Tuesday, June 16, 2009

Message from Mardge

Dear friends and supporters,

Five years ago during a conversation with the Minister of Health of Rwanda, I was struck by the contrast of the matching socks, tie and handkerchief worn by this attentive physician, and our experience in the clinic where the women patients had no underpants. We budgeted money for underpants and added their distribution to the gynecology protocols for abnormal pap smears or exams.

It is now 2009, and Rwanda and WE-ACTx have changed significantly in these 5 years: over 1700 WE-ACTx patients take effective antiretroviral medications daily; 270 children with HIV play at our weekly WE-ACTx Sunday support group; Rwanda boasts that 70% of pregnant HIV infected women take prophylaxis to prevent HIV transmission (one of the highest rates in Africa where most countries have only 20% uptake of perinatal HIV prophylaxis). Many more streets are paved in Kigali and there are new muzungo restaurants serving middle eastern food. Yet, each week Anne Marie Bamukunde, the recently hired WE-ACTx psychiatric nurse appeals for funds for patients to buy underpants or some food prior to prescribing anti depressants for those referred to her.. She told me this week that in all her previous work in Rwanda she had never seen families with so many needs and vulnerabilities until she came to work at WE-ACTx. This is the refrain that we continue to hear, echoing Dr. Jonathan Mann’s words on human rights and social determinants of health from two decades ago “No matter how and in whom it starts, HIV always finds the most vulnerable in any country.”

But we are responding. On June 16, 2009, over 400 children with HIV and their families attended our 4th annual celebration of Day of the African Child (DAC) (commemoration of the 1976 child uprising in Soweto against apartheid). We were lucky to have volunteers helping us from Israel, Canada, and the U.S. The program included traditional dancing by the WE-ACTx dance troop, singing by WE-ACTx rock star Noah Mushimiyimana (http://www.apple.com/itunes/top-100/songs/noah-mushimiyimana/worlds-greatest-american-idol-charity-song/), speeches by local leaders and ministers and the U.S, ambassador to Rwanda. There was a large buffet lunch. Even though it took hours to serve everyone, no one really minded or wanted to go home afterwards. Our annual WE-ACTx celebration of this Africa-wide holiday was extensively covered in the local Rwandan media.

We also have seen growth of our monthly food supplement program (SOSOMA) for children on antiretroviral medications which now serves 169 children and their families. And thanks to some special donors, all these children also have fees and uniforms to attend school.

Our PMTCT (prevention of maternal to child transmission) program at Nyacyonga clinic is going well. Irene, the trauma counselor facilitates the weekly post partum group for women with HIV who have taken antiretroviral medications during pregnancy. Only one child in this group is infected. These women and families continue to need support. Here Irene is distributing children’s clothes sent by the family of one of our interns. Irene is also starting an income generation program with 30 of these mothers who have bonded together to deal with high food and transport prices. Epiphanie, the peer educator, seems stronger and more confident each time I come to visit. Here she is using the Kinyarwandan version of the HIV counseling and testing flipchart to explain the importance of getting tested for HIV during pregnancy and the best ways to prevent HIV and other sexually tramsmitted diseases. Some of you will remember when we first used this flip chart (in English) at Cook County Hospital and other hospitals in 1999.

We’ve made a major change related to the other 2 WE-ACTx clinics. We are consolidating the Icyuzuzo and Centre Ville Clinics into one clinic at Centre Ville with the conclusion of two large donor grants this year. This is really the first time we’ve had to cut back on WE-ACTx work in Kigali. It has been very difficult of course, as the association that housed the clinic will lose this activity. In terms of patient care, all patients will continue to receive at Center Ville, though it will be more crowded and space for some support groups will be lost. Some staff will lose their jobs, though most have found other related work based on the training and skills they have acquired working with WE-ACTx.

We have thought long and hard about this necessary consolidation. We realize that the Rwandan public health infrastructure is committed to providing antiretroviral medications to people with HIV here, so the emergency need we responded to 5 years ago has been somewhat eased. But we have learned that there is a major gap that still needs to be filled—providing a woman-, youth- and family-centered program which is particularly sensitive to and addresses the mental health concerns, psychosocial needs and other health problems facing Rwandans with HIV. This is the need we hope to continue to address at Centre Ville, with your continued help and support.

We are making interesting and valuable headway integrating psychosocial support and legal issues into our health care program. Working with Kigali Health Institute nursing school we have introduced a screening tool for domestic violence. We’re finding that nearly two thirds of women screen positive (unrelated to the genocide to domestic violence), reporting physical, sexual or emotional abuse. For many, this trauma has occurred in the past year. If a woman reports abuse she is referred to our weekly WE-ACTx support group which is staffed by our legal team, trauma counselors and peers. Some of the scenarios that the trauma counselors and legal team find most difficult are when women have nowhere else to go to escape the abusive relationship or if women are very ill they may decide they are too weak to leave and stay with their husband. Also, HIV stigma, fear, poverty and family difficulties all combine to challenge the property rights of women who are widowed, even if the laws might protect them. WE-ACTx is working with others in Rwanda to begin to address these aspects of gender based violence.

Each time I come to Rwanda I am impressed that the issues that led to the genocide—colonialism and the economic, political and racial tensions as Hutus and Tustis struggle to eek out a living on this tiny overpopulated bit of geography-- continue to bubble not far from the surface. Continuing WE-ACTx work here to address HIV in this wider context is extremely important and difficult. Of course I am also worried about our financial situation at this time. It is a very hard economic time, and seeing its impact trickle down to so many here, who had so little to start with, is devastating. But I am also in awe of the Rwandan staff’s commitment and kindness to forge ahead to ensure quality care and dignity and I am further moved by the many volunteers and supporters WE-ACTx has attracted. Right now, a group of Chicagoans are hosting 2 young women who will attend the Chicago Freedom School’s Leadership Development Program, an extension of last summer’s Girls’ Exchange. This summer, in Kigali, there are 2 phenomenal yoga instructors (from Finland and England), a Canadian computer helper, a Canadian public health student, and 3 U.S. volunteers working on a youth leadership and empowerment program for 40 young WE-ACTx patients. We’ve had visitors from the U.S. and Israel learning more about our work and assisting us. We all come away motivated to make a difference here. Hopefully we can draw on the reserve of energy, goodwill, volunteerism, innovative ideas, resources, and willingness to fight for real change on both sides of the world to see our way forward.


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