buena Human Rights Association
San Jose, Costa Rica