WE-ACTx Women's Equity in Access to Care & Treatment 2017-12-03T00:44:24Z http://www.we-actx.org/feed/atom/ WordPress John Reardon <![CDATA[December 2017 Donation Matching]]> http://www.we-actx.org/?p=1441 2017-12-03T00:44:24Z 2017-12-03T00:42:17Z .

http://www.we-actx.org/donations/

December 2017

Dear friends and WE-ACTx supporters,

Last month, the New York Times ran a story on the “used clothes” conflict between the United States and East African countries including Rwanda. The title of the article was For Dignity and Development, East Africa Curbs Used Clothes Imports. The U.S. seeks to continue exporting second hand clothes (global wholesale used clothing trade is valued at ~$3.7 billion). But the Rwandan government cites the need to develop local manufacturing, which can’t compete with rock bottom prices from used clothing imports.   The problem was exacerbated 20 years ago when debt crises, falling cotton prices and cheap Chinese imports, wiped out textile industries across Africa. The International Monetary Fund pushed African countries to open up trade, but the West protected its textile industries by restricting imports of yarns and fabrics from developing countries. Removing barriers to imports made clothing manufacturing in countries in Africa uncompetitive and almost disappear.  The Rwandans also make the point that wearing discarded hand me down clothing from the west disrespects the dignity of its population.  There are many more nuanced points to this discussion (not least of which is why do we buy and discard so much clothing in this country?). I bring this up in this end of year fundraising letter for WE-ACTx because it is a perfect starting point for reflecting on how we make donations and how we channel our charitable impulses in ways that are respectful and optimally constructive.

Thanks to your generosity last summer, in response to our appeal, WE-ACTx and WE-ACTx For Hope (WFH), our sister Rwandan organization, were able to maintain the children’s support groups and Ineza income generation activities this year, both essential programs providing psychosocial and economic support for patients with HIV in the clinic.  Providing this kind of comprehensive care to young and adult patients is a hallmark of WE-ACTx’s work in Rwanda. Currently there are 2230 patients seen in the clinic in Kigali including 58 children £12 years, 400 youth between 13 and 24 years and ~1550 over 25 years. Per the Rwandan Ministry of Health protocol, almost all (2023/2230) are currently on antiretroviral therapy, with 80% having complete viral suppression.   This remarkably high rate of viral suppression and healthy outcomes reflects the well-functioning caring staff, available medication, patients trusting their providers, and a comprehensive array of services which address nutritional, psychosocial, and medical needs, income supplements, educational opportunities and community stigma that comprise the WE-ACTx for Hope program.

Over the last 5 years, we’ve written to you about a special group of young people who are part of the staff of WE-ACTx for Hope staff– the 18 youth leaders who conducted the intervention to improve adherence to HIV medications in youngsters with HIV.  As the study draws to a close it’s telling to look at how much these youth taught us and how much they accomplished.  In addition to dealing well with their own HIV infection, becoming skilled at delivering the cognitive behavioral therapy intervention and being role models for the younger patients, they succeeded in other aspects of their lives as well. Five of the 18 completed university studies, 2 are still studying at the university and 2 completed high school during the past 5 years. Six have jobs outside of their work related to WE-ACTx.  Four of the students were married recently and 2 have children.  Many of the youth leaders acknowledge that the confidence with which they approach these endeavors stems from lessons on coping strategies and healthy choices they learned about during the research program.  We are so proud of their hard work and tremendous growth and hope their success continues.

Programmatically, WE-ACTx for Hope has continued to diversify and seek new funding to support the clinical program and its related activities, with backing from the Rwandan public health system.  Other funders include the Rwandan CDC, Keep a Child Alive, AIDS Healthcare Foundation. And this month Chantal and Bosco (the leadership team) are working on a submission to the Global Fund to provide additional support for women and girls with and at risk for HIV.

WE-ACTx has always had a tradition of taking its direction from local Rwandan women’s groups. WE-ACTx for Hope continues this tradition as it carries out the work in Rwanda.  Our support for WE-ACTx for Hope on their terms is so important because it represents our trust and solidarity for goals that we all share – addressing needs as they arise and building a more just and equitable world.

We are excited to tell you that one of our generous donors, the Robert F. Meagher Charitable Foundation and members of the Board of WE-ACTx have joined together to create this year’s matching fund for donations up to $40,000. So please make your respectful donations to an organization that appreciates your support and directs the funds where they are needed.  Thank you so much.

 

Toward a healthy and peaceful world,

 

Mardge Cohen

Medical Director, WE-ACTx

 

Please make your tax-deductible donation here:

http://www.we-actx.org/donations/

Or make checks payable to:

WE-ACTx

584 Castro Street #416

San Francisco, CA 94114

Thank you so much for your continued support

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John Reardon <![CDATA[Kigali Report February 2017]]> http://www.we-actx.org/?p=1420 2017-05-12T02:58:40Z 2017-02-06T18:17:31Z February 4, 2017

Dear friends

Like many of you, I joined in the Women’s March on January 21. The next day, I left Washington DC for Kigali. It has been difficult to keep up with each terrible assault/insult and the powerful resistance, but it’s almost impossible not to think about it all the time. Our Rwandan friends ask what happened to the United States? Some are surprised there can be such vocal opposition to a President. Others say they realize how much this affects them, and the whole world, and are terrified.

At WE-ACTx for Hope, the clinic continues to successfully serve 2000 patients and their families. Since January 1, the staff has been implementing the 3 month care visit for those with viral suppression. Previously the Rwandan national protocol required monthly clinic visits and medication refills. Now, about 2/3 of all adult WE-ACTx For Hope patients (plans for children and youth are underway) who meet the viral suppression criteria will attend clinic visits and receive antiretroviral medications every 3 months. Patients participate in a group educational meeting as well as individual sessions with counselors to learn about the new program and reinforce adherence for this longer duration between appointments. These extra sessions during clinic hours make the clinic day very busy, but by April, the number of patients attending clinic each day will be reduced, allowing us to spend more time with those who have not achieved viral suppression and need more attention. Our team of nurses, physician, lab technicians, receptionists and data managers are excited to meet this new challenge (as well as the progress it represents). Patients share that they are thrilled- they feel like they succeeded and graduated to a new level of care. One patient did ask if this meant they would only have to take one special pill every 3 months. If only!

WE-ACTx for Hope just received additional funding from AIDS Health Care Foundation. This supports a renewed prevention effort to enroll 20 new patients each month. A team goes out from the clinic to high seroprevalence areas in Kigali to educate, counsel and provide HIV rapid testing. In addition, a new effort to reach and provide counseling and testing for sex workers is underway at the clinic. A survey of 65 sex workers attending the clinic showed that these patients had the same rate of viral suppression as the rest of the clinic population. Those sex workers who are not virally suppressed will now meet regularly to support each other to improve adherence and follow safer sex guidelines. We will encourage these women to bring in other friends and coworkers for testing as this is a high risk group in Kigali. In addition, parents in the clinic who have uninfected children over 16 have asked staff to help them discuss safer sex and HIV prevention with these children. The counselors will be setting up youth-oriented workshops to provide this education and then offer counseling and testing for HIV. Implementing these new prevention efforts will help contribute to the national plan to prevent HIV transmission and allow WE-ACTx for Hope continue its leadership role in HIV prevention and care for women and children.

The S support groups have been reorganized to reflect the changing numbers and need of younger patients with HIV as well as available resources. Transportation costs have greatly increased in the city. This year, we will reduce group support sessions from 3 to 2 sessions (the first and third Sundays of each month) in order to have sufficient transport money for all children to attend. Quarterly parent group meetings will continue. In the morning, 100 older youth, aged 16-18, meet at St Famille school and have music, dance, yoga and group discussions with peer parents. Concentrating on this older group will allow peer parents to discuss gender role, HIV, school, and family issues.

IMG_5156

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They will also be able to learn about and discuss the logistics of new 3 month appointment schedule which will begin for children and youth later this year. About 100 WE-ACTx for Hope children between 7 and 15 years come to the afternoon group, held at Qadaffi Mosque for the past xx years. Those under 13 have yoga, drumming, traditional dance, modern dance, games, and soccer. The 13-15 year olds have more grown up discussions about health, school, and family. More peer parents will lead groups for the younger ones, so that more age appropriate attention will be provided. The peer parents lead the activities and their energy and enthusiasm carries the day.

Our yoga teacher is named Joseph. He began as a patient in WE-ACTx 12 years ago when he was 18 years old. In 2010, he completed secondary school and became interested in the yoga program. He sought more training and Deidre Summerbell, who runs Project Air helped him develop the discipline and provided the training for him to reach teacher status. Generous donors from Chicago supported these efforts over several years. Joseph’s physical appearance, demeanor, and approach to life are so beautiful, well-balanced, and mature that he inspires and models health for all of us.

yoga-comipile (1)

Today Joseph is earning a living for himself and his family. He teaches 3 yoga groups for non-Rwandan residents in different Kigali neighborhoods, and to both children support groups.  He is optimistic that he will continue to be healthy and have rewarding work. This is one of WE-ACTx’s many success stories – and most importantly so many contributed to help make this happen.

This trip was filled with several success stories of young people completing university studies, attaining jobs, and getting married.  I hope to share these details  with you in future letters, as your support has been so crucial.

Thank you,

Mardge

 

Mardge Cohen MD
PI, Women Interagency HIV Study (WIHS)
Medical Director, Women’s Equity in Access to Care and Treatment (WE-ACTx)
Boston Health Care for the Homeless Program

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John Reardon <![CDATA[PLEASE REMEMBER OUR RWANDAN FRIENDS THIS YEAR AND SUPPORT WE-ACTx’s CLINIC IN KIGALI]]> http://www.we-actx.org/?p=1410 2017-05-12T00:57:00Z 2016-12-06T23:35:17Z we-actx_logo1
http://www.we-actx.org/donations/

December 1, 2016

Dear friends and WE-ACTx supporters:

As we struggle these days to grasp the full implications of the election and the racism, sexism, and xenophobia, that it has unleashed it’s important to come together and to support each other and projects which respond to these challenges, which we hope you agree includes Women’s Equity in Access to Care and Treatment. WE-ACTx addresses global inequities and the HIV epidemic, especially for women and children.

Lessons Learned
I’ve learned from working with WE-ACTx in Rwanda for the past 13 years that the obstacles faced by women, children, and families with HIV in Kigali, Rwanda are relevant to each of us – their desire for respect, for accessible, free, high quality health care including reproductive rights, for free, universal, high quality education for all children, for secure housing, for enough to eat every day, to be safe from abuse and violence, and for the opportunities to earn a living and participate fully in their communities. And the contradictions I see in Kigali –where new, tall luxurious hotels and convention centers are being built, while the patients we have seen for 13 years still have no underwear — are related to the economic struggles and contradictions we see in our country.

So while the fight against global inequities in health care seems difficult and exhausting, (and lately has been less visible on the front pages of newspapers and on the airwaves) the only approach is to take the long view. Being part of the ‘60s and being a health care provider during the HIV/AIDS epidemic have reinforced for me how much we can do when we unite, make strong demands, follow the leadership of those most in need and oppressed, and don’t give up on making a better world.

The HIV epidemic affects gay men, people of color, sex workers, IV drug users and the most vulnerable in every community across the world. Working with Rwandan women’s groups and health care providers in Kigali, WE-ACTx For Hope, our Rwandan sister organization, has served over 3500 patients since opening the first clinic in July 2004. We have ensured integrated comprehensive medical and psychosocial care for women, men, children, and for over 400 youth and young adults. Since 2009, not a single infant has been born with HIV to any mother enrolled in our clinic. Youth friendly services including support groups, music therapy, yoga, vocational training and income generation have challenged the effects of trauma, poverty, stigma and loss that so many young people experience.

Taking Risks to Innovate
Your support has allowed the program to take risks, use innovative models, and make a real difference in the lives of the patients, health workers and the community. The clinic has implemented Rwanda’s Treat All Strategy: retesting all patients, providing special education classes at the initiation of therapy, starting everyone on antiretroviral therapy and monitoring, per WHO and U.S. recommendations. The clinic is instituting Rwanda’s Differentiated Service Delivery Model of ART allowing eligible patients with stable HIV on treatment to come for medical consultation every 6 months and pick up medications and have adherence counselling and support every 3 months instead of monthly. The clinic’s family assessment surveyed all parents/care-givers of 270 children under 18 years of age to identify factors which may reduce adherence to antiretroviral medication. Staff will conduct patient focus groups and develop strategies to address poverty, stigma, and family dysfunction.

Youth Support
I have been heartened by what seems like a galvanizing moment in our country, especially among young people. But I’m not surprised. I spend a lot of time with young medical students and house staff in Boston and I’m amazed at how many issues they care about and work on. I’ve also had the privilege of working with high school students from the Latin School in Chicago for many years now. Each year, under the direction of their teacher and organizer of international activities, Ingrid Dorer Fitzpatrick, they raise close to $15,000 to support a summer camp for 50 youngsters in Kigali. A group of students from Latin comes to Kigali and, as co-counselors with Rwandan youth leaders, bring hope and joy and tangible goodies to the campers.

Your Support
Finally, we are concerned about the reduction in funds from some of the other large donor organizations supporting WE-ACTx For Hope. Although they have successfully diversified their funding, the clinic still needs the security of feeling they are on firm ground in order to sustain the full service program they have designed. Please help us again this year so all the patients can move toward healthier and joyful lives.

Thank you for your support,

Mardge Cohen
Medical Director, WE-ACTx

Please make your tax-deductible donation here:
http://www.we-actx.org/donations/

Or make checks payable to:

WE-ACTx
584 Castro Street #416
San Francisco, CA 94114

Thank you so much for your continued support!!

Mardge Cohen MD
PI, Women Interagency HIV Study (WIHS)
Medical Director, Women’s Equity in Access to Care and Treatment (WE-ACTx)
Boston Health Care for the Homeless Program
312 925-5660

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John Reardon <![CDATA[WE-ACTx Benefit Concert November 16, 2016]]> http://www.we-actx.org/?p=1377 2016-12-06T23:38:23Z 2016-10-11T03:09:55Z we-actx-invitation

 

Please feel free to forward this invitation to family and friends.
ALL ARE WELCOME!

Here is what your ticket or donation can really do!

WE-ACTx BENEFIT TICKET PRICES

$100 – one ticket ($90, early bird ticket, pay by Nov. 1st)
Supports a peer advocate salary for 1 week

$175 – two tickets
Supports eight youth peer outreach workers for one month

$250 – three tickets
pays for a healthy snack for 250 youth at Sunday Support Group

$650 – Table for 8
Pays for Youth Coordinator for a month

$1,300 – Two Tables for 8
Supports a head nurse for two months

$50 – one student ticket
Provides emergency assistance for a family for one week

Tickets will be held at the door. 

Select amount:

Select quantity of ticket packages:

Will attend the event:

Yes

No

 

Unable to come but want to support WE-ACTx with a Donation.

Amount:

 

 

Ten years ago, Womens’s Equity in Access to Care and Treatment (WE-ACTx) answered a call from Rwandan women’s associations to help women with HIV gain access to life saving antiretroviral therapy.  Many of the women in these associations had been raped and infected during the genocide and were becoming sicker and had no medicines for HIV.  The men who had raped them were in jail and they were receiving medicines for their HIV infection.  Working with these grassroots women’s groups and the Rwandan public health system, WE-ACTx set up a clinic to quickly assess and start these women on antiretroviral medications for HIV.

 

The program expanded over the last decade and has provided comprehensive medical and psychosocial care to over 3000 women, men and children with HIV.  Mental health treatment, support groups, nutritional supplements, income generation, vocational training, school fees, peer advocacy, children and youth friendly programs have made a tremendous impact in improving the health and well being of the patients.  This all Rwandan staffed multidiscplinary program is a model for high quality HIV care in sub-Sarharan Africa.

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deirdre summerbell <![CDATA[Letter from Kigali July 2016]]> http://www.we-actx.org/?p=1355 2017-05-12T02:58:18Z 2016-08-06T16:03:56Z July 30, 2016

 

I am once again privileged and moved to offer you summer greetings  from Kigali.    WE-ACTx has now been working here for 13 years, with the work officially led by our local partner WE-ACTx For Hope (WFH) for the past 7.

 

To get a good feel for our program view this PBS Newshour segment on how Rwanda has responded to the HIV epidemic entitled:

 

How Rwanda, once torn by genocide, became a global anti-AIDS leader

 

Our colleague Dr. Sabin, head of the Rwandan Biomedical Center (RBC), told us that when he was approached by PBS to highlight challenges and successes in HIV care in Rwanda, he immediately thought of a rural perinatal reduction campaign and the youth work of WE-ACTx.  In less than 10 minutes you can be transported here to get the flavor of the faces, the successes, the future challenges, and most importantly the special young people working on the epidemic here. Although WE-ACTx is not mentioned by name in the video, you can see several of our programs, especially addressing challenges such as youth adherence and even see the library with giraffes on the wall painted years back by our artist friends and visitors from Chicago.

 

Services that engage youth in meaningful and friendly ways continue to be a centerpiece of our program.  Below a Musicians without Borders trained peer parent leads a drumming session with children who have come for their clinic appointments.  The beat travels from the downstairs music room throughout the morning on Wednesday children’s clinic day, pleasing many more than those drumming.  I get introduced to new types of music, inspiring ideas for the annual “Gordy and Mardge” music CD mix we love sharing with many of you each year.

 

We-ACTX July Kigali Letter Image 1

 

Summer camp has been a WE-ACTx tradition since 2009, when 3 Boston young advocates (Gia, Chloe and Dan) raised funds from friends and families to start the project.  Rwandan youth coordinators now prepare and lead the entire process. For the past 7 years, Chicago’s Latin High School, under Ingrid Dorer Fitzpatrick’s creative and persistent leadership has provided major support the camp both financially and through volunteers.  Each summer, 4-8 Latin high school students travel to Kigali and join Rwandan peer parents as co-counselors for a 2-week day camp experience for our young patients, aged 11-14.

 

We-ACTX July Kigali Letter Image 2

 

The campers play, dance, draw, sing, do yoga exercises, have a large lunch and thoroughly  enjoy themselves.  They prepare a closing ceremony with performances for the families of the campers.  All smiles and happy times for everyone.  And the bonding among the Rwandan and U.S. counselors is a special highlight; the relationships continue with Facebook and texting after the students return home.   Many of the Latin students have returned for a second trip, solidifying the bonds even more and proving that “being there” is really what matters.  This inspiring collaboration has been so important for the youngsters served by WE-ACTx, and the growth of the counselors from both countries.

 

Our NIH funded research, the Kigali Imbereheza Project (KIP), devoted to improving adherence in youth with HIV aged 14-21 has completed all 9 “waves” of intervention.  This remarkably successful project will now move into the final phases of collecting assessments from the participants over the next year and begin to formally analyze  the results of this randomized controlled trial that we are conducting in collaboration with Hektoen, the University of Illinois, and the Rwandan Biomedical Center.  One reason the study has gone so well has been the hard work and amazing leadership of the KIP study project director Charles Ingabire.  So you can imagine how special it was that we were able to attend his wedding during this visit.  Pictured here is Charles, along with Peace Corp Volunteer Cari, Mary, me, Geri, and Josette from the KIP project in traditional Rwandan dresses at the wedding.

 

We-ACTX July Kigali Letter Image 3

 

Summer interns (Rush medical student Stephanie Ross and college student Lizzy Hilt) worked on helping us better understand ways stigma affects youth in our clinic, especially those in boarding schools.  In order to protect their confidentiality youngsters attending public boarding schools (about 25% of Rwandan students) have to hide their antiretroviral medications and often skip doses or stop taking their pills.  This may in part explain the lower rates of viral suppression among these younger patients (only 70% among those aged 13-24 compared to 84% for the entire clinic population).  While we are hopeful that we will see improvement through our KIP study, we realize that broader advocacy efforts, including working with the Ministries of Health, Youth and Education will be needed to meet this country wide challenge.

 

I was personally saddened to learn that one of our dear patients who has been with WE-ACTx since the beginning and is also now a close friend, was diagnosed with cervical cancer.  She had sought care herself in Uganda and received some radiation, but has now learned from a CT scan in Kigali that the cancer has spread.  She needs additional palliative radiation.  Patients in Rwanda are sent to Uganda for this; but the machine in Uganda is currently broken.  Expected to be fixed in a month or so, Rwandan doctors will then send 2-3 persons a month with cervical cancer to the Ugandan program.  Sadly, there are more than 200 women on the waiting list for radiation in Rwanda. Where you are born and live still determines how you will fare with this cancer, the major cause of death from cancer among women in Africa.  Even with the potential of vaccines, early screening and treatment, many women here are still left behind, many with treatable complications.  We are hoping to raise the funds to help fast track the needed radiation for this special patient.  Cervical cancer was already one of WE-ACTx’s priority areas. We screen many women in WE-ACTx for cervical cancer and hope we and others in Rwanda can have a more positive  impact on this important public health concern.

 

On a brighter note related to public health challenges, the Rwandan Biomedical Center under Dr. Sabin and others, has negotiated with donors and several drug companies to provide treatment of Hepatitis C at a cost of $800/patient, far below U.S. costs.  Government supported treatment will be available to those diagnosed with Hepatitis C at public and private clinics. Hepatitis C rates in Rwanda are not known, but is estimated at about 4%. Globally, people with hepatitis C and their allies from have protested the outrageous price of lifesaving HCV medicines and the greed of the industry.  They are pushing for generic competition to bring down the price of HCV treatment and ensure universal access. While walking to the clinic one morning this week, I saw this queue.  By the end of that one day, 2600 people had been tested for Hepatitis B and C and had received their first Hepatitis B vaccine!

 

We-ACTX July Kigali Letter Image 4

 

Looking back over the past decade of work with WE-ACTx, I am still without words to fully describe all the successes, challenges and failures of an under-resourced health care system and what a difference a well run clinic committed to comprehensive, integrated medical and psychosocial care for women, men and children with HIV has made.  Small victories, sad losses, continued hard work and a long road ahead.  Thank you for your continued support as always for the staff and patients here.

 

Salud,

Mardge

www.we-actx.org

 

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John Reardon <![CDATA[Letter from Kigali January 2016]]> http://www.we-actx.org/?p=1336 2017-05-12T02:57:32Z 2016-01-27T15:24:01Z Dear friends

Thank you so much for your generous response to WE-ACTx’s annual appeal. Your support helps continue the high quality and innovative programs of WE-ACTx For Hope (WFH), our Rwandan partner. Without your support, little of the good work and exciting progress described below could continue. Thus as I begin another new year in Kigali, I am so grateful to be able to share some news and personal reflections about the growth and strength of WFH.

Rwanda now has 70,000 people fleeing from the conflict in Burundi within its borders, most residing in refugee camps. WFH’s Youth Music Leaders (young patients with HIV who have graduated from our peer parent program who were then trained by our partner Musicians without Borders) are currently working in the Mahama Refugee Camp. Mahama is in the eastern province of Rwanda near the border with Tanzania. Musicians without Borders supports six of our Youth Music Leaders to travel to the camps and train groups of 30 young Burundi refugee community leaders who then in turn support hundreds of younger children in Mahama through music. During breaks in the training sessions, the Youth Music Leaders heard stories of loss, loneliness and fear from the Burundi young people. Many of those being trained were sent to Rwanda by their parents who feared for their safety s youth are being targeted. Others had recently seen one of their parents killed and are grieving. It is very intense as this displacement is overwhelming and reminiscent of the history of Rwanda and their own families’ stories. But the Youth Music Leaders also reported that the young refugees share how happy they feel while making music and how the music frees them, even for a short time, from their sadness and fear. Your donations and support for WE-ACTx’s youth program over the years have helped to make this possible. According to a recent report from United Nations High Commissioner for Refugees, violence around the globe has forced almost 60 million people from there homes, living as refugees or internally displaced people, the highest number since WWII. With so many people living as a refugees or internally displaced persons, it’s pretty amazing that youngsters from WE-ACTx are now part of making a difference in this disastrous global problem.

Kigali Jan 2016 1

I participated in our Youth Research Program Team 3 day workshop. We are in the fourth year of the 5 year NIH grant I described in past letters to improve adolescent adherence to antiretroviral therapy. This past week, we previewed some of the study’s data and preliminary analyses of the first 200 participants (we will finish enrollment in August 2016). Our team collaboratively wrote 6 abstracts for submission to the International AIDS Conference that will be held in Durban, South Africa in mid July 2016. Our submissions report on multiple accomplishments: better immune status at 6 months, reducing gender based violence to improve adherence, how the intervention increased caregivers HIV knowledge and reduced stigma, the effectiveness of our training approach, how the intervention reduced risky behaviors at 6 months, and mental health changes at 6 months. We are hopeful that some of these abstracts will be accepted for oral or poster presentations in Durban.

Our staff has completed the formal Family Assessment of more than 270 families with children 18 and younger followed in the clinic, and we have starting examining the results. All of the families were found to be in the lowest income levels (as we expected); but over a third report their child eats only one meal a day and is unable to pay their school fees. Over a quarter have lost at least one parent, and 15% are orphans. We looked at the relationship of these and other psychosocial variables to viral suppression (the best objective outcome to measure successful treatment for those infected with HIV). We found that a child with one parent was more than twice as likely to be virally suppressed than an orphan. In addition if the child’s caregiver reported the child experienced stigma about having HIV or reported sometimes getting so angry they physically hurt the child, the child was significantly less likely to be virally suppressed. Fortunately, the younger children are less likely to be orphans, as their parents are doing well on medications now and living longer. We are working with the staff and patients to design and implement interventions to address stigma, anger and abuse for these children aimed at improving their health outcomes and lives.

Kigali Jan 2016 2

The Children Support Groups continue to mature. About 120 older youth, (ages 14-22 ) come to St Famille every Sunday morning to play music and perform traditional dance and then discuss various topics. Some of the older youth have now been trained by the peer parents to facilitate discussions among their peers. Topics include disclosure of HIV status, taking antiretroviral medication at boarding school, and reproductive health. The younger children (6-13years) are still gathering at the Qadaffi Mosque site each Sunday afternoon, coming together for play, a nutritious snack and an opportunity for traditional dance, yoga, or modern/hiphop dance. Amazingly, there are now no children younger than 6 in our program–perinatal transmission has been successfully prevented in all pregnant women in our program since 2009. One newsworthy event is that a member of the girl’s national football (soccer) team who has recently become a patient in WFH clinic has volunteered to coach a WFH girl’s team (10-13 year olds). Any extra team shirts out there for the girls’ team?

Of course, financial sustainability is a giant issue for WE-ACTx and WFH. Although several of our recent applications for funding have not been successful (WFH did not receive global fund support that we were hoping to obtain), we are thrilled that 3 new donors have recently begun to support the work. UNAIDS, dotHIV (German organization), and AIDS Healthcare Foundation (AHF). These new donors are contributing to WFH and are supporting prevention outreach programs, SOSOMA nutrition program and some clinic staff and operational costs over the next year and hopefully in years to come. Efforts to more fully integrate into the public health system are also continuing. Having these strong donors and collaborations makes WE-ACTx’s contribution even more important as together they ensure the stability of WFH and it’s good work. One behalf of the 2500 patients we have served and the 40 Rwanda staff at our 2 clinics, we thank you.

Kigali Jan 2016 3

Finally, this is my good friend Naila (on the left), whom some of you met when she was in Chicago a decade ago with her daughter Nadia and granddaughter Malka visiting our house in Kigali. It is so nice to see them together, enjoying life and looking so healthy. Naila has been a peer advocate at WE-ACTx for many years and was one of the first patients in Kigali to start on third line therapy. I love pictures of 3 generations and hope you do as well.

Thank you for your continued support for WE-ACTx,

Mardge
www.we-actx.org

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John Reardon <![CDATA[Kigali Letter June 2015]]> http://www.we-actx.org/?p=1322 2017-05-12T02:57:58Z 2015-06-10T15:30:55Z Dear all

The rainy season has ended in Kigali and the weather is dry and warm. Many colleagues here have friends and neighbors who are housing those who’ve come from Burundi. Thousands from Burundi also live in terrible conditions in camps 2 hours from Kigali. Travel and business has been disrupted between the two countries. It’s unsettling politically as well for Rwandans, as President Kagame has come out against the Burundi President remaining in office. At the same time there are pressures to change the constitution here in Rwanda for Kagame to remain after his term ends in 2017.

I want to thank those who have already responded to the recent WE-ACTx mailing and donated to our “Spring to Successful Schooling Campaign.” WE-ACTx clinic staff have been busy assessing children and families to best direct our resources to most effectively address their problems. We have learned much from these assessments about the challenges facing children and their families. Many young patients have had interruptions in their schooling (because of being ill, not having school fees, or various parental difficulties) and are therefore uncomfortably much older than other students in their grades. Others are unable to receive their grades and report cards simply because they cannot present their school fees. A significant number (nearly 20%) of those who are mothers report they trade sex for money in order to feed their families. And housing continues to be a problem for many families.

We have learned that it is particularly important and rewarding to support those in school with disabilities, as well as encourage young women and men to try to go to vocational schools and the university. Our collaboration with Musicians Without Borders has resulted in trained Youth Music Leaders who lead all of the children’s activities in WE-ACTx and annual summer camp. In the last few months these Music Leaders have also been hired at nursery schools, church programs, and schools. These new jobs will make a big difference in their lives and those of the young children they will teach. Below, animated Leontine leads the young school children in singing and clapping.

 

weactx June Kigali Letter

 

Our clinic is continuing its efforts to improve adherence to antiretroviral medication so that our patients will have viral suppression (undetectable viral load by laboratory tests) and live long and healthy lives. Wonderfully, 90% of patients in WE-ACTx over 30 who are on antiretroviral medications have viral loads that are undetectable! Unfortunately, younger patients are not doing as well– only 75% have undetectable viral load levels. Many of these younger patients were born with HIV and thus have had the disease much longer, and have had longer periods without effective medications. They have more resistant virus and need more attention and better therapeutic options, some of which are becoming available here in Kigali.

We have also analyzed the new patients coming into WE-ACTx in the past 2 years. Of 100 patients without any previous care, 1 in 5 have a diagnosis of full blown AIDS with low CD4 < 200 (marker of advanced disease). More efforts are needed to bring people into care earlier. Many of you may have seen the publicity about the recently stopped large global study showing that earlier start of treatment results in longer and healthier lives for people with HIV.

WE-ACTx For Hope (the local organization who now owns and runs the clinic) has been recognized as a program which delivers high quality care in Rwanda. The Minister of Health/Rwanda CDC has just allocated funds to support several nurse, lab and data manager positions this year (and hopefully these will continue) in acknowledgement of this work. This support increases the stability and sustainability of the clinic in Kigali and speaks to the importance of local governance and responsibility.

Summer always brings interns and new projects to WE-ACTx. The income generation programs are gaining traction with help from our partner Manos de Madres newly hired staff and an intern from Tufts Fletcher graduate program. Also this month, a graduate student in psychology from Boston University is working with the KIP research team to learn about coping strategies of HIV infected older youth. Two college students are joining soon and will help staff work on clinic programs, the summer camp, and educational efforts.

I was lucky to be in Kigali this year again for the WE-ACTx celebration of Day of the African Child. The day is a giant party for children who are patients at the clinic and their families. Over 1200 people came, played, enjoyed the park, watched wonderful dancing, singing, drumming, and theatre, organized by the peer parents and youth leaders and ate a big buffet lunch.

 

weactx June Kigali Letter 2

 

It was truly beautiful to see so many healthy and talented young people. Representatives of the WE-ACTx Board, the Rwandan Biomedical Center of the Ministry of Health, and other visitors joined in the festivities and were overcome by the enthusiasm, strength and joy of the youngsters.

 

weactx June Kigali Letter 3

 

I wish you all could have also enjoyed watching the youth perform traditional dance, modern dance, hip hop, and sing together. We have seen these youngsters grow up over 10 years and continue to be amazed at how strong, creative, and hopeful they are. Thanks for your support in keeping WE-ACTx going.

In appreciation,
Mardge
www.we-actx.org

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John Reardon <![CDATA[Spring to Successful Schooling]]> http://www.we-actx.org/?p=1283 2017-05-11T22:37:55Z 2015-05-27T12:41:30Z  

we-actx_logo1

www.we-actx.org

 

May 23rd, 2015

Dear friends,

As spring awakens all around us, I’m writing to you to support our work in Rwanda. As you know, WE-ACTx usually sends only one annual mailing to supporters. But in the past few months, some of you responded to my February letter from Kigali and asked how you might help the many young patients who want to go to school and get job training to better their future. Many of you already sent donations specifically for school fees and to support students who had been denied schooling because of disabilities. We were very moved by this outpouring and are sending this mid-year appeal specifically to solicit support for this new initiative.

Because our two WE-ACTx for Hope clinics provide high quality care for over 2500 persons with HIV in Kigali, there are now 600 patients under 24 who are getting stronger and healthy, and are hopeful that they may have long and productive lives. But antiretroviral pills and nurses are not enough to make this happen. Likewise, just giving school fees will not automatically result in educational achievement. The broad array of problems (stigma, poverty, unstable housing, abuse) facing families with HIV puts these youngsters at risk for failure to complete secondary school and find jobs. Only by addressing these needs will we be able to help these families provide the foundation needed for successful learning.

In March 2015, WE-ACTx for Hope began a yearlong intensive effort “Spring to Successful Schooling” to assess and address these needs and help facilitate a pathway to a better future for our youngest patients. During this year we plan to:

 

  • Conduct in-depth individual and family assessments by a multidisciplinary team of doctors, nurses, counselors, and psychologists to identify and address the most pressing challenges facing these families (unstable housing, drug and alcohol problems, incarceration, severe poverty, abuse and neglect)
  • Identify parents who may not be taking their antiretroviral medications regularly to promote better adherence strategies for the whole family
  • Sensitize and provide family planning to young women aged 18 (youngest age this is legally permitted) -24, to prevent unwanted pregnancies and enable reproductive choice
  • Utilize peer counselors to sensitize older girls and boys to treat each other respectfully and understand gender based violence
  • Identify and address school problems including stigma, discrimination and need for tutoring
  • Seek community support for stable housing
  • Increase access to school and job training for those with disabilities and limited opportunities
  • Work with older youth to find vocational and university opportunities and funding

 

 

Please help our “Spring to Successful Schooling” campaign. Your support will help our staff launch this important project this year as well as help the youngest WE-ACTx patients have a better future.

I look forward to giving you more details when I write you again from Kigali during my upcoming visit in June.

Thanks for all your support,

Mardge Cohen
Medical Director, WE-ACTx









You can support our Spring to Successful Schooling campaign by donating
using the above “Donate” button or by mailing checks to
WE-ACTx
584 Castro St. #416
San Francisco, CA 94114

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deirdre summerbell <![CDATA[Can anyone really make a difference?]]> http://www.we-actx.org/?p=1279 2015-06-12T13:07:04Z 2015-02-26T03:47:52Z Writer Ken Carlton created a lovely photo essay to tell the story of WE-ACTx. If you’d like to read it and see the pictures, his blog is found at this address:

 

http://kencarlton.net/ramenblog/2015/2/21/can-anyone-really-make-a-difference

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John Reardon <![CDATA[Kigali Report February 2015]]> http://www.we-actx.org/?p=1265 2017-05-12T02:59:22Z 2015-02-20T21:23:00Z 2/2/15 Heroes and Schools

Dear friends

Today is the celebration of Heroes Day in Kigali, a national holiday every February 1st, to honor heroic actions of those who died for Rwanda during the genocide. The WE-ACTx For Hope clinic is closed, as are all schools and most businesses, so I am able to pause and share my thoughts and updates below. There are local memorials and gatherings held throughout the country which commemorates heroic acts such as those by the students at Nyange Secondary School who during the Rwandan genocide refused to identify the Tutsi students, and as a result of this courageous act were all killed by the rebels.

This is the first year there wasn’t a national ceremony at the stadium; instead there is a Heroes Day tennis tournament underway, which some of our friends went to yesterday, along with a national Heroes Day hoops tournament (basketball). Although many of you know I am not a big sports fan, there is something very healing about recreation taking the place of massacres and memorials as the pre-occupation of the day.

In Rwanda, the extended school vacation now runs through November and December, ending later than usual this year, with the school year restarting on January 26. Like in September in the states, school supplies are bought, school uniforms fitted, and families prepare their students to start schools. However, while most youngsters attend primary school, fewer go on to secondary school. Publicly funded secondary school is more costly and tracked. Only those who score highest can go to the better schools, including boarding schools; others who do well can attend second tier schools (these cost about $200/term including uniforms and materials). For those with lower scores or who can’t afford these secondary school fees, there are less expensive and lower quality “9 year” and “12 year” schools. Private academic and vocational schools are even more expensive.

As the young patients in WE-ACTx For Hope (FH)clinic continue to do well and feel stronger physically, more want to attend secondary school, as do those older youth who never completed their schooling when they were younger. So every year we face the annual dilemma of how to respond when these students come to the clinic asking us to help pay their school fees. While WE-ACTx FH does support students in a variety of ways, we no longer have any specific grant for school fees. We are hoping to change this. WE-ACTx FH has applied (and hopefully will hear in the next month) to be included in a country-wide program to help support school fees for vulnerable children. It seems tragic to waste the talents and learning lives of these precious children for lack of these low-for-us, but too-high-for-them fees. Of course this year, we again dipped into our own pockets and the clinics’ stretched budget to support those who came asking for school fees last week in order to start the school term.

This month, the WE-ACTx FH staff was very discouraged when we learned that two 14 year old girls attending the clinic were pregnant. One described her relationship with her boyfriend, which began when she was 11 and he was 17. When she told him she was pregnant, after the clinic nurse took a pregnancy test, he moved away and is no longer reachable. The other girl lives with a guardian, as her parents died. She reported having sex with a 20 year old neighbor who bought her things, and then with his older brother, who didn’t use condoms. Neither of these 2 girls realized they were pregnant. Now both are prohibited from attending school until after the babies are born. In Rwanda it is illegal to give contraception to girls under 18, though education about reproductive health is now allowed. We are working with the WE-ACTx FH staff to determine if any red flags were not recognized in these young girls, and whether they can be more alert to warning signs in other young patients. Increased efforts towards small group discussions of reproductive health issues and ways to promote respectful and responsible male behavior are underway.

On a more uplifting note, the number of patients on antiretroviral therapy at the WE-ACTx Clinic has increased as Rwanda has started following WHO guidelines to treat people with HIV with CD4 cells < 500 (previously patients had to have CD4 cells < 350 to qualify for treatment). Currently 2069 of the 2400 patients followed by WE-ACTx FH are on antiretroviral medications. And a remarkable 84 % of these patients have undetectable viral loads. This high number of patients with viral suppression speaks to excellent adherence by those attending the clinic, a testament to both staff and patient efforts. Older patients have the best adherence, with almost all those over 55 having fully suppressed viral loads. Younger patients including those born with HIV who have been infected for a long time tend to have higher rates of unsuppressed virus. We continue to use a Direct Observation Therapy (DOT) strategy for those with the most advanced disease progression to promote adherence.

We are excited to have just hired a new full time Rwandan physician who is both a wonderful clinician as well as someone with the skills and interest to help us monitor quality and develop new programs as needed.

Finally, I want to let you know how Pretty is doing. I’ve written about her previously as a bright young teenager who unfortunately had a stroke when she was 16 (from vasculitis secondary to her HIV) which left her unable to speak or use her dominant right hand (see the photo of her working with our music therapist Chris in my January 2014 letter from Kigali archived at www.we-actx.org). Finding a school for her has been very challenging. She was told by her previous boarding school, where until she had the stroke, was one of the top students, that she could not return because she had lost the ability to speak and couldn’t independently take care of herself. Pretty’s mother and staff at WE-ACTx have spent 2 years trying to find a school in Rwanda which would accept her. After first being rejected, she is now enrolled in Senior 4 (similar to 10th grade) at Gatagara Secondary School, the only high school for physically disabled students in Rwanda. It has 400 students, including some who are hearing impaired and some using wheelchairs. The school is located in Butare, a 2 ½ hour car ride from Kigali Last week I visited the school with Henriette, WE-ACTx FH Youth Director, who has been assisting Pretty and her mother. Pretty was happy and well integrated into the program; she has many friends. We watched her perform in the classroom and her daily regimen with the physical therapist.

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school is well organized with about 50 students in each classroom. There is a chemistry and physics laboratory. The students eat together, live in dormitories and have a structured schedule that Pretty really enjoys. One of WE-ACTx’s good friends Christine Curci who has been in Rwanda for a couple of months each of the past few years will be returning and is bringing Pretty a lap top to help her with tests and papers as writing with her left hand is still very difficult. WE-ACTx FH will use a portion of the money raised last year from the generous donations you all made in honor of my 2 children’s weddings to pay the full 3 years of boarding school fees for Pretty.

As of mid January, we have completed half of the enrollment for the NIH-Funded Youth Adherence Study. Retention for the 6 month assessment is phenomenal (only 1 of the 159 youth enrolled did not come to the study visit, and since returning to the clinic, she has is scheduled for the twelve month assessment). The retention rate is 99.4%.

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Here is the youth leader team enjoying their success.

Many of you have received (in the mail or in person) the “Mardge and Gordy 2014 Favorites” annual music mix CD which this year featured pictures, and even a few songs, from WE-ACTx and Rwanda (cover pictured below). If you didn’t, but wish to get a copy, please let us know your snail mail and we would be happy to send one as a thank-you and way of sharing our joy for being able to continue to do this work here in Rwanda.

 

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Mardge

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