Lwala Comprehensive HIV Program Concept
by Joel Wickre
I. Background
I’ve spent about 6 months in Lwala over the last 3 years. In March ’07 I did a week of group and individual interviews with the Riana PLWHA group (located across the river from Lwala in Kameji) to solicit their attitudes and opinions about a comprehensive HIV/AIDS program at the Lwala clinic. I also led a few education days with that group, and participated in the formation of a similar group in Lwala, the Lwala PLWHA group. In March ’07 these two groups each submitted a proposal to me for a comprehensive HIV/AIDS program they would lead. In ’05 and ‘06 I did a bunch of research on HAART adherence for a child development organization, which included interviewing hundreds of people on HAART throughout
II. Principles
- HIV is a socially embedded disease that demands significant changes in entrenched community norms, and the most effective response will be an empowerment of community social structures that have the power to influence knowledge, attitudes and behavior.
- HIV testing should be a routine part of clinical care, demystified as much as possible by being treated as just another disease.
- Effective AIDS care requires more than distribution of HAART, it also demands adherence support, nutritional support, and social and economic support.
- HIV/AIDS exerts a major influence on community mental health, and the impact of death and loss must be addressed.
- Major national and international monies are available for HAART and other components of HIV care, and the clinic should take advantage of these whenever possible
III. Clinic based testing and treatment
Comprehensive medical services for AIDS should be offered at the clinic, including HIV testing and HAART. Several human and laboratory resources are necessary to make this possible. In order to provide treatment, the clinic needs the ability to do HIV testing and CD4 counts. HIV testing can be managed with cheap and simple finger stick or cheek swab tests. Options for CD4 counting need to be investigated, both the possibility of obtaining the necessary lab equipment and the possibility of sending samples out to an independent or MOH lab for testing. In order to provide adequate pre- and post-test counseling, the clinic should hire and train someone to be an HIV test counselor. It would be preferable to hire and train someone from outside the village to provide anonymity, as many people would probably not come if the counselor were a local due to risk of disclosure. This is likely a half time job, so it may be possible to train someone who will be hired for another job as well, such as a maternity nurse. HIV testing should be provided both as a routine part of medical care and on specific days on its own. This nurse could offer HIV testing one day of the week to people who wish to come for HIV tests only, and could also organize occasional HIV testing events or fairs in collaboration with the HIV support groups. In his/her other clinic capacity, such as maternity nurse, this person would be on hand to provide HIV testing and counseling whenever it is medically indicated in the process of care.
With the ability to test for HIV and to obtain CD4 counts, the clinic would need two things in place to provide medical treatment for AIDS. These are a trained clinician and a steady supply of HAART. Avenues for acquiring this training and HAART need to be investigated. HAART is available through a central agency in
IV. Home Based Care and Adherence Support
HAART is not effective without scrupulous adherence. The most effective way to ensure adherence is through directly observed therapy (DOT), which has been pioneered for AIDS care by our friends at PIH. This requires a trained health worker visiting each patient in their home daily to check in, give them that day’s medicine and watch them take one dose. These health workers also provide social and emotional support, and assist the family with home-based nursing care as necessary. Some of the members of the women’s groups and HIV/AIDS support groups are already playing this role informally, assisting one another as treatment partners. PIH trains, equips and pays each health worker a small stipend, and expects them to visit around 5 patients daily, all near their home. This work is not intended to be their primary occupation. I’ve found informally that the most passionate health workers are people who are themselves on HAART, and that most patients can establish their own routine and be weaned from DOT after a year or so. The members of the Lwala and Kameji AIDS support groups are very excited about the possibility of receiving training and basic equipment to play this role. It would require providing training, some basic supplies such as gloves and soap, and having a coordinator to manage the pairings and be available to address any problems.
V. Nutritional Support
Many effective AIDS treatment programs spend more on food supplements than on medication (This is the case for PIH). For people who are weak with late stage AIDS, food supplements are entirely appropriate. However, as people gain strength, programs that help them grow their own food can be both less expensive and more encouraging of self-efficacy. Members of the PLWHA groups in Kameji are already doing communal gardening of vegetables. They suggested providing agricultural rather than food supplements, such as fertilizer and plowing assistance. Since many people with AIDS have lost family members, and it’s principally the people of productive age who have died, many people don’t have family members who can help with plowing. Consequently they plow by hand and can’t plow a large enough area to grow all the food they need.
I recommend a two stage program. First, there would be a demonstration garden at the clinic, which would display innovative farming techniques such as intercropping, drip irrigation, composting, and feed bag gardens. The produce of this garden would be given to people who are extremely ill with AIDS and are consequently unable to grow their own food. Whether it’s better to do this at the clinic with the assistance of the PLWHA groups or to help each PLWHA group plant such a garden should be investigated. Once patients had recovered to some degree, an agricultural extension worker would visit them at home with their appointed community health worker, and help them implement innovative gardening strategies being practiced and refined at the clinic demonstration garden. They would receive plowing assistance and fertilizer supplements and occasional visits from the agricultural extension officer to augment their efforts. Again, this support would be integrated with the efforts of the PLWHA groups.
Some kind of agricultural staff person would need to be hired, who could coordinate the garden at the clinic and provide extension visits to people in their homes. This person would work hand in hand with the PLWHA groups. The exact design of this nutritional program needs more investigation.
VI. Income Generation Support
Each of the proposals I received from the PLWHA groups included significant income generation assistance programs. These proposed income generating activities for the groups themselves, both poultry projects and oxen for plowing. It should be possible to integrate income generation for these groups into the nutritional support program. If each group has an ox team and plow, the clinic could pay them something to provide plowing services to people receiving HAART from the clinic. If each group has a poultry project, the clinic could buy their eggs as nutritional supplements for its HAART patients. This may sound a bit circular, but it’s a good way to inject some financial resources into the lives of people with AIDS while helping them feel responsible and effective. This is a step up from the financial support packages PIH offers.
VII. Social and Emotional Support
The PLWHA groups already provided social and emotional support at some level. We should ask the groups and their leaders to think about how they could be assisted in providing social and emotional support for their members, and for others in the community. Emotional support and counseling should also be one element of the training the community health workers receive before assisting HAART patients in their homes.
VIII. Education
Both PLWHA groups are already providing education, but they lack important information to provide effective education to their members and the community at large. There are a lot of misconceptions, and people have a very basic understanding of biology, but at the same time people have very high level questions about CD4 cells, the pharmacodynamics of HAART, etc. Both groups also proposed being the major providers of education in their communities. This is a model I’ve seen work in many places. There is no more eloquent teacher about the risks of HIV/AIDS and the importance of being tested than someone “living positively” with HIV. They suggested doing a combination of public awareness campaigns, public events, and smaller seminars about HIV/AIDS. I think the best model would be to a subset of group members with training, and then to help them coordinate community education activities. These public activities could include the strategies that have resonated with Milton and Fred, such as soccer tournaments. Again, the specifics need investigation and development.
IX. Program Coordination and Leadership
The program outlined above has a lot of moving parts. I would recommend organizing it as follows. It would all be overseen by the clinic manager. Beneath him would be a pair – coordinator of health outreach and coordinator of education and nutrition. I would hire Yucabeth Ojwang as coordinator of health outreach. She would coordinate training and employment of community health workers, and assure that everyone is being visited and cared for effectively. She already provides tons of home based care, she started the Lwala PLWHA group, and she has more influence over women in the area than almost anyone else. I would hire Pastor Alfred Omolo as coordinator of education and nutrition. He is a seminal male member of the Riana PLWHA group, he has a big vision for youth HIV education, and he is an avid experimental farmer and gardener. He would coordinate training for HIV educators and educational outreach. He would also oversee the clinic garden. I would hire an agricultural extension officer to work under him on the farm and visiting patients’ homes. Also, of course we would need to hire and train an HIV test counselor, who would also work in some other capacity in the clinic, also under Omondi’s leadership.
X. Steps Forward
A complex program like this one requires scrupulous planning and budgeting and a good roll-out plan. I would suggest that Omar develop a list of questions that need to be answered to develop this program prior to going to Lwala. Once there, he should work on answering those questions, and if time allows, design a more complete program plan with rollout and budget information. He can then collaborate with me to finalize program design, and we can submit it to the LCA Board for approval and budget planning purposes, and we can go from there.
