3000 Deaths Reported in 2005
Guatemala's National HIV/AIDS Program faces disinterest by higher authorities and immediate budget shortages: $3 Million Dollars Needed to Fill Gap for 2007
By Eugene Schiff*
During a recent visit by the Agua Buena Human Rights Association to Guatemala City (March 18-24 2007), officials working in the National HIV/AIDS Program indicated that the Government of Guatemala must invest an estimated additional $3 Million Dollars (USD) for 2007 in order to effectively administer the HIV/AIDS treatment program this year. These funds are critical for opening new treatment centers, funding basic operational and logistical costs, purchasing antiretroviral drugs and medicines for opportunistic infections, and to hire and train additional staff and health workers to provide care including medicines and lab tests for all of those currently receiving ARV medicines and also to the large number of individuals living with HIV/AIDS still needing but lacking treatment nationwide. An estimated 3,000 people died of AIDS in Guatemala in 2005, the last year for which information is available.
Experts on HIV/AIDS from various institutions - governmental, NGOs, international agencies, and networks of people living with AIDS stressed the need for increased government investment in public health care overall and a greater prioritization by the Central American nation's leaders to addressing the growing HIV/AIDS epidemic.
Guatemala holds the dubious distinction of investing one of the smallest percentages, just 0.9% of its GDP, in health care, which is among the least of nearly any country in Latin America. Substantial new investments are needed. In addition to more resources, the money must also be efficiently channeled into decentralizing HIV/AIDS prevention and treatment programs while also focusing on high risk populations and marginalized rural communities. These strategies are essential in order to address the urgent needs of those already affected and prevent the further spread of the HIV/AIDS epidemic into the general population.
Without mobilizing such new resources, and designing corresponding systems and projects including massive testing campaigns linked to meaningful counseling and follow up with access to medicines and associated medical care for those needing it, health authorities stressed that it will be impossible to reduce the still very high levels of stigma and associated mortality related to HIV/AIDS in Guatemala.
Advocacy Actions Yield Results
We should note that in contrast to just a few years ago, very important progress has been made and thousands of additional deaths from AIDS have been prevented as result of access to antiretroviral medicines. Access to ARVs in the public sector has increased rapidly from only about 100 people in 2003 to more than 5,000 people with medicines nationwide overall by the end of 2006 (according Guatemalan National AIDS Program). (An additional 2,000 people receive anti-retrovirals through Guatemala's semi-autonomous social security program, know as the "IGSS".) These achievements have been possible in part due to increased investments by government, but also primarily as result of the actions and coordination of diverse actors, committed physicians and health workers, civil society, activists, the efforts of people living with AIDS, and particularly from projects by three teams of the international humanitarian organization, Medicos Sin Fronteras (MSF) which first established and have managed and now coordinated the transfer of three separate AIDS treatment clinics and projects and those receiving medicines over to the care of government hospitals.
Also critical more recently over the past year and a half is work of World Vision, which was selected to managing the $40 Million Dollar HIV/AIDS Global Fund Project which also funds numerous sub recipients organizations, that had by February 2007 helped to improve and expand access to antiretroviral treatment in Guatemala to more than 2400 additional adults and children currently receiving medicines just through the Global Fund project.
However, current estimates from UNAIDS indicate that in recent years that there were 3,000 AIDS in 2005 and 5800 in 2003. Many of these deaths could have been prevented with access to antiretroviral drugs and appropriate care. Furthermore, some argue that the true number of AIDS death is actually far higher due to underreporting and the absence of access to diagnostic tests and ARV treatment for vast portions of the Guatemalan population, particularly the historically excluded yet also increasingly mobile rural and indigenous poor.
Access to or lack of medicines for HIV/AIDS must be seen in this context, and even a country profile for Guatemala on the World Vision website notes that according to data from the Ministry of Health 43% of all Guatemalans have no access to any kind health services, primarily those living in rural areas. An additional concern that needs to be recognized and much more closely addressed is that TB is the leading cause of death among Guatemalan PLWA, which implies a series of particularly serious social, pathological, and clinical challenges posed by this dual epidemic.
While shortages and cost of antitretroviral drugs has long been a key barrier limiting access to treatment in Central America and other poor countries, at this moment some claim that in Guatemala they key issue is no longer access to antiretroviral medicines, but access to HIV tests, and also the lack of doctors and nurses willing to care for people living with AIDS, and the lack of effective logistics systems needed to provide comprehensive care including medicines, lab tests, antiretroviral medicines, medicines for opportunistic infections, and even counseling to people living with HIV/AIDS. With the current National AIDS Program budget of 20 Million Quetzales (a little less than $3 Million Dollars) close to 80% of all resources will need to go directly to the purchase of antiretroviral drugs, while officials expressed concern that insufficient funds will be available for allocation to these other areas.
Budget problems imply choices and possible sacrifices in key areas
The Roosevelt Hospital and and the clinic run by the Asociacion Integral de Salud in San Juan de Dios Hospital are considered two of the leading public HIV/AIDS treatment centers in Guatemala. Both sites are striving to provide increasingly specialized HIV/AIDS care centralized in Guatemala City, while a smaller number of PLWA also receive care at sites at hospitals in rural areas in Coatepeque and Izabal, and access to treatment is scheduled to expand to other several sites and regions in upcoming years, where antireotriviral medicines are not currently available.
One of the issues constantly highlighted by key actors was the need for continually improving the quality of care provided in the two reference hospitals providing antiretroviral medicines in Guatemala City, and the need to offer more advanced and expensive lab procedures such as viral load, resistance testing, and alternative first, second line, and rescue therapies. Also, interestingly, Guatemala is one of the first countries in the region where health authorities have already decided to switch the first line treatment combination in the majority of new cases from cheaper more widely used drug cocktails including d4t (stavudine) and neverapine to newer costlier drugs such as tenofovir, emtribicine, and efavirenz (which are about three times more expensive but are often preferred by patients and physicians since they generally have fewer serious side effects and may require less pills per day per patient, thereby reducing obstacles to adherence).
This new policy will likely imply that treatment costs could at least double or triple as more people are receiving more expensive drugs each year to come for the next several years and indefinitely in the future. Some second line drugs remain even more expensive and are virtually unavailable. A potent protease inhibitor – Atazanavir (known as Reyetaz) which is produced by Bristol Meyers Squibb – reportedly costs $20,000 dollars per year and is therefore virtually unavailable in Guatemala, according to a procurement specialist at the National AIDS Program. Kaletra (a drug produced by Abbott Laboratories combining lopinavir and ritonavir) is another important medicine used as salvage therapy for those with drug resistance, but even after a series of price reductions the cost of Kaletra alone ($1,000 per year) remains close to five times the price of first line generic medicines, and the important heat stable formulation is still not available in Guatemala. There are also important concerns that intellectual property restrictions built into the Central American Free Trade Agreement (DR-CAFTA) may extend patents, prevent generic competition, and serve as a barrier to affordable access to newer AIDS drugs in the future.
10% Resistance Estimated in PLWA population
Another key issue as thousands of individuals have been taking ARV medicines for a number of years and an estimated 10% experience drug resistance is access to and the high cost genotype and phenotype resistance testing – which not currently available in the public health system except through small privately run clinical trials. Each resistance test can cost several hundred dollars if not more as the samples must be sent abroad and there is no local laboratory capacity in Guatemala City at this time. These are challenging issues, and different standards of care have simultaneously been advocated and put into practice throughout Guatemala, including models from MSF, IGSS (the Guatemalan Social Security Hospitals), ASI (Asociacion de Salud Integral), the Government, etc. There is an urgent need for better and clearer treatment guidelines and greater inclusion and treatment literacy promotion among PLWA thesmelves.
Yet in addition to improving treatment options and offering specialized care in Guatemala City, many also point out that it is just as critical and perhaps even more important that the Guatemalan government invest resources and quickly begin decentralizing access to antiretroviral medicines to save the lives of people living with AIDS in more hospitals and communities throughout the country. People living with HIV/AIDS and also millions of Guatemalans who have never even taken an HIV test need HIV testing sites and clinics with access to antiretroviral medicines closer to where they live, so that they can more easily travel to these sites and access these services.
This remains a critical challenge and difficult choice for decision makers in Guatemala. They are increasingly pressured to do both - to provide more sophisticated level of care with important but considerably more expensive lab tests and drugs in Guatemala City while also extending a minimal level of care and much more equitable access to lifesaving medicines and health care throughout the country for those who cannot afford to travel to the city and access the two major public hospitals providing ARV medicines. But many worry that the government also seems fully committed to neither. Without more substantial government prioritization of and recognition of HIV/AIDS, and the appropriate investments in human and financial resources, neither of these strategies will be effective or even possible.
Homophobic violence, religious intolerance, and marginalization of sexual minorities
During interviews in Guatemala, a number of individuals highlighted the need for more resources and more open discussion, free from religious prejudices, about groups most affected by and at the highest risk for HIV/AIDS. These include sexual minorities, men who have sex with men, gay men, transgender individuals and transvestites, migrant workers, the homeless, and sex workers and their clients. While much attention has been paid to the feminization of the AIDS epidemic in Guatemala, Central America, and worldwide, according to World Vision, just 0.3% of pregnant women tested for HIV in a 2006 pilot study funded by the Global Fund Project in Guatemala tested HIV positive, suggesting that the overall prevalence rate among the population studied and possibly nationally may fortunately be lower than previous estimates suggested. However, this also means that targeted prevention and treatment interventions are particularly important and the current data does suggests that the AIDS epidemic in Guatemala remains concentrated in vulnerable groups, particularly among men who have sex with men, which according to UNAIDS could make up as many as 1/3 of those living with HIV/AIDS in Guatemala.
Jorge Lopez, director of OASIS, one of the leading and oldest NGOs in Guatemala advocating for human rights and respect for the diversity of sexual orientations, which also provides services, an internet cafe, a drop in center and HIV testing and counseling to sexual minorities in a strategic location in downtown Guatemala City, pointed out the need for more resources dedicated to HIV/AIDS prevention and treatment programs for men who have sex with men. He explained some of the particular challenges facing individuals in this community, particularly poor homosexual and bisexual Guatemalans and migrants from other countries in Central America (El Salvador, Honduras and Nicaragua) further south who must pass through Guatemala (in order to reach Mexico and the United States). Many are placed in extremely vulnerable situations as they face rejection by society at large and sometimes their families as well, and are thus forced to hide their sexual orientation or else live or work in the streets in Guatemala City. Older Guatemalan men, many from a generation who are less likely to regularly use condoms, often establish sexual relationships with younger partners, sometimes in exchange for money, with gay, bisexual, transgender, and transvestite sex workers and young men. In these situations, it is not uncommon for HIV/AIDS to become an occupational risk for male, transgender and female sex workers in the context of extreme poverty where some clients regularly prefer and offer a few dollars more for unprotected sex. OASIS has tried to raise more awareness about these issues and organized a series of projects, workshops, and interventions, and claims to have reached out to more than 125 transgender sex workers.
MSF closures present risks for vulnerable groups
Due to homophobia and discrimination, even treatment access and hospital care can become a special challenge. Many transgender clients and workshop participants reportedly expressed concern that they would face further discrimination at public hospitals once the HIV/AIDS clinic run by the French section of MSF closed its doors this year and patients were transferred to government run clinics and hospitals, which potentially have more conservative and less tolerant administration and staff, who are allegedly less able to provide effective counseling and who reportedly have urged people living with AIDS to bring their partners along with them to the clinic, which for male sex workers is obviously not always relevant or possible.
Advocacy, projects, and activities such as those carried out by groups like OASIS are particularly important in light of religious intolerance, and intense homophobic violence in Guatemala. Such violence is growing and includes the unsolved murder cases of 17 male, transvestite and transgender sex workers in recent years in Guatemala City. Jorge Lopez of OASIS points out that a culture of impunity exists in Guatemala where Government leaders have consistently failed and refused to openly address basic human rights, social and medical needs of men who have sex with men. Gay activists argue that government leaders refuse to open their eyes to or address these problems, which in turn helps to fuel further violence, stigma, homophobia, and the spread of HIV/AIDS, and the deaths from AIDS and opportunistic infections of sexual minorities unable to access affordable and culturally sensitive treatment and care in Guatemala. Yet few upper level politicians or government leaders are willing to address these issues, as open discussion of human rights for Gays, Lesbians, Transgender, and Bisexual individuals is considered a taboo subject in Guatemala, particularly among the influential and elite political and religious sectors.
Some fear that within this context, Guatemalan NGOs or individuals strongly advocating for the rights of gays with projects and perspectives such as OASIS may not receive the funding or the political support needed to carry out effective prevention, education, research and treatment programs amongst high risk target populations and communities. Current estimates and a recent study indicates that while the HIV prevalence rate among the general population in Guatemala is between 0.3-0.8%, among men who have sex surveyed in Guatemala City in 2006, 18.3% are HIV-positive, up from 11.5% in 2001. The study also revealed that 36% of men surveyed by OASIS who identified themselves as having sex with other men reported having sex with women as well. This is just one more reason why authorities can ill afford to ignore the basic human rights and distinct needs of men who have sex with men in Guatemala.
The Global Fund HIV/AIDS Project in Guatemala: Progress and Challenges
In a visit and interview with two project managers from World Vision Guatemala, which is the Prinicipal Recipient for the Global Fund HIV/AIDS TB and Malaria Project in Guatemala and also a large International NGO affiliated with the Evangelical Church, World Vision staff impressively highlighted how the project is meeting most of the required indicators and conveyed that the grant is being managed with considerable transparency and greater efficiency than many had expected, particularly after several initial challenges and delays related to drug procurement and other issues. World Vision staff stressed that in management of the HIV/AIDS GFATM Project the institution was doing its best to meet the indicators outlined in the project, and provided a series of documents and reports tracking progress and programmed activities.
Most indicators set for the project were met or surpassed. In the 9th quarter grant report submitted in February 2007, more than 2.5 million condoms were distributed, there are 4 treatment centers providing ARV medicines instead of an expected 3, 2299 adults receiving ARV medicines purchased by the Global Fund Project, surpassing the goal of 1488, 28,561 opportunistic infections that have been treated, a whopping 656% higher than of the 4353 expected, in addition to dozens more indicators that have been surpassed as well. Overall the project progress was rated favorably, although critical areas where the project was unable to meet indicators set in the outset include treatment for children, where just 112 children are receiving antiretroviral treatment instead of an expected 330 anticipated for this time in the project proposal. Also, treatment for sexually transmitted infections (SITI) among people living with AIDS was only provided to 3014 out of an expected 5044, including just 737 self identified men who have sex with men out of a projected 1300. World Vision noted that in some cases where indicators were surpassed by several hundred percent these numbers are being revised upwards for more ambitious targets in the second phase of the grant while others that were not reached due to different factors in some cases are being revised downward, or given a greater priority.
Treatment access targets for 2009 for treatment funded by the Global Fund HIV/AIDS project, which is expected to terminate in 2009, also have been modified upward slightly from 4381 to 5197, a 16% increase, but still only enough to cover less than half of the 11,000 more people estimated to need treatment by 2009. The government of Guatemala will need to cover for the remaining 6000 PLWA over the next two years, which will require a substantial increase in resources and capacity to provide medicines, lab tests and quality care. This will be costly. Although it is difficult to make such calculations as the prices of medicines will hopefully be further reduced in the future, UNAIDS estimates that the budget for treatment will soar from $12 million dollars in 2010 by the end of the Global Fund Project to $102 million dollars required to treat 40,000 Guatemalans with AIDS by 2015.
The government is currently investing just $3 million dollars, is an increase from previous years but still $3 million dollars short according to well informed estimates of officials at the National AIDS Program.
PLWA Perspectives on ARV access
During a small discussion with a dozen people living with HIV/AIDS from Guatemala City, entirely different perspectives emerged. Most were unaffiliated and felt no need to advance any institution's agenda, and instead they spoke from their own experiences. They stressed many cannot access and have trouble adhering to treatment because there is a total lack of support for transportation, lodging, and essential diet and nutritional needs, home visits, and other community based projects for people living with AIDS with critical and sometimes insurmountable difficulties accessing government run health clinics in Guatemala City.
The charismatic and diverse group of individuals at the meeting stressed the importance of these services not merely for themselves, since most had managed to get themselves to hospitals and clinics and secure their own treatment although they clearly still had many needs and troubles of their own - about half were currently unemployed - but particularly for those many others, the tens of thousands of Guatemalans living in much deeper poverty and also living with HIV/AIDS in rural areas who must make tiring journeys on crowded buses and travel long distances to the capital from outside Guatemala City in order to seek care and get lifesaving drugs. It was inspiring but also ironic how most deeply wanted to help work to address these needs but often found few outlets to formally participate despite the plethora of new resources and project currently underway as result of the Global Fund and other donors, even though each had unique experiences and skills acquired as result of many years of living more openly than most with HIV/AIDS and fighting for medicines, against stigma, and for their lives.
It is not clear if Guatemalan leaders are paying much attention these people or their concerns and needs, but they should. These are powerful, reasonable, and very important demands that the Guatemalan government, or any humane government or authority in region must quickly begin to find innovative new ways to address if it hopes to effectively address the HIV/AIDS epidemic and try to save the lives of tens of thousands of Guatemalans living with HIV/AIDS needing access to medicines now and in the near future.
*Agua Buena Human Rights Associacion