A HEARTY THANK YOU TO ALL OUR AMAZING SUPPORTERS IN CHICAGO!

photo by Emily Grimes

In Chicago, there’s a special kinship for the WE-ACTx community in Rwanda. More than 200 people participated in a fundraiser at The Latin School of Chicago on Thursday, May 16, to celebrate and support nine years of breathtaking progress in Rwanda.

The spring benefit, which raised nearly $40,000, brought this enthusiastic group up to date with WE-ACTx, as it raised more funds than ever before.

Aime Ndorimana photo by Emily Grimes

Mardge Cohen, WE-ACTx’s Co-Founder and Medical Director introduced Aimé Ndorimana, WE-ACTx peer youth educator from Kigali. He told those gathered about how WE-ACTx youth are fighting HIV stigma and discrimination, and produced a powerful short film, which he screened.

photo by Deborah Heer

Chicago supporters enjoyed fellowship, delicious food by Quest, shopped for treasures from a varied array of the INEZA cooperative’s hand-crafted items, and bid on silent and live auction items provided by more than 100 generous donors.

For the first time this year, WE-ACTx’s silent auction launched online two weeks prior to the event , dramatically widening the bidding audience.

Nico Olszewski from West Chicago, IL at the fundraiser where he made his contribution.  When his school found out, they gave him an outstanding service award!.

Even if you missed the event or the auction, you can still play a role by helping WE-ACTx with a donation.

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

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).

WE-ACTx Rwandan staff

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

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.

Sunday Support Group with Chris Nicholson music therapist

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!

“young mothers” group, a weekly support group facilitated by our trauma counselors

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.

"WE-ACTx for Hope" Rwandan NGO colleagues

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

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.

Celebration of "Day of the African Child" (DAC)

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.

Learning Yoga on the beautiful new mats

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.

New Library within WE-ACTx clinic

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

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.

Putting faces to the stories

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.

Dossa, a 23-year old who translated for me at the weekly support session

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.

Felicite, her daughter and new grandson

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.

Road to St. Famille School, near downtown Kigali

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.

Sunday School Family Groups

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..

Children don't always know they are infected

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

WE-ACTx “peer parents

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.

Youth activities include yoga, dance and soccer

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