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Gender inequities in sexual risks among youth with HIV in Kigali, Rwanda

Understanding the experiences of youth living with HIV (YLH) is necessary for implementing interventions that mitigate HIV transmission. We conducted a survey of sexual behaviours and sources of knowledge among 107 youths aged 16-24 attending two HIV clinics in Kigali, Rwanda.

Read the entire article here: Gender Inequities in sexual risks among youth with HIV in Kigali, Rwanda

Exciting news!  Youth Ending Stigma (Y.E.S.), a youth group committed to ending stigma about HIV in Rwanda, started by WE-ACTx patients, has been named a finalist for the $25,000 Kalamazoo College Global Prize for Collaborative Social Justice Leadership.  Aime Ndorimana, one of the staff of WE-ACTx for Hope and member of Y.E.S. will be in Kalamazoo on May 10-11 to present this video presentation.

Dear friends,

I’m writing you this brief note during a short stay in Rwanda to tell you about two new exciting developments within WE-ACTx  in Rwanda.

The dedicated and enthusiastic WE-ACTx Rwandan staff continues to deliver extraordinarily respectful treatment to over 2300 patients with HIV. The HIV protocol in Rwanda starts patients on regimens similar to those used in the U.S. and  switches  to a second more potent regimen (with more pills and more expensive) if patients do not respond to this initial regimen.  Currently, about 5% of patients in the WE-ACTx clinics are resistant and not responding to their antiretroviral regimen.  However, unlike those in the U.S. who have access to third line (and more complex) regimens, our patients in Rwanda have had no alternative if the second line therapy was also unsuccessful at controlling the virus (determined by viral load, CD4 cell count, and worsening clinical symptoms).

I am excited to tell you, that a new pilot system  is now in place to enable these patients to begin third line therapy.  We have waited too long to have this available. So I am thrilled that WE-ACTx patients will now be able to receive this much needed treatment.  Global access to needed medications is a priority and is still an emergency to save lives. While Rwanda has many resources for first and second line, and is now opening the door to third line therapy, many patients in sub-Saharan Africa still are on waiting lists for first line. Continued struggles will be needed to see that that high drug company profits don’t result in unaffordable essential medicines, as well as to increase government will (in well resourced and poorly resourced countries).

The second exciting development is the launching of our 5 year study to improve adherence among youth in Rwanda.  The NIH NICHD-funded study will be conducted within the WE-ACTx and CHUK (public hospital) clinics. This picture was taken at our first team meeting.  You see me, Dr. Geri Donnenberg,(UIC) and Dr. Sabin Nsanzimana (RBC) (the 3 Principal Investigators), other co investigators and staff from WE-ACTx (including Chantal and Henriette who many  of you have met in Chicago and Boston), the Rwandan Biomedical Center (RBC), under the Minister of Health, and CHUK.  We have already accomplished a lot in getting the project launched and are motivated to complete all the needed preparation, logistics, approvals, piloting and identification and training of the indigenous youth leaders to enroll young participants in January.

Of course, these two developments are related, as adherence to medication regimens decreases resistance to antiretroviral treatment.  And having strong and healthy Rwandan youth is important to all of us. Again, thanks for all your continued support.

Mardge

Hope you can join us in Chicago on May 16 at Latin Middle School 6-8:30 to support WE-ACTx.  Tickets and information available at www.we-actx.org.  Also please check out our on line auction  www.biddingforgood.com/weactx

Dear friends:

Before I share my thoughts and news from this visit to the WE-ACTx project in Rwanda this month, I wanted to thank each and every one of you for your generous big and small end-of-year contributions to WE-ACTx. They all add up, to a sustained and (as you will read) continuously growing and expanded reach for our efforts here. Not only will these help support our essential activities but we have leveraged your support to accomplish several new special projects.

Soon after arriving in Kigali earlier this month, I joined the Sunday support group, held at St Famille School. For the past 5 months, Chris Nicholson, a music therapist from England, has been working with us for his Masters third year placement. Chris is an experienced musician and a total gem. He uses Music Therapy to provide an important expressive space for the youth and conducted 4 weekly sessions for a variety of groups of young patients. I hope you can see the drums, sticks, bells, tambourines, and other instruments used to explore what it feels like when the youngsters voices are not heard or feelings not acknowledged within groups. Chris discovered WE-ACTx through Musicians Without Borders, a group which has been working with WEACTX for the past several years providing music workshop trainings for our youth leaders .

The joy of the music was quickly arrested when, later that first week I learned that one of the peer leaders (L.) was being held at the Remera Police Station. I accompanied Aime, our youth peer advocate, to the jail to see L., who was held on charges of having an “illegal abortion.” While a new “liberalized” law passed last year allows women to go before a judge to “ask” for an abortion in cases of incest, rape, forced marriage or endangerment to mother or child, abortions are otherwise illegal and punishable with prison terms of 5 months – 6 years (previously 10-20 years!). We waited to speak to L. She was led out handcuffed, and though glad to see us, she soon broke down sobbing. She had gone to a neighborhood clinic after she started bleeding. Someone there accused her of having had an illegal abortion; the police were called and took her to the police hospital and then to the jail. L. is 23, had a child 2 years ago, and has been on birth control pills since then. She had no idea she was even pregnant (still not clear). We attempted to secure her release but it was impossible. The police stated they were awaiting the hospital report to determine whether she would be prosecuted. It looked like the hospital report would clear L., and she would be released the next day.

After another two days, we contacted a lawyer through friends/colleagues and he told L not to talk to the prosecutor without him. He discussed the case with the prosecutor to avoid having to go the court. The lawyer’s standard pretrial fee is $500 (an enormous sum of money here where people typically earn <$2/day). If a trial was scheduled, the price would go even higher. After attempting to bargain down the fee, I learned that this lawyer was actually an extraordinary outspoken advocate for women’s right to abortion in Rwanda. He stayed on this case and we paid the $500. But still additional days passed, and L. was still not released. After many conversations and delays, the lawyer told us the prosecutor was almost finished, he just needed to “check some facts with the community elders and neighbors,” as there were some problems between L’s family and the neighbors. What did this false accusation of getting an illegal abortion have to do with the neighbors I asked? And then the answer came, one that is often the answer when things don’t seem to make sense in Rwanda. Was it stigma from HIV? No, he said, it is the genocide. L.’s neighbors were retaliating because her family had given evidence against their family members who were imprisoned for crimes during the genocide. It took another few days, but after 13 days in jail, L. was finally free. We celebrated, but are sobered by the many issues this has raised. And the release came on the 40th anniversary of Roe v Wade!

L. is a member of the “young mothers” group, a weekly support group facilitated by our trauma counselors. As part of a newly funded initiative to address the many challenges faced by these women, we held a focus group and introduced the women to a visiting volunteer social worker spending the next 3 months with us in Kigali (her husband is a pediatric surgeon training residents at CHK, the public hospital in Kigali as part of the U.S. university training consortium). The young mothers group is comprised of 13-16 women ages19-27. They each have 1-2 children aged 1-13, and one is currently pregnant. Only one completed high school, most of the others stopped before the 9th grade, often when they had their babies. Several said their pregnancies followed rapes; and many were under 16 when they became new mothers. Only one has an infected child. All are single and very poor. One third have CD4 cell counts below 300 (meaning they are significantly immunocompromised). All have been prescribed antiretroviral therapy, though adherence is inconsistent. Some live with family members or rent rooms; but almost all feel like they don’t have a room of their own. Many of their families either do not know or else reject them because of their HIV status; other family members don’t believe they were actually raped (shades of Republican politician beliefs). Naturally they all want stable housing, the ability to pay their children’s school fees, and jobs. And we are working to help. During 2013, this group of young mothers will now have support and assistance to work together to problem solve, gain skills, help each other, and plan for a better future for themselves and their children.

I am pleased to report two new positive developments that we have achieved, making this a very exciting time for WE-ACTx.

First, our Rwandan colleagues have now completed the legal transition from being part of an international NGO to creating a new officially recognized organization–WE-ACTx for Hope. As an official local NGO partnering with WE-ACTx, WE-ACTx for Hope will manage the clinics, support services, and income generation projects. This will allow the local organization to solicit additional funds only available to local NGOs. Organizations like Australian Rotary (I met our dear Australian friends Sue O’neill and Graham Taylor in Sydney this past November!), which supports the nutritional supplement SOSOMA program, only donate to local NGOs and thus will be able to support our work. In addition to this potential financial benefit, this change allows us to better connect our work here to the local women’s associations and the government giving additional recognition, status, and (hopefully) sustainability to the program.

The Board of Directors of new WE-ACTx for Hope NGO is very strong, and is led by our long time friend Felicite Rwemarika (who some of you may have met in Chicago). The first all-staff meeting with the Board took place this week and contracts with raised salaries (lowered last year because of reduced funding) were announced.

The other big news is that the U.S. NIH Institute of Child Health and Development (NICHD) has awarded us a 5 year grant to conduct a randomized control trial to evaluate an intervention to improve adherence among HIV infected youth aged 14-21. We worked hard to write this grant, and had been hanging on a cliff (fiscally and figuratively) for the past few months, uncertain if we would actually receive the funding. The centerpiece of the project is the training of Indigenous youth leaders to conduct an enhanced trauma-informed CBT (cognitive behavioral therapy) intervention delivered via 8 weekly sessions with groups of 8-10 younger patients. It represents an innovative approach to address the serious challenges to medication adherence (depression, gender based violence, logistics and problem solving) in our patient population.

The research collaborative effort leadership includes Dr Sabin Nsanzimana, Head of the Rwanda Division of HIV/AIDS, STI, and Other Blood Borne Infections at the Rwandan Biomedical Center under the direction of the Ministry of Health, and Dr. Geri Donnenberg, who directs the Healthy Youth Program and the Community Outreach Intervention Project at University of Illinois at Chicago. Mary Fabri, the WE-ACTx Mental Health Director, will help design, implement and supervise the CBT intervention. This grant greatly strengthens WE-ACTx for Hope and facilitates our contribution to improving the health of young people with HIV in Kigali as well as develops, what we hope will be an international support and adherence model.

So as you can see, there is much to do to provide high quality comprehensive care to patients in WE-ACTx for Hope, and there will be no end to new crises. But the staff and patients are moving forward. l continue to learn and with the staff and colleagues here (and your continued support at home) will use all of the lessons from the past 9 years as we embark on these exciting new projects.

Thanks again,
Mardge

Dear friends,

Summer is an especially exciting time for the young patients at WE-ACTx here in Kigali. On June 16 we celebrated Day of the African Child (DAC). Over 800 children, youth and family came together to acknowledge how well these young folks who are living with HIV are doing. Everyone received a new green DAC t-shirt and holiday meal. Many children performed and danced and were given awards for school achievements. Rwandan musicians including Kim from the Rwandan Music School and super star rapper Young Grace entertained.

Music has become an integral part of healing and building strength among youth in WE-ACTx. Since the summer of 2010, volunteers from Musicians Without Borders have sponsored an exciting intensive training program for WE-ACTx youth leaders. (see http://www.newtimes.co.rw/news/index.php?i=15008&a=54189)  Musicians without Borders (MwB) is an international organization that uses the power of music to connect communities, bridge divides and heal the wounds of war and conflict. This year they sponsored two 2-week workshops and have scheduled a 3 week workshop for late July-August. The workshops focus on singing, voice training, drumming, songwriting and teaching for WE-ACTx peer parents who will lead Sunday support groups, camp groups and other groups in the future. Collaborating with MwB, and getting to know musicians Danny Felsteiner and Fabienne van Eck (from Israel), Joey Blake (from Boston) and Laura Hassler (from the Netherlands), has been very inspiring for all of us at WE-ACTx. MwB has also connected with local musicians at the Kigali Music School who now provide weekly trainings for WE-ACTx youth leaders. A celebration of this work was held in April for our patients and their families and was supported by the Dutch Embassy.

The WE-ACTx youth leaders are among 600 youth under 24 years of age seen for comprehensive HIV primary care in the 2 WE-ACTx clinics (downtown Kigali and the more rural public health center in Nyacyonga). We are extremely fortunate to have two new sources of funding for the nutrition and retention aspects of our youth program–from the Rotary Club of Kenthurst, Australia and the Boston based Robert F. Meagher Foundation. These only partially make up for the loss of the Ronald McDonald House Charity funds, but broaden our donor support base to include these and other new caring and interested groups.

WE-ACTx now follows 2,400 patients with HIV. As of July 2012, 70% of these patients are taking antiretroviral medications, which they begin (per Rwandan Ministry of Health protocol) when their CD4 cell count drops below 350 (reflecting suppression of their immune system). The current U.S. recommendation is to begin treatment earlier in the course of HIV, at a higher CD4 cell count of 500, before marked immune suppression, in order to reduce morbidity and mortality. Rwanda and most countries in sub Saharan Africa however are not able to afford this approach and they follow WHO recommendations to begin therapy at CD4 of 350.

Adherence to lifelong antiretroviral therapy is of course a serious challenge for all persons with HIV wherever they live. The Rwandan Ministry of Health now requires patients with HIV to be seen by a clinician every 3 months (increased from every 6 months) to promote better clinic retention. Patients get their medications monthly. About 85% of WE-ACTx patients in Kigali are doing well with improved and higher CD4 cell counts, returning for appointments regularly and tolerating their medication without too many side effects. This is an extraordinarily high retention rate and a reflection of the hard work of WE-ACTx staff and patients. About 10% of patients in WE-ACTx with CD4 counts < 350 but not on medications, have a difficult time overcoming obstacles and starting their antiretroviral therapy (coming late to care and being very symptomatic, poverty, stigma, fear of medication and side effects, incarceration, and unstable housing. And 10% of those on antiretroviral therapy need more help staying on their medications. One of my routine jobs here is to review our data base and identify those patients who need to be reached by phone (for a few), at monthly Trimthoprim medication pickups, or with home visits to begin medications or reinforce better medication adherence.

The best news is that no babies have been born with HIV at the Nyacyonga clinic (where we have our prevention-mother-to-child-transmission program) in the past 4 years. The Nyacypnga post-partum jewelry cooperative Ejo Hazaza (which means tomorrow) continues to thrive and is currently finishing a huge order of beaded bracelets for Indigo Africa. We currently have 4 children 2 – 4 years of age in Centreville Clinic, the youngest enrolled last month and was born to a mother who hadn’t been tested for HIV during her pregnancy Our hope is there soon will be no more young children joining the Sunday Qadaffi support group. But this achievable goal is running up against other storm clouds. For the last few months, the WE-ACTx clinic and every site within the Rwandan public sector have had few condoms to distribute. And even sadder is the report from 3 young girl patients under 12 that they were forced to have sex, reminding us again how very unfair and difficult their lives are and how much is needed to help them and to stop gender based violence.

This summer has seen a return of some of our veteran volunteers and supporters. Gia Marotta and Chloe Frankel, camp creators from 2009 are back (Gia hasn’t missed a year yet!). Ten students and 2 teachers from Latin High School in Chicago have raised over $18,000 to support the two summer camps in town and in Nyacyonga and will arrive in Kigali next week to visit and help staff the camp for the first week. This will be Latin’s third summer with us. Margot Moinester has returned for a third summer to concentrate on the income generation programs related to Manos de Madres.

And another group from the Evanston Jewish Reconstructionist Congregation (JRC) has returned (with 4 repeaters) to learn more about and help WE-ACTx. They brought 45 yoga mats for our children’s yoga program. Here’s Joseph, a youth leader who has been trained by our partner group “Project Air” and who loves to teach yoga. The children can’t get enough of his tricks and moves and are really excited about learning yoga, so the beautiful new mats were a big hit.

There is something very special about supporters coming back a second and third time. The commitment makes a difference to those who return and those who see them again. Pictured here is the completed new library (which began as a bat mitzvah project by one of the youngsters in the group) at the WE-ACTx clinic: The JRC crew painted, decorated and stocked it with books You can read more about their time in Rwanda on JRC Rabbi Brant Rosen’s blog (Rav Shalom http://rabbibrant.com/), from which I copied the yoga photo.

The political situation here is tense. At this moment there are reports of a troop buildup in Goma though most people are not talking about it. The recently released UN report claims that the Rwandan government is backing the rebels in the Eastern part of the Congo. These claims are being denied by President Kagame. The NY Times and other media in the states are expressing concerned about continued political repression in Rwanda and Rwanda’s continued presence in the devastating and prolonged war in the Congo.

Yet some prospects for progress and international cooperation continue to look good.  Next week several of us will be leaving Kigali to attend the International AIDS meeting and represent our project in Washington DC.  Chantal. WE-ACTx clinical coordinator and Henriette, Youth Program Leader, will present a number of posters that have been accepted for presentation at this meeting. We are looking forward to sharing our work with others caring for people with HIV all over the world. Just as HIV knows no borders, we find it hard (and not really desirable) to compartmentalize the different aspects of our work in Rwanda. We are hopeful that better health, HIV drug treatment, our preventive efforts, along with addressing gender based violence and empowering young people will make a difference.

Thanks again for all your continued support.

Mardge

Dear all: This trip, my daughter, Davida, was in Kigali for the first time, on a fourth year medical school elective. Too exciting! Here’s the report through her eyes:

For the past several years I – and I imagine many of you—have come to expect my mom’s periodic “Kigali report.” It’s hard to believe that I am now in Rwanda, for the first time meeting the people in the pictures and putting faces to the stories we have read, beginning to understand the triumphs and continued challenges of caring for women and children with HIV at WE-ACTx. It feels incredibly special to be here with her this month and to share some of my experiences and reflections with you.

The week before I joined my mom here, there was a meeting of HIV+ youth on second-line antiretroviral therapy. This regimen has more pills and more side effects than the simpler first line regimen. The young adults discussed the challenges of accepting second-line therapy and the obstacles to taking their medications each day. They brainstormed ways to conceal pills in envelopes and find private spaces to take their morning medications at school. They highlighted the need to be able to contact a health care provider outside of school hours to reduce stigma from repeatedly missing class. The group plans to continue meeting together to think of solutions to their shared struggles, starting with designing an alternative pill box that won’t rattle in their bags disclosing their disease.

The WE-ACTx house is full and everyone is busy working on a variety of exciting projects at all hours. Late into the evening, Mary Fabri and Mardge have been furiously grant writing, submitting abstracts, and writing letters for scholarships for WE-ACTx staff to attend the International AIDS conference being held in Washington DC this July. One large grant proposal is aimed at improving adherence among youth in Rwanda by addressing gender-based violence and depression using a trauma-informed cognitive-behavior (CBT) intervention. Cori, a social work student from Chicago has been working with Mary to further develop the CBT program. Noam (Israeli Brandeis graduate who has a fellowship supporting her stay in Rwanda this year) has been busy preparing for a week-long music training with Musicians without Borders (more below). Emily, a Peace Corps volunteer, is in her final few months of service, partnering with Henriette to coordinate the youth program. She is collaborating with a new Peace Corps volunteer (Kim Baskin from Chicago) who is working near the Nyacyonga WE-ACTx clinic site to help grow the income generation project there.

I’m told that Kigali has changed drastically since 2004 when my mom made her first trip. Perhaps the only constant is the birds chirping outside starting around 5:45, more reliable than any alarm clock. Today the city is abuzz with construction projects everywhere—roads are being paved and sidewalks laid, several tall skyscrapers now stick out from the city center, and dozens of new shiny glass hotels are being built. A European coffee chain has opened up multiple shops. But the current frenzy of development also highlights the contradictions of who has access to these resources. Just a few steps away from the main road and in the neighborhoods outside the downtown where WE-ACTx patients live, there is still a maze of rocky dirt roads without electricity that leads to tightly packed single room homes where malnutrition remains the biggest barrier to adhering to ART medications.

A block away from a five-star hotel where foreigners lounge beside a landscaped pool is the public teaching hospital in Kigali, CHUK, where I have been spending time in the pediatric ward. The ward is a connected block of 8 different rooms, with 12 beds in each room. Mothers and children and often siblings share a bed, with your neighbor about an arms distance away. The first week I was in the “oxygen” room, filled mainly with infants born with congenital anomalies, which if diagnosed prenatally on ultrasound in the U.S., would be surgically corrected within the first few days of life. These patients were weeks to months old, receiving oxygen as their only therapy, as they waited for a surgeon from the private hospital to consult on their cases. It’s extremely difficult to stomach the huge gap in access to resources and treatment here— from the one available blood pressure cuff, too large for every malnourished child in the ward, to poor access to timely life-saving surgeries.

How to best utilize limited resources is a constant discussion, whether at CHUK or at the WE-ACTx clinic, where staff may have to take a 20% pay cut to help keep the daily operations afloat due to the loss of a significant source of funding earlier this year. The cuts are needed to maintain the clinical and psychosocial support services for the program’s 2,500 patients.

One of the important programs is training peer-parents, HIV-infected youth who are selected to facilitate support groups and serve as role models for the younger children. On Sunday I met Dossa, a 23-year old who translated for me (English is one of eight languages he speaks) at the weekly support session. He told me: “I love Dr. Mardge more than I love my family. When I found out I was infected my family wanted nothing to do with me and I thought my life had ended, but through WE-ACTx the pain has disappeared and I can feel proud. I am a peer-parent to help those the way WE-ACTx helped me.”

This week, Dossa and the other peer-parents are participating in a music leadership workshop led by Joey Blake from Boston and Otto de Jong from Holland, both with Musicians without Borders. For four hours each day, after a busy day at work or school, WE-ACTx youth leaders dance, sing, and learn exercises that they will take back to their support sessions with the younger children. I’m amazed how quickly they picked up the lyrics of the American folk songs while I’m still struggling with the proper pronunciation of the five Kinyarwandan words I know. Joey and Otto have met with Rwandan musicians and even the Ambassador from Holland to develop an ongoing partnership to continue this work.

There are so many things to be hopeful about particularly while watching the creativity of the peer-parents through song and dance. Last week, we visited my mom’s friend, Felicite, who previously coordinated the research efforts at WE-ACTx, and met her daughter and new grandson. Shown here, are five generations, an inspiring picture of continuity and pride. I am moved thinking about my mother’s commitment to continuing this work, and about how families and friends are so important to making a difference. Thank you all for making it possible for my mother to show off this amazing program and country this month, and for your continued support.

Dear friends,

Very busy summer in Kigali for WE-ACTx as usual. Our house is bustling with young volunteers, scores of visitors, preparations for new holiday children’s camp in Nyacyonga (the more rural WE-ACTx clinic), counselor training for the new 1 week Nyacyonga and 3 week Centreville youth camps, juggling new income generation programs, preparing youth specific HIV educational brochures, and the upcoming work trip by 11 Latin high school students (4 are returnees!) and their 2 chaperones. While our house hasn’t changed much over the 7 years we have been working here, much has in Kigali—more paved roads, more high rises and tourist type malls, more Asian ex-pat restaurants, more patients with cell phones, international film festivals, and greater English facility by our younger patients.

We’ve divided up the youth programs: so children under 12 still gather and play at the Qadaffi Mosque Sunday afternoons, but older youth now meet earlier at a different site in a school associated with St Famille Church, near downtown. During the genocide, hundreds of Tutsis were murdered in this church, the largest in Rwanda. On April 15, 1994, many Tutsis who had sought refuge in the Church were turned over to the Interahamwe militia by the Church’s priest. In this picture, you can see the road we walk down to get to the school at the lower right. Contrast this with the large Kigali City Tower in the back on the right, a soon to be opened new tourist mall. On the left, the other skyscraper is the National Social Security building.

Though it is almost impossible for me to scramble down the steep hill and stay upright, over 170 young people manage to and meet each Sunday with their “family groups.” They discuss the week’s challenges the first hour, then join with others for a larger general discussion. Activities follow and then a snack and distribution of transport money. Here the yoga teacher volunteers have brought hoola hoops–clearly a huge success. We plan to continue our efforts to increase adherence and autonomy among these youth—one of the most challenging and rewarding parts of our program

We have exciting news on the income generation front. Ineza continues to thrive and improve on the quality of their beautiful products that many of you have purchased (and remember, we are always looking for folks to host a house party to learn about WE-ACTx and give these crafts for donations). But now, in addition, there is a jewelry making collective at Nyacyonga (called Ejo Hazaza and made up of women who went through the WE-ACTx’s perinatal program to prevent HIV transmission to their infants) and a silk-screening group (called Dutete, made up of women from many WE-ACTx support groups), and the group of vocational school students studying tailoring who will start their internship under Ineza’s tutelage in October. With the help of Emily, our incredible Peace Corps Volunteer, we expect a coming together of all these efforts as Hjo Hazaza’s jewelry are packaged in bags made by the students under Ineza’s direction, with silkscreened labels by Dutete’s members. We also thank Susan Moinester from Manos de Madres, Abraham Kong’A, a Kigali artist, store-owner, and teacher, and Helen from Kenya who built the kiln out of a trunk and taught the women in Hjo Hazaza to make beads and create designs out of recycled glass, for their help in starting these exciting efforts.

In the clinic, we continue to work on antiretroviral adherence and follow up. We are particularly concerned about the youth who are on second line therapy and still have so much trouble with adherhence. At the quarterly association meeting last week, leaders told us that many members are finding it too difficult economically to stay in Kigali and are moving out of the city and may stop coming to the clinic for their medications. This year we are prioritizing helping parents inform their children aged 8-12 with HIV of their HIV status, which is the protocol in Rwanda.. This is a very difficult issue for families everywhere. Of course, preventing HIV transmission from mothers to infants will eliminate this problem worldwide, and Rwanda is doing well with its perinatal HIV programs. HIV counseling and testing and antiretroviral therapy is accessed by a high percentage of Rwandan pregnant women. The Rwandan protocol also includes breast feeding until 2 years of age and administration of antiretroviral prophylaxis to all children born to HIV infected women to prevent any post partum infections..

Of the 150 children in WE-ACTx aged 8-12, only half have been told that they are infected by their parents. Some parents tell the children the medications are vitamins or to help them grow. Many parents feel guilty, or do not want to face their children’s questions and anger when they tell them that they are living with HIV. Some feel the children will tell others and that the whole family will suffer from stigma. We have started a Friday morning disclosure support group for mothers to talk with each other and WE-ACTx counselors about the best strategies for disclosing to their children. This past week, 33 mothers attended, and 1/3 had not yet told their children. They learn from mothers who have shared the news with their children and receive support as needed from the counselors. Some of the children knew their status before their parents get around to telling them. The children in this age group attend our Qadaffi support group every Sunday afternoon. It is a time to be free to sing, dance, run and play, and be the precious children they are.

Where next? Obviously sustaining our core activities remains our highest priority. We have written grants for an innovative youth adherence program using peer led support and CBT and telephone text messaging for medication and appointment reminders. We are excited that the Rwandan government’s TRAC clinic is partnering with us on this proposal. Personally, I am awed at the way new needs and innovative solutions continue to arise from our staff and patients. It is the thirtieth year since HIV was first reported and we are still figuring out the connections of passion, science, and advocacy Thanks for being part of this journey with us.

Mardge

With Egypt, Tunisia, Jordan and Yemen witnessing earth-shattering changes, and major U.S. cities overwhelmed with snow and budget cuts, I am spending the month in Kigali working with WE-ACTx. Obsessing on the day-to-day problems here feels at times far removed from these major upheavals. But I also sense that there are many small and big ways these global events and struggles for freedom, respect, equity and justice, are intimately related to our small project here in Rwanda.

Pictured at the left are the WE-ACTx “peer parents.” They are a special group of WE-ACTx patients, many of whom have participated in youth leadership training. Some were counselors in last summer’s week camp program or lead younger children in games and sports during the Sunday afternoon support group at the mosque whose open space serves as our weekly congregating venue for younger HIV infected But now they are playing a new role as the leaders of WE-ACTx youth program. Youth Coordinator Henriette Byabagamba has trained them to provide family-like support to WE-ACTx patients age 12-19. Each Sunday these youngsters gather at a school called St. Famille, near downtown Kigali. St Famille has many classrooms and a large yard for soccer and other sports. During the first hour, 2 peer parents lead their group of 10-15 youth and discuss the week’s events, about school, their families and coping with their HIV, especially discussing taking their Trimethoprim/Sulfa or Bactrim (prophylaxis to prevent pneumonia and other infections) and antiretrovrials (ARVs) to fight the virus. Then the “families” join with others to form 3 larger groups and continue the discussions, emphasizing the good ideas that came up within the smaller groups. The youth then have activities including yoga, dance and soccer. Finally they all come back together, take a (somewhat) nutritious snack and receive transport money to get home.

The older youth (20-25 years old) who are not peer parents participate in a support group for out-of-school youth led by Irene, one of WE-ACTx’s senior trauma counselors. They share their (often closeted) stories about being, in many cases, orphans, having their education disrupted during the genocide, not completing primary school, or having young children of their own and desperately needing to be working. We are especially excited that our wonderful friend and supporter Susan Moinester has started The Sylvia Feder Youth Vocational Training Program of WE-ACTx, in memory of her mother-in-law, to address some of the needs of this older group. The Vocational Program will support a two year cycle: during the first year, the program will provide tuition for the year long “tailoring” curriculum, including the required school uniforms and supplies, and food and transport; the second year, support will include start up equipment, and food and transport to help ensure the group’s new association gets underway. We will continue this cycle as the WE-ACTx counselors identify more young people who may benefit from this program. We are hoping this program appeals to donors so we can continue it as a legacy to Sylvia Feder and make a giant impact on these young people’s future.

We have designated Wednesday as Youth Clinic Day in order to organize the clinic scheduling so most of the children and older youth are seen on Wednesdays—and to make sure that day is especially youth friendly and has youth-oriented activities to meet their special needs. WE-ACTx staff conducted focus groups with young patients to find out what worked best about the clinic and what needed changing, as well as exploring the challenging issues around taking their antiretroviral mediations. What we learned is quite gripping. They appreciate the doctors and nurses and counselors and having attention. And it was their suggestion to have one day just for children and youth, so groups could share their experiences with each other. And while some felt that their medications were helping them, others stated they didn’t like having to take the medications every day or the idea of having to take medication until they died. They didn’t want to think about their HIV every day.

At the clinic debriefing this week, staff discussed some of the more challenging patients: a 14 year old who complained of having trouble taking his prophylaxis medication and getting his T cells drawn (usually done every 3 or 6 months) and described a difficult time at his home with lots of responsibilities and a troubled relationship with his mother; a17 year old currently was taking second line therapy (after the initial medication regimen was not effective) with excellent adherence and undetectable viral load; another 17 year old who does not want to return to his guardian who he has lived with since he was four, but who now mistreats him; an 8 year old who has to start ARVs but whose grandmother can‘t read and has no watch despite wanting to help the child take her medications; an 18 year old with a low T cell count who is not taking her ARVs and who no longer wants to come to clinic,having moved in with other girls who work as sex workers; and a 16 year old in the last year of primary school, who lives in an orphanage and is refusing to take her prophylaxis.

Adhering to HIV medications is, of course, difficult for everyone and especially for young people, in every country. The WE-ACTx trauma counselors, psychologists and psychiatric nurse do a remarkable job of working with the nurses and doctors to encourage better understanding of HIV and antiretroviral medications, provide adherence aids, work with peers and support groups and continue to find the ways that work best here in Rwanda. Every day we have breakthroughs both pushing the boundaries of discovery of new problems coupled with ever more creative and supportive ways to work to overcome them.

While our patients presently have an adequate supply of medications, the same can not be said of food. Nutrition remains a serious problem; even the older youth have high levels of malnourishment. We provide food at all youth support groups and snacks during the Wednesday clinic youth day, but cannot afford these at the adult support groups. This seven year old girl was new to the Sunday support play group for those under 12 years of age which is still held at the Qadaffi Mosque space. She told us she usually doesn’t eat breakfast and we learned she hadn’t eaten for the preceding 2 days. After this banana and some milk she joined her group for games.

I am always moved by the ability and commitment of the WE-ACTx staff to think of new ways to meet the needs of the patients. But sometimes the staff have problems as well. During December, one of our peer advocates was very ill. At first she was diagnosed with malaria, but then she was found to have tuberculosis meningitis. Alice was in a coma for several days, but upon starting treatment she woke up and is now recovering. She is now able to walk with a walker and getting stronger. Alice had told me many stories about Rwanda, the genocide and the political situation these days. She’s a great storyteller. She was a soldier in 1990 with the RPF, one of just a few women soldiers who lived in the mountains in the northwest part of the country with the army. So, she is a definite fighter. She is sharp as can be now, though recovery will take quite a while. When I showed her the pictures of the peer parents she declared “ah, the youth leaders, the future of Rwanda!’’

My month here has been especially fun and rewarding as Linda Mellis and Mary Fabri have been here teaching two week long classes on trauma informed cognitive based therapy. Mary has been working on this Rwandan specific adaptation of this curriculum for quite some time. The culmination of that work will be training 36 trainers to use and train others to use this important approach to reduce symptoms of depression and PTSD. . Here, Linda took a picture when we visited our long time friend Felicite (WE-ACTx former research coordinator and Girls Exchange Leader and Rwandan women’s soccer league founder) and her daughter Queenie. Sassy women can make a big difference.

Thanking you for your continued support for WE-ACTx,

Mardge

Dear friends

As we followed the election tensions in Rwanda including the arrests, grenades and murders over the past few months, I worried how things would feel when I returned to Kigali this summer. We were especially concerned, bringing over 8 Chicago high school students. However, for the past few weeks the city has been quiet except for major campaigning by Paul Kagame and his party. The opposing candidates who have been allowed to stay in the race seem to be there more for show than as outspoken opponents. Kagame is expected to be re-elected on August 9 by an overwhelming landslide. Every day there are loud bullhorns and trucks with music, rallies, posters and banners, and hat and T shirt distribution to support Kagame and the RPF. There is much to contemplate and discuss about the political situation here and the challenges it raises both internally and externally. But that is best done in face to face discussions and in the future. For now, I’d like to update you on WE-ACTx work which in so many ways depends on you.

One of the most exciting WE-ACTx activities this summer has been our second annual camp for youth on vacation from school. Fifty 12- and 13-year old patients with HIV who we follow in the WE-ACTx clinic are the campers. Nine Rwandan peer youth leaders (17-24 year olds trained last summer and this year by U.S. volunteers and 2 of whom participated in the WE-ACTx Girls Exchange in Chicago in 2008) are the senior counselors. And eight Chicago Latin High School students raised the $10,000 needed to run the camp, came to Rwanda for 2 weeks and acted as junior counselors for the first week of camp. They were accompanied by their teacher Ingrid Dorer and WE-ACTx Chicago coordinator Linda Mellis. The camp was planned and coordinated by Gia Marotta and Noam Shuster (who also spent last summer in Kigali), with help from Sophie Cohen. Friends of WE-ACTx had connected us with a team from Musicians without Borders (Fabienne van Eck and Danny Felsteiner, from Holland and Israel) who complement this amazing group of energetic and conscientious volunteer staff. Campers gather from 8 AM – 3 PM, receive daily transportation support, a full lunch meal and water bottles. The music, dance, soccer, theatre and art activities are very well organized and fun, but the bonding and sharing and joy is palpable and contagious. This week’s field trip was a safari to Akagera Park, a first for the Rwandan kids.

Rwandan HIV protocol recommends that all children with HIV be informed of their HIV status by age 8-12, with attention to individual emotional development. The WE-ACTx campers know they are HIV infected, but not one had told any of their friends at school about having HIV. Half have lost one or both parents to HIV. It’s a heartwarming thrill to see these children enjoying themselves, especially since they rarely get a chance to play so freely. But it’s also particularly exciting to think about the synergy of all the global forces that helped make the WE-ACTx camp so special and meaningful for all the campers and staff this summer. The motivation of the Rwandan youth peer leaders is growing daily, and that will continue to inspire the U.S. high school students. Many are insisting they will be back and continue their support. Latin High School has made a commitment to support the camp next summer as well. And the campers are gaining confidence without hiding their HIV status which will be important when they return to school and as they continue to cope with their HIV infection.

The WE-ACTx clinics currently follow 3880 persons with HIV, including over 600 youth. At Centreville, where we care for 3300 patients, the adult women have more advanced HIV, with 43% on antiretroviral therapy (ART) compared to 25% of the adult men. Of the ~1200 adults on ART, 25 are on second line therapy (i.e resistant to first line, more affordable drugs). Attendance rates coming to the clinic and picking up monthly ART treatment and CD4 cell counts tests show exceptionally good adherence compared to international and U.S. benchmarks. We have noticed, however, that older youth 17-22 have difficulty reducing high-risk behaviors and adhering to clinic visits and their medication (this is a problem in the states as well!). Our recent efforts to seek resources to increase youth friendly and enhance girl-specific treatment interventions are to address this difficult challenge.

This summer a graduate pubic health student from Brown University conducted an evaluation of our support groups and found that of 157 women attending WE-ACTx support groups, >85% came weekly. Since joining the support groups, 90% of the women reported disclosing their HIV status to their partner or child and 50% noted a more consistent approach to taking ART. The weekly groups provide an important support system for these women — more than 89% reported feeling less sad and lonely since joining the support groups.

When asked for additional suggestions, the women asked for income generation training to be part of the groups. These women are part of a new group learning how to make cloth beads. The patients praised the counselors who facilitate their support groups for helping them to better understand HIV, feel stronger and more confident and adhere to their medication.

The staff of WE-ACTx deserves enormous credit for all of our successes. There has been very little turnover among the extremely committed and hard working providers: nurses, counselors, doctors, peers and others. I sense that the staff has learned so much from the patients in addition to the patients feeling supported by staff—the way it should always be.

We were also gratified (and quite a bit relieved considering how precarious our next two years budget/shortfall looked) to learn last week that it is likely we will receive another round of funding from the Ronald McDonald House Chartity foundation. Although we are still awaiting the official announcement, this is an enormous show of support for the youth and other programs. It is especially meaningful because the Foundation will allow us to try innovative peer programs for the most vulnerable youth in our program.

But a sad story to end on. These stories invariably seem to arise each time I start to put one of these letters to bed, and obviously remind us why we are here, and how our continuing work is so needed. Yesterday, I visited the home of one of the women in the WE-ACTx Ineza sewing collective. She had been traumatized during the genocide, became infected with HIV, and was deserted by her husband. But she had been gaining strength and doing well. She finished her schooling and obtained a driver’s chauffer license. She was also, inspired by our yoga volunteer program, training to be one of the Rwandan yoga teachers. Sadly, she was hurt badly in a moto (popular motorcycle taxis) accident and required an above the knee amputation 2 months ago. Since then, she has had to send her 11 year old daughter to her mother in a rural area as she was unable to care for the child herself. She is very depressed about losing her leg, and is finding it very difficult to make her clinical appointments. She eats poorly and just recovered from a bout of malaria. It was a hard visit, but we encouraged her to use her confidence and strength to overcome this tragedy and of course we will seek to provide needed resources for medical and living expenses. It seems so unfair that one person should have so much to deal with. But of course road traffic deaths and injuries are common and increasing in developing countries (and are predicted to surpass HIV/AIDS by 2020 as a burden of death and disability) that it should not be surprising that she would have to face this next challenge. Not surprising, but not fair—leaving much work to be done on many fronts.

Mardge

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.

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.

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

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, 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.

Mardge

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.

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

It’s been 6 months since I was in Kigali (a herniated disc got in the way of a scheduled trip last October). There are some noticeable changes. Houses (and the people who used to live in them) have been cleared from certain areas to build hotels and more expensive housing. Too many cars are leaving the air visibly smoggy. Food costs have doubled and families struggle to eat one solid meal a day. In terms of the military situation with the Congo, our friends here say that they feel safer knowing there is more stability and control of the situation, with Rwandan soldiers there, but it is costly. When asked about members of the Hutu Interhamwe militia returning from the Congo to Rwanda now and going unpunished, they say they have been living with this kind of situation all along. Some say that in their minds they trust the soldiers will keep things safe, but in their hearts they feel uncertain and anxious.

The WE-ACTx house was bustling when I arrived a couple of weeks ago with volunteers, interns, and colleagues working on many different projects—cervical cancer prevention, yoga, Cognitive Behavior Therapy training to name a few. A crew of gynecologists from Montefiore was training nurses to perform VIA (visualization, inspection with acetic acid). This is a low tech screening method for detecting cervical abnormalities and then treating on the spot with cryotherapy. WE-ACTx became interested in cervical cancer prevention years ago as we saw that Rwandan women were unscreened (no Pap smears were available then) and cervical cancer was the major cause of cancer death in women. Women with HIV also have a greater likelihood of cervical dysplasia. Watching the intensive hands-on training (first with plastic models, then with patients under close supervision) and the graduation ceremony was really incredible. Now 17 nurses have been trained in cervical cancer prevention and efforts to bring a full program here are continuing.

Rwanda reports that over 60% of those needing antiretroviral medications (ARVs) are on them. This is amazing and much higher than most of the rest of sub-Sahara Africa, where uptake of ARVs is reported at ~ 25% (due to poor government will, stigma, discrimination, poverty, lack of available clinics and drugs, gender based violence, etc).

Yet, even with ARVs available for many in Rwanda, we find many obstacles. One 15 year old on ARVs in our clinic is about to start a secondary boarding school (with funds through a WE-ACTx program). He told the peer advocate that he doesn’t know how to bring and take his ARVs and still keep his HIV infection hidden from others. There is no school policy in Rwanda about who should be informed of students’ HIV status. The WE-ACTx trauma counselor then helped him find someone at the school to confide in, and to communicate with about future issues. Some students tell of making up stories about having other diseases to explain why they take medicines, so fellow students won’t find out they are HIV+. Interestingly, when WE-ACTx began the Family Program, few children were on ARVs, and fewer still were in high school. Now, children are doing so well on their medications, there is a demand (which WeACTx is trying to meet) for us to use some of our resources for school fees. If cases of discrimination and stigmatization arise among students from WE-ACTx, our legal program pursues various means to protect the youth.

Also on the mostly-good-but-of-course-complicated-news front, is the mothers group at Nyacyonga clinic. Here 22 post partum women meet every 2 weeks with a WE-ACTx counselor to support each other; one remarkable need they must grapple with is how to deal with nursing these infants. They have all taken ARVs during their pregnancies and all have uninfected infants. Current recommendations here are for exclusive breast feeding up to 6 months (unless complete provision of formula feeding is feasible). Finding enough food for continued growth and development of the children after 6 months is not easy for these mothers and this has become part of the agenda of the support group as well.

A year ago, we began the Sosoma (combination of soy, sorghum and maize mixed with sugar and water) Program for all children on ARVs. WE-ACTx staff distributes enough daily porridge supplement for the child and 5 members of the family each month. Staff record the child’s weight and height from that month’s clinic visit for each registered child. About 120 children from 2-19 have gotten at least two months of Sosoma. Over 70% of them have gained weight. Another 20% have not gained weight, but some have gained height, and some have stable weights appropriate for their age (for example, some in the 17-19 age group). When we examined more closely the few who have lost weight, we found the majority were older youth who were doing well, and had minimal weight changes. Those younger children still losing weight were found to have tuberculosis (recently started on treatment) or had family psychosocial problems including alcoholism and abuse. TB, family discord, and using Sosoma as full nutritional support or for more than 6 people (food costs are so high here) are issues that require continued attention.

Our volunteer Yoga program has gotten off to a great start with yoga teachers scheduled through most of this year. Here, you can see Eunice Laurel with the children from the Sunday support group totally engaged. The children and INEZA sewing collective are particular avid yoga fans. Having support from our volunteers and all of you at such a difficult economic time is especially appreciated.

Thanks again,

Mardge

This WE-ACTx trip has been filled with incredible sadness and terrific excitement. Two of the WE-ACTx staff (Claudine, a 19 year old peer and data enterer, about to start at the university and Chantel, a 29 year old nurse pharmacist, mother of 3) were killed in a horrific bus accident caused by a UN truck coming from the Congo in the western part of the country. The suddenness and great loss has been overwhelming and shocking for the families and the entire staff. There has been tremendous bonding and caring and support among the WE-ACTx staff and for the families, but it all seems so unfair.

On the 2 1/2 hour journey to Gisenyi for the ceremony concluding the 8 day mourning period, I was struck again by the beauty of the countryside, in such sharp contrast to Kigali’s increasing congestion by international NGO’s fuel guzzling SUVs (not WE- ACTx!). But I was most moved by the commitment of the staff for their departed friend and co-worker’s family. As for the grieving families, they kept their anger hidden and relied on strong religious feelings in accepting the tragedy.

Even in death the genocide still lives on. Claudine was the daughter of a wealthy Hutu man who had taken a second wife (Tutsi) as was the custom apparently decades ago to show how wealthy and powerful you were. When her father died, the property all went to his first wife (Hutu), and Claudine’s family had nothing. Claudine’s mother has suffered in many ways. Now, though, the law allows the children in these situations to share the property of their father, and that was beginning to happen before this tragedy.

Though the loss has affected everyone (staff and patients) deeply, especially at the Centre Ville clinic where both Claudine and Chantel worked every day, it has been particularly hard for the young people in our program. Claudine, a super star fluent in English, French, Swahili, and Kinyarwanda and always ready to take on every next challenge, taught the Sunday morning computer classes and helped the younger children at Sunday support group. She was to be part of the Rwandan Girls Exchange Chicago ßà Kigali, one of the 6 Rwandan girls picked to travel back to the states with the 6 Chicago girls and 2 leaders who will arrive in Kigali Sunday, July 20 (http://weactrwanda.blogspot.com/ is the girls blog which has early mural pictures & this url is a pre trip newspaper article http://www.suntimes.com/lifestyles/health/1035047,CST-NWS-rwanda02.article). The 5 remaining Rwandan girls are so sad, but committed to growing strong and proud as they travel with the Chicago girls. The group will make a phenomenal mosaic mural for the CORE Center in Chicago and the Nyacyonga Health Center in Kigali and dedicate it to Claudine.

This is the month for Chicago visits to WE-ACTx. Twenty-four people from the Jewish Reconstructionist Congregation (JRC) visited Rwanda and WE-ACTx this past week. The JRC group has been extremely generous to WE-ACTx for years, and this trip allowed them to see first hand many of the programs and people they have supported. Armed with Kinzer’s new book “A Thousand Hills” and many ideas, questions, desires to work and help, and more support, they visited each of the WE-ACTx clinics. They said Kaddish at the Genocide Memorial and at a Church site of genocide in Nyamata. They saw the recent improvements in Nyacyonga Health Center’s maternal and child health section with a more coordinated approach to prenatal, birthing and post partum units.

They brought 30 growing boxes and trained 10 partner associations to use the system for planting tomatoes and cabbages. They heard how men in the men’s support group have started growing mushrooms for income generation. Some took side trips to learn more about Rwandan agricultural challenges. They listened to Rwandan partner association leaders and patients talk about the high costs of fuel, food, and life. They went on home visits, bringing  much needed food packages, and did yoga with the Ineza Sewing Collective. They thought about reconstructing an entire society after the genocide.

The youngest members of the group spent time helping in the pharmacy and getting to know the young Rwandans in the computer class and the Girls Exchange. They brought many new activities to the Sunday Support Group. The entire contingent was a dynamic group and WE-ACTx staff and patients warmly welcomed them. Some WE-ACTx staff had spoken at JRC during a Chicago trip, so friendships were recharged, and new ones were made. Everyone here in Kigali was very moved by their commitment and empathy.

We hope the trip measured up equally well for the JRC group. Murakoze cyane, cyane.  We are seeing definite improvements among the children with HIV on antiretroviral medications (ARVs) . Last year 58 children were hospitalized, this year there were 13 (most for malnutrition, TB and malaria). With the Sosoma nutritional program, children are gaining weight and doing much better on ARVs. The Sosoma supplemental program costs $16,000/year for 100 children and their families each year. Yet, when the JRC group went on their site visits they learned that some of these families with children on ARVs and on Sosoma had other problems. A young girl came home during the visit and said that report cards had been distributed. When they asked to see hers, she started crying and shared that because her mother hadn’t paid the school fees, they hadn’t let her have her report card.

Upon investigation, it turns out that the 100 children on ARVs and Sosoma are all in primary school, even those around 15 years of age. The Rwandan government has declared that primary schools are now free, but they have not provided the financial support needed to run them. So the schools still need “parent donations” of about $20/ year. But since it is not an officially sanctioned fee, all the USAID funded programs and other large international NGOs will not pay the donations, and will only give school materials and supplies. So we’ve identified another definite need—ensuring that HIV infected kids on ARVs and Sosoma get their school fees paid. For every 100 kids, that would be ~$2000/year, each year until the children finish primary school.

In terms of mother to child transmission prevention at Nyacyonga Health Center, there has been only one infected child of the 30 pregnant HIV women identified and followed recently, and that woman hadn’t been tested prior to her pregnancy. Much of the clinical care in all 3 WE-ACTx clinics has been standardized and improved with the help of Lauren Cohen, a Chicago area nurse who has worked with MSF (Doctors without Borders) for most of the past 4 years. She has worked with us for 6 months and will sadly be leaving to work with MSF again, this time in Cambodia. She will train a senior Rwandan nurse over the next month and we are confident the good work will continue.

This summer the house is filled with bright talented young folks—always stimulating. The interns are working on school fee programs, youth projects, the income generation program (Ineza sewing collective) and a legal handbook on children’s rights.

In a couple of weeks, 3 Rwandan WE-ACTx staff (including peers) will join me and thousands of others in Mexico City for the International AIDS meeting. They applied and luckily received scholarships for their airfare and hotels. We have been accepted to present and have prepared posters and oral sessions on WE-ACTx’s Sunday children’s support group, the peer advocacy program, depression and PTSD improvement on ARVs, and the income generation program. Everyone will have the opportunity to learn about other programs all over the world and innovative approaches to HIV prevention and care.

The best part of these international AIDS meetings is the energy created by HIV infected persons and advocates fighting for full access to drugs, health care, food, and human rights for all women and men and children with HIV all over the world. Yet, even as our clinic cheered when we learned that the prosecutor of the International Criminal Court asked for an arrest warrant charging Sudan’s president of committing genocide, we know we need a sustained international movement to make governments and others respond to genocide and HIV. I so wish Claudine and Chantel could have been with us longer to help in this struggle.

Thanks as always for all your support,

Mardge

June has been a very busy month for Kigali. The annual PEPFAR (Presdent’s Emergency Plan for AIDS Relief) 4-day meeting just finished; a large mental health meeting is beginning and WE-ACTx held its second annual African Children’s Day celebration. With a second year of Ronald McDonald House Charities support and continued help from Pediatric AIDS Chicago and others, we are able to support a family centered program and concentrate on the needs of children and adolescent here.

African Children’s Day is acknowledged throughout Africa as a commemoration of the July 16, 1976 Soweto children’s massacre (major turning point in the anti-Apartheid struggle), but now highlights concerns of children living in Africa. Over 400 families (> 900 people) came on buses, played, ate, danced, sang, did face painting, heard poems and speeches and clearly enjoyed themselves. This year, we gave bright green t-shirts out prior to the event, sparing us that crush of kids wanting them as they left the party (last year’s mini-riot). Instead, our improved planning allowed the event to end with spontaneous dancing to reggae music with grandmothers, 3 year olds, volunteers, and staff swaying and dancing together as people waited for the buses to take them home.

In our rural clinic, Nyacyonga, we now have revised estimates of those needing to be served. There are 28,084 persons served by the clinic, including 1151 pregnant women. With the current HIV seroprevalence rate among tested pregnant women at ~7%, there should be 80 HIV infected pregnant women delivering at this one clinic each year, about half the number of HIV pregnant women delivering in the state of Illinois annually. The woman I met at Nyacyonga 6 months ago, soon after she found out she was HIV infected, is pictured here working as our mentor for other pregnant women. She delivered a healthy baby and is back motivating other pregnant women to get tested or for those who are HIV infected to take their medications. She is much more confident and happier now, yet anxious about the upcoming HIV testing of her infant.

Most women still don’t deliver at Nyacyonga even if they get prenatal care there, as they prefer to deliver at home and also because the current delivery area is bleak and empty and desperately in need of new equipment. The delivery suite at the right needs to be upgraded, and we’re struggling to figure out how to finance the renovation and support of the delivery area.

The family program continues to try to find new ways to make the lives of families here fuller and healthier. We have been concentrating on the large group of adolescents, almost all infected at birth, but who only recently learning that they are HIV infected. With the help of recent interns, the young people are confiding more and getting support from each other. Because some are sexually active, we are ensuring that the clinics provide family planning. One of the many interns here this summer is working with the teens and we’re really excited about creating the first-ever 3 day/week teen camp during their 3 week break in late July/August.

Adolescents need ways to voice their concerns about being HIV infected, disclosing their status, having anger against their parents, having sex and being safe, and most importantly, about their future. My good friend Donna Futterman (here for the PEPFAR meeting) discussed adolescent issues with our staff, motivating us all even more to develop this adolescent peer education/advocacy program.. I can already see our group traveling with a teens from the states throughout both countries, changing their lives, and raising awareness about young people with HIV globally. While the Family Program now conducts 12 support groups (1-2 every day except Saturday) at sites all over the city for over 340 mothers, fathers, grandmothers, children, and teens, there are still so many problems and areas that need attention. The sexual abuse of children and sexual violence against women continues. One women, that Mary Fabri (Psychologist and Director of the Kovler Center) has followed for the past year, became acutely ill this visit and required medical and psychologic intervention. She was a teacher who had lost her husband during the genocide. Two years ago she reported someone selling stolen goods. After the man was arrested and put in jail, he instructed his friends to seek revenge. These friends included a policeman who kidnapped the woman and tortured her for 3 days and raped her. She became HIV infected and had a child. She has been unable to work, can barely function, and is in constant pain. She has no money, has not been able to get her case through court, and her children hadn’t eaten for 2 days when Mary visited her smaller place this time. With the aid of doctors we’ve worked with over the past 3 years, we were able to hospitalize her and begin to address her problems. WE-ACTx will pay for the hospital bill and get her psychiatric intervention.

But we are also feeling hopeful. The grandmothers group now has 12 members who have begun weaving baskets for income generation. The sewing group has named itself Ineza which means “doing good for someone who needs it.” They are busy making a new line of shoulder bags with the help of one of our other interns which will be presented in an upcoming NY show in mid August. More family advocates are working with us, and can now afford electricity and furniture for their homes.

On a personal note, 2 of my friends and colleagues (Frank and Naila, who many of you have met and heard about) have recovered from surgery and a traumatic event and are doing well. It is impossible to shield those who work with WE-ACTx from the difficulties that so many face here. And for the first time, my husband Gordy joined me on this trip, and used a digital camera (also for the first time). He now better understands how difficult the history and present is for the people of Rwanda, how much our program does, but how much more needs to be done, and he seems to be hooked. This Father’s Day, we both had the unforgettable experience of resuscitating 2 drowning children. While people sometimes say Africa is drowning and there is little hope, perhaps this experience is an antidote to such pessimism. The two kids (from Belgian, visiting their Rwandan grandmother), are doing great, swimming every day with their “water wings” securely fastened and someone watching them at all times.

Mardge

I traveled to Rwanda this time with Mary Fabri and Mary Black (both from the Kovler Center for the Treatment of the Survivors of Torture) and Maureen Ruder, gynecologist from County Hospital. We stopped in London to meet with the Survivors Fund (SURF), and attend Facing History Ourselves’ event with Romeo Dallaire. WE-ACTx hopes to work with SURF and Facing History Ourselves on a traveling photo and video exhibition of testimonies of women who were raped during the genocide, infected with HIV and now are getting treatment for their HIV. SURF was started by a Rwandan in Britain to provide financial support for survivors of the genocide. Dallaire, the Canadian General who led the UN troops during the genocide, emphasized the personal responsibility each of us has to Africa.

Late January in Rwanda is really hot and very dry. There has also been a serious drought in this part of Africa, so that crops like maize and beans have wilted, adding to the malnutrition. We went to Butare, a city southwest of Kigali where the university and medical school are located, to meet with one of WE-ACTx’s senior pediatricians.  Walking through the market in Butare, you see and feel the broken people and the broken country. There are potatoes, plastic plates and used U.S. clothes. Nothing is colorful, except for the African fabric. No one rushes up to us ask us to buy this or that. It is quiet. When we buy some fabric, some boys in a crowd push us to buy brown paper bags for 100 francs (20 cents). These children are in a group—not with their parents. No one talks to any one. The faces are flat and sad. They look hungry.

We’re developing the psychosocial part of the children and family care and gathered lots of information from interviews and focus groups with WE-ACTx nurses and doctors and patients this week .Since October, 200 children with HIV have already been seen in the WE-ACTx clinic, and 10% have been started on ARVs because of their stage of illness. They do well on the medicines but have so many other needs. At the Icyuzuzo Association clinic, we saw two sisters, both with HIV, brought by their 53 year old grandmother. Their mother died in the past year. The 4 year old looked well and doesn’t require HIV medications yet. The 22 month old has AIDS, still doesn’t walk and spent the visit in her grandmother’s lap, sucking at her grandmother’s breast for comfort. She had a large infected blister scar from a kitchen burn on her foot that needed to be debrided. When we gave the 4 year old a pencil and paper for distraction, she seemed to be using a pencil for the first time. It was pretty tough.

Naila, who visited Chicago last December and met some of you, arranged for us to visit a family with 2 boys with AIDS during the Heroes Day Holiday this week when the clinics were closed. For the holiday, everyone fills the stadium and remembers the generals of the Rwandan Patriotic Front who died in the early 1990s, as well as survivors. As my Rwandan colleague said, the big shots talk and then go to a fancy gala and the rest of the people sit in the sun and “don’t even get a Fanta.” The newspaper reports that President Kagame called Paul Rusesabagina from Hotel Rwanda a U.S. film-made hero and not one for the true list of National Heroes.

The family we visited included the 68 year old grandmother and her grandchildren.  She raised 11 children, but all have died: 4 during the genocide, 3 from AIDS, and 4 from other causes. She lives with all 12 grandchildren aged 10-28 in the house that had belonged to the father of one of the boys with AIDS. The two boys with HIV are cousins.  She makes everyone 2 meals a day, alternating between potatoes and beans and cassava and beans at a cost of ~$100/month! She sometimes adds sugar to the soy corn meal from WE-ACTx . Since the boys started on medications, they are able to go to school regularly and have not been hospitalized at all in the past year. The grandmother picks up the ARVs (medicines for HIV) for the 2 boys while they are in school. The transport money from WE-ACTx is very helpful for this.

A focus group of mothers of children with HIV reinforced what we learned form the health providers and families. Everyone needs food and housing stability. Poverty is overwhelming. Food is tied to ARVs because the ARVs make people feel better and hungry. After food, people want school fees for their children to go to school. They worry about isolation, stigma, disclosure, and what will happen to their children when they die. What gives them hope to keep going? “Free medications.” “Trauma Counselors helping their spirit.” “God” “Knowing their children will stay in school takes their minds off their status.” We have big plans for children events, play groups, and, support groups.

The Research study continues in full force. Over 900 women enrolled and are now coming for their second visit 6 months after the first. Some returned in 3 months, after starting on HIV medications. County gynecologist Maureen Ruder is helping Gabriella Meredith (Chicagoan as well, in Rwanda since October) with the pap smear protocol.  This week they’ve performed 27 colposcopies and treated (with Cook County Hospital resident Toni Lullo) many women with dysplasia. So we are really thrilled about how much treatment has started. The Rwandan doctors are very excited about this. Most of the women told us in a matter of fact during their medical histories that they had lost a child, either from the war, HIV, or something else.

The food and income generation in the Remera site is still my favorite space. We also have HIV counseling and testing there. But there are still difficult decisions to make. The Rwandan government insists that NGOs only provide food or supplements for 6 months to individuals. Who knows what the government expects will happen if people are not hungry for longer than that. It’s not like the government is offering job training or jobs to help people obtain funds for food. We hope to continue to increase the income generation projects within WE-ACTx and the associations we partner with and come up with some creative long lasting food programs. We may soon be working in another district clinic in the outskirts of Kigali, much more rural area, where we can try out some    of these ideas.

Our house is pretty full with several interns and the crowd from Chicago. I’ve taken the cheap and crowded motor taxi (minibus) system, but prefer walking or motos (motorcycles). Most of the staff is still the same, though a few doctors have gone to train in South Africa or elsewhere. The staff have had some new babies and several more are on the way. Everyone is so welcoming as always.

The time always seems too short as there is really a lot to do. So little continues to make such a big difference. Naila said to me, smiling “I used to tell people in Chicago when they asked what my friends and family needed in Rwanda that people here want everything a person needs, but all they have is the air they breathe.”

Mardge