ImpActAIDS Newsletter

In 2003 the IAEN launched a Global Dialogue Series.
In June 2004, their featured guest was Paul Farmer of the Clinique Bon Sauveur and the Brigham and Women's Hospital.

Paul Farmer, MD, PhD, is Medical Director of the Clinique Bon Sauveur in Cange, Haiti, and also Chief of the Division of Social Medicine and Health Inequalities at the Brigham and Women's Hospital in Boston. He is an authority on HIV / AIDS, tuberculosis, and other infectious disease. Haiti was the first country to receive Global Fund support, reflecting in part the respect of the work undertaken in Haiti by Dr. Farmer and colleagues. He is also the subject of a recent bestselling book "Mountains Beyond Mountains: The Quest of Dr. Paul Farmer, A Man Who Would Cure the World."

QUESTION 1: What are the latest lessons from Haiti applicable to the global battle against AIDS?
PAUL FARMER: I think Haiti offers good lessons and bad, but mostly good. At a time when we rarely hear good news about either AIDS or Haiti, we can still point to good news about AIDS in Haiti. First, two decades of innovative AIDS prevention, which have included close attention to other STDs and to tuberculosis and women's health, have started to pay dividends: Haiti's AIDS epidemic is contracting, with sentinel surveillance showing unmistakable declines in prevalence. In our own prenatal clinics in central Haiti, where we introduced pMTCT pretty early on, we've seen a decline from about 6% of patients accepting VCT to under 3% -- and this has been seen elsewhere in the country, too. Another key development here has been the integration of HIV prevention and care. Wven during the awful political mess here, which continues to this day, we have seen our community health workers - "accompagnateurs" -- deliver daily services to their neighbors living with advanced HIV disease.

QUESTION 2: What are specific examples of ways that treatment and prevention are interlinked in Haiti?
PAUL FARMER: It's becoming increasingly obvious that one of the best ways to improve HIV prevention is to improve care for those living with HIV disease. Granted, ours is a small project, but there's no question that interest in VCT has skyrocketed with the introduction of comprehensive HIV care, including access to ARVs for those who need them. The numbers are telling. We're moving from offering VCT to a few thousand people a year in the pre-GFATM era to having between 20,000 to 30,000 people accepting VCT each year. Second, the great majority of women in prenatal clinics here now see VCT as part of routine care. Third, we spend a lot of time thinking about "secondary prevention" by working closely with people living with HIV, incorporating them into prevention efforts and delivery of care. Fourth, patients who have undetectable viral loads are not only in close contact with providers, and hearing and sharing prevention messages, they are also "less infectious." Better care improves HIV prevention in many ways.

QUESTION 3: What are the most important steps that countries should take that currently have low prevalence of HIV?
PAUL FARMER: I'd argue that such countries should act promptly to integrate HIV prevention and care. One of the problems with designating some countries as "too poor" for HIV care is that this has worsened stigma around the disease. If an HIV diagnosis is seen as a death sentence, we're asked, what's the point of being tested? This was a major error over the past few years, and for countries with low prevalence, seeing good HIV care as a right can prevent, I believe, a major expansion. Brazil has done a good job in this arena but few countries have good legislation enacted. Another step is to understand the local dynamics of the epidemic. In Russia and the FSU, injection drug use is fanning the epidemic, so harm reduction is the way to prevent a major expansion of the epidemic there. In many countries in Africa, poverty and gender inequality are the major co-factors and so these social problems need to be addressed at the same time as integrated prevention and care are introduced. Of course, it's late in the game for most countries in Africa, but there's still a lot to be done.

QUESTION 4: Where do you see the biggest mismatches between what is receiving funding and what should be receiving funding internationally?
PAUL FARMER: Those who set policies for the poorest countries have taken a somewhat nihilist approach, arguing that only HIV prevention is possible. Alas, prevention without care is not going to give the results we want. Also important is attention to tuberculosis, STDs, and women's health. But the biggest mismatch is of course the fact that the smallest amounts of money are going to the countries with the biggest epidemics. I'm also worried that the international financial institutions are giving mixed messages to Ministries of Health and Education in poor countries. On the one hand, they're instructed to cap social spending and on the other they're called to do a better job preventing HIV transmission and caring for those already affected. The IFIs should do a better job at recognizing health emergencies.

QUESTION 5: AIDS professionals from around the world will gather in Bangkok in July. What would you like to see as the principal messages or results coming from the conference?
PAUL FARMER: I think that it would be great if there were no more skirmishes between the prevention and care camps -- HIV prevention and care need to be integrated fully. I think that we should demand that more resources be invested in the biggest epidemic ever recorded. Is it really impossible to develop a vaccine? I think not. I also believe that promoting the notion of HIV prevention and care as "public goods"-- that is, taking a rights-based approach to AIDS-- is a key desideratum. And I think that community-based care for HIV disease should be seen as the standard of care. I also believe that all countries, especially the rich ones, should invest more in the Global Fund for AIDS, TB, and Malaria.

QUESTION 6: What books or reports do you suggest that every AIDS policy maker have on their desk?
PAUL FARMER: The most recent WHO World Health Report covers many of these issues; the GFATM report gives an idea of how many countries are now involved in responding to the epidemic. But alas there remains too large a divorce between technical manuals (how to manage the disease in resource-poor settings) and books that attempt to lend a human face to the suffering caused by HIV and other epidemic diseases. We still need a "road map for decency" that is technically sound and informed by a rights-based approach.

Below is included a representative set of questions and comments IAEN received, with answers from Dr. Farmer.

Walter Ollor
Nigeria
What will a rights-based national program which is community-based, for a country like Haiti, cost on an annual basis?
Paul Farmer: Well, first the background elements of the formula would depend on the epidemiology of the disease locally, how many resources would be available, how effective advocacy to move funding around it, etc. It would depend on availability of clean water and primary education. Because a rights-based approach would have AIDS prevention and care considered a "public good" like TB is-- case detection and care are considered public matters and people have a right to TB care regardless of ability to pay.
So say you agree that the poor in Nigeria have the right to AIDS care. which is based on a solid 3-drug regimen. These can cost as little as $140/pt/yr-- so I've no doubt the cost-effectiveness gurus will find this intervention cost-effective. The patients would not pay for these meds, nor for their supervision with the help of community health workers. With that modality and some lab tests, you can give good AIDS care for $500/yr/.
But what if you think breastfeeding moms with HIV have a RIGHT to milk? That their kids have a RIGHT to primary education? We believe all these things, so we budget that in too.

Damber Gurung
United States
What lessons can we learn from Haiti experience to apply in the US, especially for cities where the prevalence rate is quite high?
Paul Farmer: We've gone ahead an applied these lessons in the poorer parts of Boston, where we follow essentially the Haiti model of community-based care delivered by outreach workers and have described this experience in a recent supplement to CID (Behforouz and Farmer, 2004). We are already learning the same lessons-- better outcomes whether we follow hospitalization, CD4 cts, viral load, quality of life, etc. Article link: http://www.brighamandwomens.org/socialmedicine/publications.asp

Garance Upham
Switzerland
In your interview, you bring up many very important ideas and committment. But you do not mention the fact that poor communities have more HIV because, also, twenty years into the epidemic, we still don't have safe blood in most part of Africa and poor communities of Asia, and we still allow rundown dilapidated collapsed health care systems to re-use unsterilisable disposable needles...! Prevention should mean safe injection and stronger safer health systems! Please your comments on that would be welcome.
Paul Farmer: Hello, Garance. Couldn't agree more and that's why one of the first things we did when we received GFATM money was to put in a new blood bank here in central Haiti. We'd introduced sterile needle disposal in the 80s. The problem in some of these places originates in centers of power outside of Africa-- Washington DC and Paris, for example-- where champions of privatization and other neoliberal schemes are weakening the public health sector.

Ekaterina Petkova
United States
How long do you think it will take the world to start producing a vaccine (5, 10...years more)? I was impressed by your statement "Is it really impossible to develop a vaccine? I think not." Could you please develop more what you mean by this statement? Which do you think are the reasons for waiting such a long time to develop a vaccine?
Paul Farmer: I think we will see better vaccines within the next 15 years, but I'm not a scientist and am focused on the short-term-- what will happen in the interim. When we do have a vaccine, will we have an "equity program" to see that the good vaccine gets to the right people? We sure don't have one for ARVs!

V.V. Cook
United States
Who are the most influential individuals in a position to make an impact on international economics and the AIDS crisis? Are they the leaders of the World Bank? The IMF? Or the leaders of the G-8? Pop stars? Are you aware of any truly meritorious ideas for approaching the crisis that are being ignored for any bureaucratic, political or ideological reasons?
Paul Farmer: My guess is that you've made a good list. Of course organized people living with HIV can have a big impact, too. Neglected ideas? Complete integration of prevention and care; community-based and supervised care (what we've called "DOT-HAART"); the importance of linking AIDS projects to women's health and TB projects. These are complex health interventions but can be done in very resource-poor settings. I am writing you from rural Haiti, where we're doing all of this stuff.

Rose C. Nwigwe
Nigeria
What Reports and materials do you suggest every NGO working on HIV/AIDS should possess?
Paul Farmer: I hope this doesn't sound self-serving, but Partners In Health has published a handbook on The Community-based Care of AIDS in Resource Poor Settings, and it's available for free from our Web site, http://www.pih.org/. We made a lot of protocols as if certain lab tests might or might not be available. Publication link: http://www.pih.org/library/aids/index.html .

For more information about any of these global dialogues please e-mail info@iaen.org.

Making patients in impoverished countries contribute towards the cost of their antiretroviral treatment is one of the major causes of non-adherence to treatment according to presentations earlier this month at the Fifteenth International AIDS Conference in Bangkok.

Charges for treatment are widespread in resource-limited settings and some degree of user fee funding of health care has been promoted as an orthodoxy in public finance over the past fifteen years by the World Bank and donor governments.

However researchers from Senegal, which has one of Africa’s most longest standing public sector treatment programmes, reported to the conference that charging does affect adherence. They also found that the longer patients stay on treatment, the more difficulties they have with adherence.

Senegal

The Senegalese study, conducted in collaboration with the French AIDS research body ANRS, followed 159 patients for a maximum of 54 months to monitor their adherence to treatment. Half were taking a triple combination including efavirenz, 38% were taking a triple combination containing indinavir, and the remainder were taking either dual nucleoside analogue combinations or combinations containing either nevirapine or nelfinavir. Eighty were taking part in clinical trials and thus might be expected to have a higher level of adherence due to more frequent monitoring.

Until 2000 all patients apart from those in trials were required to pay around $35 a month for treatment. In 2001 patients without finance were given antiretrovirals free of charge, and in 2003 the government was able to introduce free antiretroviral treatment for all.

The study found a mean monthly adherence rate of 90.2% over 54 months of follow-up.

In 1999-2000 over 50% of patients who interrupted treatment for more than five days reported that the treatment break was due to financial problems. By 2003 this proportion had fallen to 15%, with travel and voluntary treatment interruptions the chief reasons for treatment breaks.

Cost of treatment and duration of treatment, as well as commencing treatment with symptomatic HIV disease, were associated with poorer adherence.

The authors recommended that measures to support long-term adherence need to be planned at the outset of therapy (Laniece).

A small study in Nigeria which followed adherence in 53 patients (40 who received free medication and 13 who paid for treatment) found a trend towards better adherence in those who received free treatment, although this was not statistically significant (85% vs 61% reported adherence of at least 95% during the past seven days, p = 0.069). The most frequently reported reason for non-adherence was inability to afford medication (Daniel).

However, even where patients must pay for treatment very good levels of adherence have been reported during the first 12-24 weeks of therapy.

Uganda

Ugandan researchers working in collaboration with a team from the University of California San Francisco assessed adherence during the first 24 weeks of treatment in 97 patients who began treatment with either Triomune or Maxivir. The findings, published in a preliminary form in the August 15^th edition of the Journal of Acquired Immune Deficiency Syndromes , were updated at the XV International AIDS Conference.

The study compared four measures of adherence: three-day patient self-report of the number of number of doses missed, 30-day visual analogue scale of percentage of pills missed, electronic medication monitoring and unannounced home pill count. Patient adherence assessments were carried out monthly during the first twelve weeks of treatment during home visits.

Ninety seven patients began treatment, but 10% had to discontinue treatment due to the diagnosis of active TB (tuberculosis treatment with rifampicin reduces nevirapine levels).

One third had primary education only, 63% were female and one quarter were unemployed. During the first phase of the study, reported in JAIDS, 53% of patients had a monthly income of less than US$50 a month, a modest income by Ugandan standards. Triomune cost $US20-25 a month during the period reported (Sept 2002-July 2003), implying a substantial monthly expenditure on medication.

During this phase of the study, mean adherence was measured at 94.4% by three day report, 93.5% by thirty day report, 90.9% by electronic medication monitoring and 93.7% by pill count. There was no significant difference between any of these measures, suggesting that three day or thirty day report are equally valid measures of adherence in the Ugandan setting. The investigators note that the thirty day scale, which asks patients to draw a line on a scale indicating what proportion of pills they have taken, proved considerably easier to administer. Surprisingly its results were concordant with those of the three day pill taking report, despite using a more abstract measure of pill taking.

Viral load at week 12 was significantly associated with all measures of adherence. A non-significant decline in adherence between weeks 12 and 24 was reported to the International AIDS Conference, suggesting that longer term studies of adherence are needed in the African context.

The chief limitation of the study, say its authors, is the possibility that the monitoring method (home visits) may have reinforced adherence. However, given that most programmes now introducing antiretrovirals in Africa include some form of adherence support, this limitation is unlikely to affect the generalisability of these data.

A more important caveat is the authors’ reminder that their study looked at adherence to one pill twice a day (Triomune is a coformulation of three drugs). They comment: “Adherence to more complicated regimens might be lower.” Evidence from Spain also presented at the conference showed that when patients switched to a regimen with a lower pill burden, their adherence improved (see Fewer pills mean better adherence, says Spanish study). Typically patients switched from a protease inhibitor containing regimen with higher pill burden to a compact regimen of one efavirenz tablet and one or two nucleoside analogue tablets twice a day. More detailed comparison of how smaller differences in pill burden has not been carried out.

References

Laniece I et al. Determinants of long-term adherence to antiretroviral drugs among adults followed for over four years in Dakar, Senegal. XV International AIDS Conference, Bangkok, abstract WeOrC1320, 2004.

Daniel OJ et al. Adherence pattern to ARV drugs among AIDS patients on self-purchased drugs and those on free medications in Sagamu, Nigeria. XV International AIDS Conference, Bangkok, abstract WePeB5768, 2004.

Oyugi JH et al. Treatment outcomes and adherence to Triomune and Maxivir in Kampala, Uganda. XV International AIDS Conference, Bangkok, abstract WeOrC1323, 2004.

Oyugi JH et al. Multiple validated measures of adherence indicate high levels of adherence to generic HIV antiretroviral therapy in a resource-limited setting. JAIDS 36(5): 1100-02, 2004.

Is paying for treatment affecting adherence in Africa?