WE-ACTx

Dear friends,

It’s official.  Two weeks ago, the Minister of Health accredited WE-ACTx For Hope (WE-ACTx’s vibrant partner in Rwanda, led by Chantal Benekigeri) to manage the clinic in downtown Kigali—a very exciting step toward helping ensure local control, responsibility and sustainability.   WE-ACTx For Hopes’s forty Rwandan staff provide medical and psychosocial care to more than 2000 patients at this site. Support for their work is of course still needed and will continue to come from WE-ACTx supporters in the US (as well as supporters in Canada, Australia, etc.).  But these steps forward allow the clinic to be much more integrated into the Rwandan public health system and enable access to additional resources available for local NGOs.  This includes consultations to assess patients who might need third line antiretroviral regimens because of viral resistance and continued quality improvement activities to maintain WE-ACTx FH’s high retention rates (>94%).

Even with these exciting new developments, WE-ACTx’s summer activities follow a regular pattern.  Each summer begins with the June 16th Day of the African Child event. WE-ACTx sponsors 1000 people, including 400 young patients and their siblings and parents at the Presidential Palace Museum, home of former President Habyarimana whose plane was shot down in April 1994 (the plane is still left on the grounds). A wonderful day of celebration and appreciation inspires everyone.

Then the summer interns arrive – a variety of young folks who volunteer and are integrated into the workings of the program.  This summer Jessica Early re-joins us.  She is now a student in the RN/NP program at Yale.  Jess was a volunteer with WE-ACTx in 2009 when she facilitated the youth leaders group and helped the income generation sewing collective, Ineza, develop a website with their stories and mission.  Now she’s using her new nursing skills to work in the clinic each morning, learning and sharing.  She’s also helping us catalogue the stories and priorities of the members of the Young Mother’s Group (a support group for about 20 women who have young children and few resources).  We’ve learned that in addition to their precarious housing, lack of income, history of rape and abuse, and significant stigma because of their HIV, almost half are illiterate.  As is the case with much our work and journey here, this discovery had led us to branch out to explore ways to develop a literacy program for these young mothers, which they (and we) feel will help them, their children and their future.

Each July, another returning volunteer, Gia Marotta, prepares the annual summer camp sponsored by Latin School in Chicago.  Since 2009, Gia has returned to Kigali and directed this wonderful summer arts youth camp for about 50 HIV infected WE-ACTx patients ages 11-13.  Students from Latin School in Chicago raise funds ($20,000) each year for this camp and a group of Latin high school students and their advisor (Ingrid Dorer Fitzpatrick) return each summer to assist.  This year, the staff filled the roster with new campers along with a few youngsters who had been at camp previously but who staff felt would benefit from the increased attention.  And then the protests began!

A group of 13 year olds organized to demand to return to camp as well. They argued their case, with strength in numbers.  The staff heard them out and after an energetic discussion reached an agreement to offer a special program starting next year for those who have already been to camp.  The picture above was taken after the resolution.  We love their spirit (and the added demands it has placed on us)!

One 12 year old who will be coming back to camp this summer is Simon (not his real name).  Simon’s family is very poor.  Each month, his mother tells  us she has to choose between paying the rent and feeding Simon and  his 14 year old sister and 5 year old brother.  The family is one of those receiving the WE-ACTx’s  monthly Sosoma (nutritious porridge) supplements, but as they have little else to eat and use it as a meal for everyone, it lasts only 2 weeks.  Simon learned about his HIV status when he was 10 and has been having some difficulties at home and school since then.  He had to repeat second year of primary school and hasn’t been in school for the past term because he lacks the needed school fees. He has taken to stealing hardware like door handles and locks and water faucets to sell to get money for food.  Two months ago he was caught and put in jail with adults.  In Rwanda, it is illegal to send children like Simon who are under 14 to jail.  We learned later this can be challenged but requires some proof of their age (few here are born in a hospital and have a birth certificate).  Simon was abused in jail and wasn’t given any of his HIV medications, and his HIV relapsed.  Upon his release, his mother brought him to WE-ACTx and he was hospitalized for a week.  The psychosocial team, with help from Mary Fabri, long term WE-ACTx Mental Health Director (and my close colleague and friend from Chicago), is working intensively with Simon and his mother.  Funds are being secured for rent for the family and school fees for Simon. We are sensitizing the staff to more swiftly learn about any jailings to ensure that younger patients are freed and older ones receive their medications while there.

This summer, Project Air (the amazing Yoga program in Rwanda working within WE-ACTx support groups) has started a new yoga group for young women.   The girls did not want to learn yoga with boys and had trouble finding clothes they were comfortable in to practice. So Deirdre Summberbell, Project Air Founder & Director, secured yoga mats and free flowing stylish yoga pants which magically jump-started their yoga postures as you see above. Deirdre is training two WE-ACTx patients to be yoga teachers in a program supported by Chicago donors.  The way our patients have latched onto this approach to heal their minds and bodies has been extraordinary.  Particularly for this new girl/young women’s group, their strength and discipline have been motivating and inspiring and we look forward to their next steps.

Unfortunately, the Rwandan government has significantly reduced the number of scholarships to the national university, so many WE-ACTx youth finishing secondary school are unable to continue their education and are unemployed.  Unemployment among youth in Kigali is high (like the very high rates being reported in Europe, and among African American young men in the U.S.).   Thus for the past 6 months, WE-ACTx has been hiring youth leaders who completed secondary school to work.   These paid interns assist in the clinic with administrative tasks, educating patients, and facilitate the Sosoma distribution program.  The interns have done a great job.  Above, Malka (left, in white and with arms raised) is having a  “clinic chat” with young patients during the Wednesday Children’s Clinic Day.  She is encouraging them to take their medications, and answering their questions about living with HIV.  She has already become one of our most dynamic teachers and very much appreciated by the patients.

Mardge

www.we-actx.org