1/29/19
Dear friends,
Escaping the weather and Trump with another stay in Kigali. Always makes me feel guilty, but I do have lots to share with you about the work and challenges facing the WE-ACTx program here.
Most exciting news first. At a national meeting to review new 2019 Rwandan Ministry of Health HIV management guidelines, WE-ACTx for Hope (WFH), the WE-ACTx supported clinic in Kigali, was applauded as Number 1! WFH led every other clinic in Kigali in having the most patients with viral suppression, including youth, and best retention of all patients. Dr. Sabin Nsanzimana, Division Manager of HIV Disease Prevention and Control, Rwanda Biomedical Center personally called Chantal Benikegeri, WFH Director, by phone to congratulate her.
This achievement reflects much growth and hard work over the past year. The clinic now serves 2228 patients, a 9% increase over last year. Two thirds of the patients are stable and regularly attending their quarterly clinic and pharmacy visits, significantly above the country’s 50% level, and most of the other patients will be transitioned from monthly visits to this program as well. This system of fewer visits (with some also moving to 6 month visits), moving from monthly visits is greatly reducing staff workload and patient burden. Standardized measures of quality are also very high, with over 93% of all WFH patients having complete viral load suppression (to undetectable levels). Compare this to current U.S. studies reporting viral suppression rates of 86%, and finding racial disparities within this rate. Here’s a picture of the clinic staff after hearing the good news of the winning their award as the top clinic.
This expansion of the number of patients served by the clinic has also been accompanied by additional funding. Chantal successfully secured new funding from the Global Fund, an increase from the combined KCA-United Purpose fund, and a new grant from Elma Philanthropies. This diverse funding has helped sustain WFH’s strong status in Kigali.
The program faces many challenges, of course. The clinic now provides perinatal maternal to child transmission treatment (PMTCT) for about 30 women, but because of lack of space, they transfer the newborns out to district clinics for vaccinations and follow up. There were 120 babies born with HIV in Rwanda last year (a transmission rate of 1.5%) though no babies born infected at WFH. The new mothers at WFH would prefer to complete follow-up of their babies (all HIV-) at the WFH clinic, where they have developed trusting relationships, but this is not yet possible, as WFH cares only for those who have HIV.
The clinic has a new partner notification program in which patients agree to 1) tell their partners about their HIV infection and encourage them to get tested and care if needed, or 2) give nurse at WFH their partners contact information and have staff inform, test and link partners to care. As intuitively simple and important as this seems, given a host of cultural, logistical and care barriers, this represents an enormous step forward. Seroprevalence of partners is close to 10% compared 3% overall community rates. Although a government mandate to reduce number of new annual infections, partner notification is intensive and time consuming. More staff would ease this burden.
Making sure all patients are part of the country’s health insurance program is also essential for maintaining a well-functioning clinic and patients’ well-being. Patients apply for and pay fees to participate in the country-wide ”Mutuelle de Santé” a family-based insurance program for the poor which defrays cost of hospitalizations and medications. Recently, the staff found that previously orphaned children and youth currently living within non-biologic families are not able to obtain Mutuelle as they are not registered within the family, or the family is unable to pay for them. A youngster in this situation was recently hospitalized for a serious infection requiring surgery and his bill for hundreds of dollars needed to be covered by WE-ACTx.
Another group which continues to work with WE-ACTx and WFH’s patients is Musicians Without Borders, supporting Rwandan musicians and training many WFH youth to use music to help others. Some of you may remember a patient I talked about many years ago named Pretty. While away at boarding school and having emotional distress
from family issues, she was unable to take her antiretroviral medication and became very ill. She had some vascular complications including a stroke which left this very bright talented youngster unable to speak and significant arm weakness. We struggled to find a school to help her complete her secondary studies and supported several different ones. Now, she is still working with Ally, the Musicians Without Borders project leader here, and music and therapy is a high point of her week.
In Rwanda, the unemployment rate was reported at 16% during 2018, and is even higher among youth. Many young patients in WFH finish secondary school and even university and are unable to get jobs. Some are luckier and have completed their education, found work, married, and are raising children. I now pack books for babies instead of the latest music CDs for gifts for those followed in the clinic. Many of you have supported these young people in one way or another and they regularly express their thanks. One success story is Joseph Maniraguha. And many of you are part of it. Joseph was part of the first group of children followed at WFH in 2006. He was one of the youth leaders and an active participant in all activities. In 2009, he started practicing yoga when Madonna funded yoga as part of a year-long grant to WE-ACTx for psychosocial support. His teacher Deidre Summerbell, who has held many yoga sessions for WE-ACTx patients for years, and considers Joseph to be a “natural.” Joseph now enjoys teaching children with HIV, as he felt that yoga gave him the discipline and strength to manage his infection. His yoga training was supported by a very generous group from Chicago, leading to his mastery of many yoga course over the past several years, including a very intensive one in Kenya.
He was recently certified by the Africa Yoga Project. After teaching children in WFH program for several yeasr he has now just been hired by the spa at the One&Only Nyungwe House, an exclusive hotel set on a tea plantation within the Nyungwe Rain Forest in Gisakura, Western Province, Rwanda. (https://www.oneandonlyresorts.com/one-and-only-nyungwe-house-rwanda) We are very proud and happy for him.
Still much to do, but nice to see how well people can do when given the opportunities. Thank you for great support in 2018 and providing these for so many here in Kigali.
Salud,
Mardge
Women's Equity in Access to Care & Treatment