It has now been 6 years since WE-ACTx responded to a call by women’s associations to fast track HIV care and medications to their members. So much has changed since then, for me, for those women, for our program, for Rwanda, for global HIV, that it is worth reflecting on what we have accomplished, where we are now, and where we would like and need to go.
I want to share the many successes, but of course I know you expect transparency about our challenges and shortfalls of our work here as well. And I want to be mindful that, with everything going on in Haiti (which has many linkages with Rwanda, as they are the two most densely populated countries, both have sad histories, and Paul Farmer and PIH have major programs in both countries) and elsewhere, that there is much competition for your interest and your generosity. I write these updates each time I come here to show my appreciation of your support, and feeling that sharing this first hand knowledge of the growth, improvements, gaps and inadequacies is important to sustain our commitment to each other and the people here. When I am here in Kigali, so many other global pressing priorities seem distant, but I am very aware that our program is a small project—making a difference, yes; and a good model, yes– but we all need to support so much more here and elsewhere. Many of you responded last fall to help us meet our fundraising goal, and because of you, we did.
First, some very gratifying good news. Patients continue to appreciate the services offered at WE-ACTx. While we were concerned about our consolidation from 3 clinics down to two—closing the Icyuzuzo clinic and transferring patients to Centreville–there has been little disruption in care. Since July, 423 of the 456 (93%) Icyuzuzo patients taking antiretroiviral therapy (ART) have transferred and now access CD4 monitoring and ART at the combined Centreville clinic site. Some of the Icyuzuzo patients not yet on ART, have chosen to monitor their CD4 cell counts elsewhere, but more than 300 of these patients have also transferred their care to Centreville.
We are utilizing a combination of electronic data bases, chart review, home visits, and clinical monitoring to ensure the continuing visit retention, and ART and CD4 monitoring adherence. We now are able to determine monthly which patients on ART have declining CD4 cell counts so we can immediately address their obstacles to adherence. We expect to expand and simplify these quality improvement efforts with the help of a newly arrived volunteer (Allison Wilcox) who worked in Gordy’s patient safety and quality improvement center in Boston. We currently have a total of 3492 enrolled in HIV care, and over 1400 on ART. Hundreds have been seen by the in-clinic psychiatric nurse and other members of the psychosocial team. This is in addition to our testing and outreach programs which have reached over 24,000 people.
Today, at the all staff meeting, one of the cleaners raised her hand at the end of the meeting and said she wanted to thank WE-ACTx for making her strong. She described first coming to the clinic in a very weak state 5 years ago with a CD4 count of 107. She started on ART and she did well. She has a CD4 count of 716 now, and works every day.
Ineza, the WE-ACTx sewing collective (initially started to give newly treated women not just the ability to survive, but jobs and income to put food on the table and raise their children, many of whom were infected) has now become an official independent cooperative in Rwanda. The members have a governing structure and are learning English, computer and business skills. The women support each other, as they recover from the trauma of the genocide, and cope with their HIV and poverty. The sisterhood is palpable when you enter the sewing room. Many of you have seen and purchased their beautiful bags, dolls and other products. With the help of WE-ACTx volunteers (Jess Early and Sasha Hamilton), they have expanded their local markets and started a new blog (http://inezacooperative.wordpress.com). Those of you in Boston (March 26 and 27), Chicago, and San Francisco (March 21) should save the date and join us at concert/readings/fundraisers at which you will be able to purchase the latest crop of their beautiful products. I’m particularly smitten with the new luggage tags and heart shaped ecological shopping bags.
The Nyacyonga clinic on the outskirts of Kigali
WE-ACTx psychosocial care continues to expand. The Nyacyonga (the clinic on the outskirts of Kigali) children and parents Saturday support groups have more members, and the post partum income generation basket program has been very successful. This will likely be incorporated as the next independent cooperative. A total of 34 women and 50 children attend these various groups and activities.
The youth peer leadership program is reaching new heights as it builds on the work of many volunteers over the years with the older youth in the WE-ACTx program. Currently, 9 youth lead groups of 20-30 younger children during the Sunday Children’s Support Group. These specially trained leaders are looking forward to being counselors at the second annual WE-ACTx Youth Summer Camp, working with a group of returning and new volunteers. They will be assisted by a group of Chicago students from Latin High School, which now includes WE-ACTx as one of their summer international projects.
The peer leaders have submitted 2 abstracts which we hope they can present to the International AIDS Conference in Vienna in July 2010 on their organization Youth Ending Stigma and their intergenerational work with the Ineza cooperative teaching computer skills and learning from elders.
Ineza cooperative teaching computer skills and learning from elders
Some of the youth, however, who are enrolled in the WE-ACTx clinic are having a harder time. We are beginning to see older teens who refuse to take antiretrovirals or don’t make their scheduled clinic visits (common problem among U.S. youth with HIV). Some have lost their parents, have been abused, or are with older men. Ensuring that the psychosocial team and the clinical team work together to create the best environment for youth to make good decisions seems to be as challenging in Kigali as it is in the states. We are having a mini retreat for the clinical and mental health teams to work on this integration next week.
Rwanda’s national HIV protocol is very advanced in some ways—1) D4T which causes many body habitus changes is no longer used. Instead, we use tenofovir which is the same first line drug recommended in the states 2) Patients now start ART when the CD4 reaches below 350, instead of waiting until the CD4 declines to 200, as is still done in many developing countries. However, monitoring is by CD4 cells and not viral loads, which we rely on in the states to more quickly detect failure. Presently, viral load tests which take many months to be processed; equipment has been purchased and soon each province will have the ability to run viral loads. Another serious problem is the lack of third line regimens (after first line with nevirapine, and second line with Kaletra). Fortunately there are not many resistant patients (far fewer than in the U.S), but there are patients who are not responding to second line therapy, We have advocated strongly for one patient and the government is trying to secure her medications. We have not been successful yet.
Finally, here’s an exciting and important new development in our program. We began screening women in the clinic for domestic violence last spring. The prevalence was very high—exactly what we find in women with and our matched high risk cohort without HIV in the U.S.–62%. The women of course required some intervention after we identified the problem, and we made referrals to the in-clinic psychiatric nurse, to our legal advocate, and to newly formed support groups. Quickly, the 3 support groups were filled to capacity and thus we were forced to stop the screening. These women, most of whom still live with their husbands talked about physical, sexual and emotional abuse. Women described their husbands abandoning them and withholding money for rent or food. Their husbands would refuse to go to the clinic but instead would take the patients antiretroviral medications to use themselves.
Some of the men were then invited to join a group to talk about these issues. Through the support groups the facilitators helped women better understand the cycle of violence and challenge cultural beliefs which find male violence tolerable. The women acquired negotiating skills that helped reduce abuse in their homes. Five of the men stopped using their partner’s medications and began attending HIV clinics to obtain their own antiretrovirals. Perhaps we have discovered an intervention that can reduce gender based violence and increase the number of men who attend HIV clinics. People often ask what WE-ACTx does for the men. In addition to all the indirect benefits of our services (and men make up one fifth of the adults attending our clinics with their family members), we can now point to these direct interventions which we hope to learn from and expand.
Hoping for more innovative productive interventions and the resources to support them! And peace in everyone’s home.
Mardge
Women's Equity in Access to Care & Treatment