When I first started doing HIV and AIDS work in Africa, the only option for most of the people I served was making death as comfortable as possible. My most common experience during the first couple of years was, for example, sitting by the bedside of a woman in Zambia named Patience -- offering final prayers and then being told a week later that she had passed. Or visiting an organization in Zimbabwe one month and returning six months later to be told that the empty chairs I saw were those of colleagues I knew who had been taken by "Mukondombera," the euphemism for AIDS which in Shona means, "the thing that comes and wipes out entire villages."
Just under two years into my work, I found myself standing in a miner's hospital in Zambia that was scaling up from treating 50 patients to treating 1,000 in the space of a year with U.S. funding through the President's Emergency Plan for AIDS Relief (PEPFAR). This facility was one of dozens that were slated for similar scale-up, thrilling all of us who had been engaged in advocacy for treatment access. But, I asked myself, is such rapid growth advisable, and at what cost will this be achieved, literally and figuratively?
The first months of rapid scale-up were fraught with problems at all levels. At the global level there was little attempt to coordinate efforts by the various entities, including the PEPFAR, the Clinton Foundation, The Global Fund to Fight AIDS, TB and Malaria, the WHO 3x5 Initiative, and others. One wonders what opportunities to streamline efforts and optimize resources may have been lost by this lack of cooperation. Not to mention the confusion that reigned at beleaguered national governments and facilities bombarded by the intense engagement of these various entities, each with distinct policies and practices.
To start, in spite of the efforts of the Clinton Foundation, access to affordable drugs is still being blocked by regulations established by the World Trade Organization and other trade agreements [see "Free Trade, Expensive Drugs" in this issue]. For example, a letter was recently sent by Boehringer Ingelheim informing Drug Supply Organizations (DSOs) that they are in violation of licensing agreements if they purchase the HIV drug nevirapine from any supplier other than their approved partners. The DSOs complain that those suppliers are not accessible in some countries and that the only affordable sources of this life-saving drug are not on the approved list. They plan to continue procuring from the nonapproved sources, but fear retribution if they persist.
Often nations or facilities have planned a slow rate of scale-up due to a desire to carefully refine procedures, while donor entities are driven by political or other pressures to achieve exponential rates of scale-up.
Organizational culture shifts are a challenge. For example, one facility in West Africa struggled with shifting from the spirit of a virtually all-volunteer facility to dealing with external partners who provided much needed additional resources, but at the cost of the community culture that had made the facility a success for decades.
Some facilities suffered from a lack of absorptive capacity to handle the excessive level of new resources. And the shortage of doctors, nurses, and community health workers was pervasive in all of the countries in which I served [see "Pills Without Providers: Where Are The Health Workers?" in this issue].
AIDS is just one of many conditions that burden resource-strapped health systems. With the rush to respond, countries must deal with entities like Pfizer's Diflucan Partnership Program (DPP), which provides crucially needed fluconazole and a support system for tracking diagnoses, dosage, and utilization. However, the DPP is an exceedingly complex donation program. Other programs include the Access program for Determine HIV test kits, the nevirapine and tibozole donation programs, and various entities supporting HIV meds, etc. Efforts to take advantage of these disparate programs consume national governments and facilities with the intense energy needed to manage these various resources.
Lack of nutrition is a substantial concern. There are many cases where people with HIV can obtain medicines through free public programs but cannot afford the food necessary for maintaining a healthy immune system and for the practical intake of the medicine. In Malawi, home-based care providers from the Central Church of the African Presbytery told of families who prioritized food above treatment. Clients told them, "Treatment without food is as good as water without a cup."
In certain countries, organizations lamented the marginalization of certain groups who aren't commonly in urban areas and thus are not incorporated in roll-out of treatment programming. Examples included the San People of the Kalahari Desert in Botswana and the Maasai in Kenya and Tanzania. Because these groups tend to be nomadic they require specialized outreach and often are not reached by testing and treatment programs based in stationary clinics.
Issues of trust are paramount. In Swaziland, a member of parliament told me that when people become sick they first go to their tribe's chief, then its headsmen, and then to the church -- the hospital clinic is often not even considered. One headsman came to an AIDS training session and stated, "AIDS is like the wind. You don't know where it comes from and you don't know where it's going, so you have to do what you can."
A partner in Zambia estimated that 80% of people who are sick go to a traditional healer due to a longstanding trust in this approach and the fear that they have been bewitched and require this kind of attention. One man developed Kaposi's Sarcoma (an AIDS-related skin cancer) and went to a traditional healer who treated him with a variety of procedures including giving him a tattoo. Not only was there no progress, but the tattoo actually became infected. Finally, given his decline, community workers were able to convince him to go to the hospital where began HIV treatment To prevent the trust in traditional practices from becoming a barrier to people with HIV receiving care and treatment provided in clinics, avenues should be sought to incorporate the alternative practices of traditional healers into national systems.
People also trust traditional healers to maintain their privacy. Stigma and discrimination in the workplace, community, church, healthcare settings, and their own families continue to prevent individuals from visiting the clinic. And if a person is tested and starts HIV treatment, stigma may prevent disclosure to family and community members. Adherence is difficult in the best of circumstances, and certainly all the more challenging when one is hiding medicine or avoiding the local clinic.
One pastor in Zambia who was deathly ill traveled over 300 miles to Lusaka for care because he feared disclosure would damage his standing as a pillar of his community. He also decided to buy his meds there (his property ownership disqualified him from receiving them free, though his finances were fairly dire). So he had the combined expense of the drugs plus the exorbitant cost of travel. This may have affected his ability to maintain a steady supply, as his health was still fairly poor after some time on treatment. The irony was that people had already guessed his status from his appearance and had asked the local HIV doc to intervene. So all of the covert activity may have been for naught.
Due to PEPFAR's requirement that all drugs used must be approved by the FDA, partners in Kenya, Uganda, and Nigeria reported that some people went from taking two pills a day that combined drugs to taking six separate pills a day. Adherence is challenged by the unpleasantness of repeated pill-swallowing and the confusion of having so many pills to manage. This is further complicated by reports that family members were pill-sharing with other sick family members who were not on treatment, resulting in failed treatment and the need for extremely expensive salvage therapy. Requiring FDA approval of all PEPFAR drugs highlights a bit of double-speak on the part of PEPFAR administrators, who say, "Let Africa lead," but then imply that African governments don't have the technical acumen to judge which drugs are best for their citizens.
The Clinton Foundation worked with several governments and generic drug producers in India to facilitate the availability of low-cost generic HIV drugs as well as lab equipment and supplies. The Global Fund is releasing money to governments to support treatment. When Haiti was facing a human resource shortage, Cuba provided almost 400 doctors and enabled Haiti to deliver care to thousands. PEPFAR supported the AIDS Relief Program, which provides treatment to thousands in nine countries in over 100 partner facilities, largely faith-based hospitals.
With the onset of treatment scale-up I saw time and time again the "Lazarus effect" in patients, colleagues, and friends. Now I know people who are truly living with the virus, not just surviving but actually thriving. At the International Conference on AIDS and STDs in Africa I met a man from the Kano State in Nigeria who went from being bedridden and unsure of whether he would still be alive the next month to being on HIV treatment and able to provide for his family through his job as an HIV testing counselor. I met with members of a women's HIV group in Kenya who spoke actively and positively about their future while advocating for the needs of their sisters. Now when I learn that someone has HIV and is not receiving care and treatment, there are options and I know where to make a referral.
At Selian Lutheran Hospital in Arusha, Tanzania, the program to prevent mother-to-child transmission has raised the rate of women being tested from zero to 85%. They attribute the increase to the advent of hope from treatment options for the parents and the availability of drugs to reduce the chance of transmission to the infant. One key strength of this program is that it is a community-based model featuring outreach to demystify the services offered at the hospital.
What about the lack of pediatric formulations? When I was in Tanzania one doctor told me that the only treatment option for a child was a dosage of a liter of liquid. When the mother was leaving the hospital with literally a wheelbarrow full of this medicine she was stopped at the gate by the guard, who thought she was stealing due to the sheer quantity. Another doctor told me she was compelled to crush up adult tablets and portion out the amount she prayed was an appropriate dosage for a child. But these extraordinary measures are the exception -- for the most part, children just aren't being treated.
Dialogue about what's working and what's not must be strengthened. At a recent meeting of the Ecumenical Pharmaceutical Network, I heard that pseudo "gag orders" are being issued to certain facilities. They sense a threat of funding withdrawal if they speak out on flaws in the policies imposed by certain sources. Everyone must be heard, from administrators to patients, if we are to evaluate and improve systems for providing universal treatment. Meaningful engagement of people with HIV in policy, planning, and implementation is essential, with emphasis on "meaningful" as opposed to the tokenism that currently reigns.
A coordinated response from civil society is the key to applying pressure on established structures for the above changes. Attitude change is necessary, from educating the individuals who stigmatize people with HIV, to a metamorphosis at the community level, to a global increase in the political will demanded by this crisis.
One of my closest friends, Adisa, lost his best friend to AIDS. He only learned that Malcolm had AIDS when he was in the hospital with diminished eyesight and dementia. The doctor, assuming that Adisa knew the cause, spoke casually about Malcolm's HIV. Malcolm hadn't disclosed to anyone, but had instead withdrawn from his social circles and deprived himself of support as well as medical treatment. Malcolm's health rallied soon after Adisa's visit, with the help of medication and increased support from Adisa. However, a few months later, my friend was standing by the gravesite offering comfort to Malcolm's mother, the only other person in the world besides me and the medical team who knew about Malcolm's status.
It still pains me deeply that I was not there for Adisa during these times because I was spending all of my time on the other side of the world in the albeit worthy endeavor of working with my brothers and sisters in Africa. Sometimes it seems that there are not enough arms in the world to go around the many who are in need of comfort. There are certainly not enough voices turning up the volume on the outrage that in this world of plenty and excess, relatively little is being done to prevent thousands of daily deaths, particularly in communities of color around the world.
Jacqui Patterson is a consultant in international health, specializing in HIV/AIDS and CBO capacity building.