Dear friends,
Preparing for sharing this update and local Rwandan stories, reminds me that while providing the support and respect each person needs to thrive is a country- and culturally-specific process , in other ways it is truly universal. Thus I hope you have all contacted your representatives in congress to vote for the single payer amendments (Rep. Weiner and Kucinich amendments to substitute single-payer legislation for the House leadership’s bill, H.R. 3200 and Sen. Sanders amendments to the Senate bill). This is an historic opportunity to show how much caring and support exists in our country for creating a health system where we truly care for each other. Single payer national health insurance activists are hoping to garner 100-150 votes on the floor of the House, which while expected to fall short of passing the amendment, will provide a huge expression of the groundswell for the health system people need and want, thereby addressing the cause of 45,000 deaths annually in the U.S. by lack of health insurance.
In Rwanda, reduced funding has had an impact on our work. The consolidation of the two WE-ACTx clinics (Icyczuzo and Centre-ville) I mentioned in my last letter has proceeded smoothly, although there were, unfortunately, some staff reductions. We were able to accommodate the increased number of patients in the Centre-ville Clinic by rehabbing the pharmacy and lab and expanding our medical records area. Pharmacy, lab and clinical appointments are now synchronized as much as possible. The Rwandan national protocol has just changed to require dispensing of Sulfa/Trimethoprim (prophylaxis for opportunistic infections) to all HIV infected persons, on and off antiretroviral therapy, regardless of their CD4 count. This will require many more visits for patients, as well as staff in our clinic and pharmacy. Even during this transition, of the 1300 active patients on antiretroviral therapy, only 2% missed picking up their monthly medications as scheduled. Adherence is excellent and the rise in CD4 cell counts attest to that (for example, for children <16 the median CD4 count for those on ARVs has more than doubled from 339 to 725). .
Last week I attended a meeting where the results of the first national study on post traumatic stress (PTSD) were presented. Over 25% of the general population country-wide have symptoms of PTSD, with higher rates among those who live south and east, or are widows and older than 35 years of age. Depressive symptoms were found in the majority of those with PTSD. This new data reflects our experience in WE-ACTx. We have also collaborated with nursing students at Kigali Health Institute to determine the impact of gender based violence, unrelated to and since the genocide, on the women in the clinic. We screened 382 patients during 2 months and found that 103 (27%) had experienced domestic violence just in the past year and 135 (35.3%) had experienced domestic violence prior to the past year. We have set up 2 support groups and legal counseling for these women and made referrals to the psychiatric nurse, psychologist and trauma counselors as needed. Currently there are 40 women who attend these support groups and access the legal services and individual counseling. The counseling staff feels like there have been some amazing therapeutic successes but they also feel overwhelmed by the numbers and extent of the problem.
Widow Isperciose making baskets for income
Another inspiring success story is that of the woman pictured in the photo here, whose name is Isperciose and has asked us to share her story. About 2-3 years ago, the WE-ACTx family team was particularly concerned about Isperciose. She was a widow who had HIV for many years. She had adopted 4 children who were orphaned when their mother died of AIDS. She was a basket maker who was relying on her landlady for supplies and selling the baskets, and she was only receiving a fraction of the profits. Irene, the WE-ACTx trauma counselor was very impressed with Isperciose’s attempt to raise money for herself and the children. The patient was started on antiretroviral therapy for HIV and provided counseling for her depression. One of her adopted children is also followed at the WE-ACTx clinic. The staff asked Dr. Mary Fabri, the Chicago psychologist who works with WE-ACTx (who by the way, just received the Hopi Foundation’s 2009 Barbara Chester Award for her work with survivors of torture!) to accompany them on a visit to Isperciose’s home. Mary gave her some support to buy her own weaving supplies. Soon Ispercoise was feeling better, making baskets and selling them herself in the market. Three months ago, the post partum support group at the WE-ACTx Nyacyonga clinic (made up of 20+ women who received mother to child transmission prevention while they were pregnant) voted to start an income generation project and asked the WE-ACTx trauma counselor Irene to facilitate. Irene contacted Ispecioze to teach the group how to weave the baskets. On the left you can some of that group. Since Rwanda has outlawed plastic bags, these baskets will have a local as well as an international market. Last week the Director of the Nyacyonga Clinic who facilitates the weekly support group on Saturday for older children with HIV and their mothers decided to offer basket making as an income generation program for the mothers in that group. She will ask one of the new expert basket makers to teach that class, providing a larger income for another patient.
Another wonderful development concerns the older youth followed in WE-ACTx. Three interns from Boston and NY ran a youth program this past summer for 45 WE-ACTx youth aged 15-22 who were on vacation from school. Back in the States before coming the interns raised over $7000 to fully fund the two month project (4 week camp and 4 week leadership training course). I am so impressed with the growth, self-confidence, and closeness of these new leaders. They now manage and supervise the entire Sunday support group for the WE-ACTx children ( >240 children), including play activities, distributing snacks, general health lessons and role modeling. Watching these teens become true youth peer advocates, inspires me about the potential for leaving behind a positive legacy arising from the problems we have come here to address. They will be helping to plan next summer’s camp, as well as be the counselors themselves for next summer’s group.
Rwanda is in the midst of many national initiatives: a campaign to teach all children in English (though there are few trained teachers to teach in English); the integration of mental health into primary care (though there are insufficient mental health providers); a new fiber optic cable which will greatly improve communications; greater stability within the area (though gender based violence continue at alarming rates in the Congo); the East Africa Economic Community agreement between Rwanda, Burundi, Kenya, Tanzania, Uganda to integrate the 5 countries politically and economically. But unemployment and poverty and the continued post genocide tensions still impact everything.
Providing quality primary HIV health care within this context is difficult, as it is in the clinics I’ve worked at in Chicago and Boston. WE-ACTx is contributing in a small way to improve the lives and well being of its patients. Many of you should have received a fundraiser letter for a matching fund to continue WE-ACTx services this year. I hope you will respond positively
Thank you,
Mardge
Women's Equity in Access to Care & Treatment