Published: March 30, 2005
Nicaragua Case Study: Thousands in Nicaragua Lack ARV Access while Global Fund project treats 100 per year
By Richard Stern*
(Research Assistent: Laura Porras**)
In Nicaragua during a one week visit from February 6-10 of this year, it was not difficult to discover that hundreds, perhaps thousands of People Living with HIV/AIDS are falling through the cracks and dying without treatment. Meanwhile the only source of funding for ARV's, the Global Fund Principal Recipient, NICASALUD sticks to its "indicators" and is putting approximately 100 people a year on treatment.
Currently there are 154 adults and 14 children who receive treatment in Nicaragua. 154 are being treated by Dr. Carlos Quant and his Assistant at the Roberto Calderon Hospital in the capital city of Managua, home to about 25% of Nicaragua's five million people, with funds provided by NICASALUD. The Global Fund project began almost two years ago, so actually just 84 adults an children per year have received ARVs. ((Another undetermined number of people (probably around 50) also receive treatment in the isolated Caribbean coastal city of Bluefields, but this treatment is paid for by British Agencies of Cooperation. Bluefields is not accessible by highway, only by air or by boat. The British Agencies limit their ARV access support to the Caribbean region, one of the poorest in Nicaragua.))
Ten Times More AIDS Deaths per year than PLWA with Treatment is not Universal Access
But, according to various physicians interviewed who treat PLWA, including two in the public sector (and one in the private sector who donates his time) the number of unregistered and unreported cases in Nicaragua is probably about ten times the number of people who are actually diagnosed and receive treatment. This means that if there are 168 people on Treatment now, that there may be approximately 1,700 who need ARV medicines, but receive no services at all. In November of 2004, UNAIDS estimated that 1,000 people needed treatment in Nicaragua, and this number would have increased substantially in the past 15 months.
There is no accurate record of the number of AIDS related deaths per year, but physicians agree that over 1,000 per year would not be unlikely, although most of these deaths are either not recorded specifically as deaths caused by AIDS, and even when they are, the information is not collected by any Central Registry system that is able to function properly. Yet some people, including some staff from the Global fund project will state that ARV access in Nicaragua is "universal, " a very unlikely scenario if there are nearly ten times as many deaths per year as people on treatment.
What is even more disquieting is that the issues of "universal access" and a 'successful' Global Fund project are frequently part of the speeches that Health Ministers make at International Conferences, but are based on faulty statistics, erroneous conclusions, and give a totally misleading portrayal of the actual situation in Nicaragua. It is also worrisome that UNGASS II is on the horizon and it is not at all clear what the Nicaraguan government has achieved since 2001 and will be able to report to the United Nations next August.
(We cannot say that the Global Fund project is not "successful." The first round evaluation was recently approved by the Secretariat, allowing the project to proceed into its third year. However, we can report what we think is in the best interests of Nicaraguan PLWA.)
HIV/TB Co-Infection without HIV Testing
Several interesting observations substantiated our hypothesis of large numbers of PLWA who fall through the cracks. For example NICASALUD, which also receives $600,000 per year for its TB project from the Global Fund, acknowledged that it is involved in the treatment of 1,300 people for TB in seven sites around the country. NICASALUD also reported having access to a "sentinel" study that found that, in a small sample, 3.7% of all those with TB were also HIV+. Yet only those in the study received HIV testing. There are 2,200 people with TB in Nicaragua, including sites not covered by NICASALUD, so it would be reasonable to estimate that about 100 of these are also HIV positive, yet, except for those few who participated in the sentinal study, they have not even been tested. After our conversation, NICASALUD indicated that it now has plans to begin testing all TB patients this year, but acknowledged that this is not occurring as of February of 2006. In the mean time an estimated 100 HIV+ people (3.7% of 2200) are being treated for TB, without any awareness that their immune systems are deteriorating and that they also need anti-retroviral therapy.
We received another "indirect" indication of PLWA who fall through the cracks from a Red Cross staff member who indicated to us that she knows of 28 HIV+ people in the Northern city of Matagalpa. None of these 28 have had access to CD4 testing, much less ARV's. Yet when a person goes for an HIV test in Nicaragua, it is almost certainly a decision made on the basis of deteriorating health, after which a physician finally recommends testing. But in Matagalpa no one is following through to make sure that these 28 people receive CD4 testing and adequate medical follow-up. Of course there could be many more than 28 who have tested positive, or who need to be tested because they have early stage symptoms of AIDS. These were only the cases that this Red Cross staff member was personally aware of. There is no indication that NICASALUD is doing any out-reach in Matagalpa, or many other rural and provincial cities throughout Nicaragua, to attempt to assist people who test positive in obtaining services they need.
Finally, our own visit to the Roberto Calderon hospital in Managua was perhaps the most telling indication of the number of PLWA who die before ever receiving HIV related services. The day we were there we were able to interview five people. But three of these five were hospitalized in very serious condition (two with advanced case of Cryptococcus Meningitis and one with Toxoplasmosis).
All were now recovering. However, each story was similar . When symptoms such as diarrhea and night sweats began, each had gone to a health clinic in their neighborhood. Each one was "treated" with medications for their symptoms and sent home with no further follow-up. Obviously they did not get better, but since the attending physician had not made further recommendations, they recovered only until their symptoms worsened again, full blown AIDS began. Two of the three arrived at the hospital unconscious in ambulances. None of the three had received follow-up care after their initial clinic visit, nor had they received a recommendation to be tested for HIV. Yet these were, we presume the lucky ones, who arrived at the hospital before they died.
None of the hospitalized PLWA had any knowledge of local NGO's, which exist mainly in Managua. But if diagnoses are notbeing made by the "first health care contact," then of course a person living with AIDS will not even be aware of the existence of the NGO's. But it is also probable that even in the case of Matagalpa, mentioned above, that none of the people who have tested positive has access to an NGO where they will meet other PLWA, especially those who are already on ARV treatment. A local PLWA NGO tries to visit hospitalized People with AIDS, and looks for additional sources of medications for Opportunistic Infections when it is necessary. But the day we were at the Hospital, the person from the NGO, trying to accomplish this task did not even have bus fare to return home. We gave it to her.
Falling through the cracks at the initial entry point into the system
How many people from poor neighborhoods in Managua and all around the country are first seen at a neighborhood clinic where physicians have no training in diagnosis of early stage AIDS, and there is no HIV testing available? How many of them arrive at the clinic already extremely ill with an OI and still are not properly diagnosed? How many from rural areas have their first contact with a physician when they are already too sick to travel and have no money to travel? They have no options. There are no medications for opportunistic infections outside of Managua. A physician might prescribe OI meds, but families would have to pay for it on their own, buying them at pharmacies where prices are very high, especially considering that most Nicaraguans live on the verge of poverty.
The above issue seems to be the most critical issue and it is one that we denounced over a year ago, with respect to the Global Fund project in terms of the lack of outreach and capacity building in rural areas to provide referral sources early as well as treatment directly in rural clinics. Yet there is no indication that project implementation related to this issue is contemplated by the PR, and if it is not a required "indicator" for the GFATM project, then it is unlikely to be addressed by the CCM, PR or Portfolio Manager.
Why has the Global Fund project completed its two year evaluation of the TB component, yet HIV testing for TB patients was not even provided during the first two years, when the Fund disbursed more than $1 million for the TB component alone. And since the numbers of people (1,300 attended by NICASALUD) are relatively low, HIV testing should have been available from the beginning of the project, and should now be made available as quickly as possible.
Since the Global Fund is the only source able to purchase ARV's in Nicaragua, (except for the ARV's in Bluefields, mentioned above) and since they are meeting their "indicators," they seem to have little expressed motivation to reach out and place more people on treatment. Another issue we are curious about is the cost of medications currently being purchased by NICASALUD, but they did not provide any specific figures. But we would assume that the original Global Fund project called for a budget for treatment for 100 people at an estimated cost of $1,200 per person for 100 people for year, plus testing. These estimates were based on best available prices offered by the R & D companies in Central America in early 2003 when the project was written. However, costs at this moment are below $400 per person per year, because pre-qualified generic medications are now being purchased by the Principal Recipient. Thus, basic math would indicate that there should be money left over for each year, based on original cost estimates. In fact the cost of providing ARV's for 100 people a year at $400 per person is just $40,000 per year, yet indications are that the yearly budget for ARV therapy is around $250,000.
Why not use the extra money to treat four times more people, save many more lives, and actually try to go above the indicators? What does the Global Fund do in a case like this, where prices drop during the course of the project and there would presumably be an excess of funds available?
Another problem at present Kaletra and Tenofovir are not provided in Nicaragua, even if at this moment, only a very small number of people currently in treatment who are beginning to need salvage therapy. The cost of these two medications is indeed disproportionately high, but they should be made available.
(During our dinner meeting on February 7th we suggested to NICASALUD staff, including its Director, Dr. Josefina Bonilla, that NICASALUD could ask for permission from the Global Fund to change the "indicator" related to ARVs in order to treat more people, and that they should also direct their efforts toward out-reach to rural areas and impoverished barrios, to provide HIV tests and CD4 services for the hundreds, or thousands who need treatment now, and then follow through by providing this treatment. (Actually according to the official figures provided by the fund, the final number of PLWA "expected" to be on treatment at the conclusion of the entire five year project is 390, and NICASALUD is apparently content with this number, although we would welcome information to the contrary)).
CD4 Machines gathering Dust in the Health Ministry
Astoundingly neither of the two CD4 machines available in the Health Ministry is functioning. According to NICASALUD, although they had a $33,000 budget for purchasing one of these two CD4 machines, they don't have a line budget item for the $500 need to purchase a replacement part in order to repair the machine. So the machine is sitting unused in a Laboratory in central Managua.
CD4 testing is now available, using the less expensive Dynabeads technique at the non-governmental Organization Xochiquetzal in Managua, but Xochiquetzal is not a public health clinic. Xochiquetzal has a ten year track record of supporting treatment access and the human rights of People Living with HIV/AIDS and took the progressive step of finally trying to at least partially resolve the issue of CD4 testing, after the Global Fund project and Health Ministry both failed to do so. ( Xochiquetzal, directed by Hazel Fonseca, is now undertaking the task of trying to collect funds (or donated medications) to provide treatment for those who have opportunistic infections. For some reason, the $10 million AIDS component of the GFATM project doesn't include funds for these medications, in there is no indication that NICASALUD will ask for a change in the project, even though this is a critical need.
I spoke to two CCM members from UN Agencies, Dr. Reynaldo Aguiler from PAHO, and Dr Pedro Villanueva from UNFPA, (United Nations Population Fund) but neither one could explain why the CD4 machines were not functioning. Dr. Aguiler assured me that the cost for repairs must be more than the $500 indicated by NICASALUD , but could not explain why a brand new machine, presumably guaranteed by its manufacturer, has never functioned after more than six months of sitting in the Health Ministry Laboratory.
According to all of the physicians we interviewed there is currently a two to three month delay in receiving results of Viral Load tests. The reason for this delay was not clear to us.
The Global Fund in Nicaragua: A Source of Meaningful Change or an "obstacle?"
According to data provided by the Global Fund, as of February of 2006 NICASALUD has received $4 million in disbursements for its HIV/AIDS project, $1.3 million for the Tuberculosis component, and $3.3 million for the Malaria project.
The total budget for the five year project is $18.5 million, of which $8.6 million has now been disbursed.
All ARV treatment access in Nicaragua (again with the exception of the isolated Caribbean area) is supplied by the Global Fund. Ironically, this was not always the case. At one point the Nicaraguan government was forced to begin to provided anti-retroviral therapy. This occurred early in 2003 as a result of a petition filed by the Agua Buena Human Rights Association, which I direct, and the Human Rights NGO, CEJIL Mesoamerica, which was sent to the Inter-American Human Rights Commission in Washington. As a result of the petition, originally signed by 15 Nicaraguan PLWA, The Inter-American Commission ordered the Nicaraguan government to begin treating these first 15 individuals who petitions had been accepted by the Commission. After some delays, the government complied thus establishing the precedent for government funded treatment of PLWA.
Then, along comes the Global Fund with its "indicators" and what happens:
First of all, instead of continuing to scale up the pressure on the government to make care for People Living with HIV/AIDS a government priority, the Global Fund is viewed as the "rescuer," with all ARV procurement in Nicaragua provided by the Fund. Even the cost of therapy for the original 15 people, whose treatment had established the legal "precedent" of attention by the government, was transferred to the Global Fund, thus relieving the Government of any financial responsibility for ARV access.
What will happen when the Global Fund projects ends in 2008 is anybody's guess, but it was clear at one point, three years ago, that there was a rising tide of PLWA activism directed at the government and at the Health Ministry, but that the arrival of the GFATM served to partially stifle this activism, and that it is has not resurfaced in the sense of intense pressure on the Nicaraguan government to assume its role and responsibility for providing health care for People with HIV/AIDS. One of the most distressing conclusions of our visit relates to the "country driven" philosophy of the Fund. This philosophy allowed for a project to be accepted that will only treat 100 people per year, (and no funds for treatment of Opportunistic Infections!) and then, allowed the Government to yield its responsibility to the Fund, leaving other PLWA without any access, instead of at least beginning to take action to secure health care for all PLWA.
The role of the United Nations as Rector Agencies in the CCM functioning is another issue that requires urgent attention. As indicated we interviewed two members of the CCM, one from PAHO and one from UNFPA.
Dr. Aguiler, of PAHO, was very cooperative in indicating that he would seek answers to questions I raised in my interview, but it appeared curious that he was not already aware of these situations. He did indicate that he would be following up on the concerns I raised. I suggested that the role of UN Agencies and their representatives on the CCM should not be a passive one, and that questions needed to be raised about a variety of issues. Dr Aguiler indicated that Kaletra will be ordered and be available this year in Nicaragua, but he could not say when. As for the lack of available treatment, he referred to a possible donation from Brazil, but ignored my question as to why NICASALUD could not provide more treatment now, with surplus funds. Dr. Aguiler claimed to have heard that HIV tests are already being offered to all people with Tuberculosis, but he was the only one who made such a claim. All other sources indicated that this is not true. In general Dr. Aguiler's responses were perplexing.
As for Dr. Villanueva from UNFPA, was very candid. He readily acknowledged that he was not up-to-date on the issues relating to the project which I questioned him about, and was not even sure why he was on the list of people on the CCM found on the Global Fund website. He said he does not attend meetings since UNFPA does not vote.
Role of the CCM in Nicaragua
Given that $18 million dollars is a lot of money, one would hope that the CCM would be closely monitoring various situations we have mentioned, and many others as well, regarding the GFATM project, but, in the case of members from UN Agencies it was difficult to ascertain if this was so. I had the impression, however incorrect that it may be, that the UN staff members interviewed "identified" more with NICASALUD as "colleagues" and co-workers, than with the poor PLWA faced with unacceptable conditions. One of the weaknesses of the CCM's in the Latin American/Caribbean region has traditionally been that most CCM members are not the ones dying of AIDS. Many of them are from upper class backgrounds and, however inadvertently, have "absorbed" the classism that is rampant in these societies, where the divisions between rich and poor are striking.
(During our dinner meeting on February 7th, we even suggested to NICASALUD that they ask for permission from the Fund to change the "indicator" related to ARV in order to treat more people, and that they should also direct their efforts toward out-reach to provide HIV tests and CD4 services for the hundreds, or thousands who need treatment now, and then follow through by providing this treatment. (Actually according to the official figures provided by the fund, the final number of PLWA "expected" to be on treatment at the conclusion of the entire five year project is 390, and NICASALUD is apparently content with this number, although we would welcome information to the contrary)).
We hope that the Nicaraguan CCM, Global Fund Principal Recipient, and Nicaraguan Health Ministry, and PAHO will reply to our observations and conclusions. We also hope that the Global Fund Secretariat in Geneva will clarify some of the issues we have referred to.
*Director and **Project Assistant
Agua Buena Human Rights Association
San Jose, Costa Rica
Richard Stern firstname.lastname@example.org
Laura Porras email@example.com
Eugene Schiff (Caribbean Coordinator) firstname.lastname@example.org
Jaime Argueta (Guatemala/El Salvador: email@example.com
Esperanza Perez Cuadra (Nicaragua/Honduras) firstname.lastname@example.org