Reflections

UW Madison Alumna Sweta Shrestha and I visited the Hamlin Fistula Hospital on behalf of our students on Friday, December 2, 2011.

The fistula ward was not what I expected.  For one thing, I thought it would smell.  I had prepared myself to smile, stand close, show no sign of revulsion.  I did not want to add one iota to the pain or shame that these women (many were young girls, actually) had experienced,  having been shunned by their communities, where they were often relegated to an outdoor shack because of the odor and  incontinence related to fistulas the were caused by obstructed labor.

A series of paintings that hang in one of the entrance halls to the hospital (signed Dawit B.), tell the typical story of how these women got to this place. I could not help but think of the stations of the cross as the story unfolded, beginning with a very young bride and early pregnancy, during which time her in-laws expect her to do the heavy work like hauling wood, carrying water and grinding grain. Fasting might also be practiced, for all or part of the pregnancy, further compromising health.  Then, if labor is obstructed (small stature places a woman at higher risk) and no medical care is sought, these young women can suffer for 3-9 days, with a still birth the likely outcome in 96% of the cases.  Another common outcome is a hole in the bladder wall (fistula) that can leave the woman incontinent.  Her husband is likely to leave her.  Then his parents send her home to her own family, where she will sleep outside because of the leaking and odor.

There are 9000 new cases of fistula every year in Ethiopia, according to Dr. Gordon Williams, who kindly gave us the tour, and this year 2500 got care through this and affiliated fistula hospitals.  While they can accommodate  4000 patients/year (only enough to meet 1/2 the need) this capacity is not realized because the women who need care are isolated.  They do not know that other women are living with the same problem.  They do not know that there is a cure.   The journey of the “Fistula Pilgrims,” a term that  founders Reg and Catherine Hamlin used to refer to these women who came to them for help, is portrayed in a moving award-winning  documentary called “A Walk to Beautiful” (see trailer at http://www.walktobeautiful.com/) which tells the story of 5 women who make the journey to the Hamlin Fistula Hospital to seek care.

Fistula Patient –photo from Hamlin Fistula Hospital Website

When women arrive at the hospital they are given a clean gown and a brightly colored patchwork blanket that will be theirs to keep.  It provides warmth and comfort, and  later it is a reminder to them to tell others about the care and cure that is possible for women who suffer from obstetric fistulas. These blankets are donated by people who care from a distance all over the world.  I saw women in their beds, in the clean well-lit ward, urine bags in place, patches of color everywhere. They were at rest, comfortable, some smiling, a few reading (either because they are just learning or because they already had rudimentary skills). There is a garden on the grounds, and a “house” where they can go for a traditional coffee ceremony, and also hear taped stories in their own languages (since many speak languages other than Amharic).

Surgery will cure most of these women, but 25% of patients will need to try other strategies or continue to live with the incontinence.  To provide choices for women who can’t go home, the Hospital has also developed a rehabilitation center that includes a farm, a simple restaurant, and other income generating activities.   It was wonderful — and a lesson in what beauty truly is– to witness the healing of  these women, and to see them treated with such dignity and care.

Women with their blankets relax in the Garden at the Hamlin Fistula Hospital (from official website)

Of course I wish I could do more than just walk through the ward, smiling and saying “salaam.”  And thanks to my students I can ! Sweta Shrestha and I made this visit on behalf of our freshman honors global health students, who had learned about fistula and watched “A Walk to Beautiful” as part of a film series that Sweta has been leading for the past year.  The students  wanted to go beyond merely studying the problem — they wanted to do something personal for the women, to send a message of hope and care across the world.   Dr. Williams assured us that blankets and/or financial donations from UW-Madison students would be welcome, and we made sure we got the specs before we left.

For people from the Madison area: the UW-Madison students are organizing a showing of the film Walk to Beautiful  on campus on February 5th, 2012 (time and location TBD — check back here).   We hope to discuss the film, learn more about obstetric fistula, and make some blankets to send to Ethiopia.  There will be materials to work with at the event, but if you knit or crochet feel free to make some squares (10″x10″) in advance and bring them to the film showing.  We will patch things together and deliver them to the Hospital. The brighter the colors the better!   This is another way to celebrate and participate in the Wisconsin without Borders initiative.

More information about obstetric fistula and the Hamlin Fistula Hospital in Addis Ababa can be found at: http://www.hamlinfistula.org/index.html . Also, there is a chapter devoted to this site and work in a book I highly recommend,  Half the Sky, by Nicholas Krustof and Sheryl WuDunn (see Chapter 6: Maternal Mortality: One Woman a Minute, p. 93-102).   Dr. Catherine Hamlin (with John Little) has also written a book entitled, The Hospital by the River: A Story of Hope.  It is a straightforward narration of her life and work, and a very interesting read.

Would you like to go to the ICASA 2011 conference in Ethiopia?  It’s not too late…..

It was such a privilege for me to be at the conference and hear presentations from researchers from around the world.   This post is a gateway to that meeting for my students and readers.  I am providing a summary of some of the bolder plenary remarks, as well as highlights from some sessions that I attended.  Most importantly there is a link that will allow readers to browse the full program and all the presentations.

Challenging words from Stephen Lewis about the Global Fund: Lewis described the decrease in donor funding of the Global Fund as appalling and attributed especially bad behavior to the EU.  Dismissing economic causes, he characterized these decisions as valuing women and children in Europe and North American more than women and children in Africa, favoring fighter jets over human beings, and protecting defense budgets instead of millions of human lives.

Tewodros Melesse was a brave Ethiopian voice for dignity and rights for all:  Melesse emphasized the sexual and reproductive rights of women, children, adolescents and LGBT persons.  Speaking out against stigma and discrimination of all kinds,  he reminded the crowd that  there had to be respect for, and room for, differences of opinion. Melesse words were appreciated by many, especially session co-chair, Miriam Were of Kenya, who dubbed him an honorary woman for his advocacy and willingness to speak out.

The conference papers addressed HIV prevention, testing, treatment(s), co-infection (especially TB), prevention of mother to child transmission, and challenges in reaching and caring for highly vulnerable populations.  Participants reported on many aspects of the diverse and complex epidemic, which Peter Piot described as many epidemics, rather than one.  Researchers presented evidence about the feasibility of lifelong ARV care, male circumcision, microbicides, and care for discordant couples.  I chose to attend sessions that focused on health systems and multi-sector approaches, since that is the emphasis of the Global Health Institute at the University of Wisconsin-Madison.

From ICASA presentation by Fana Abay for Enda-Ethiopia

HIV and Agriculture:  This session, entitled promoting livelihoods for HIV/AIDS affected communities, featured rigorous research, much of it in Ethiopia, related to sustainable agriculture and economic empowerment.  Since I come from a community where local food and urban gardens and farmers markets have gained a lot of attention, I felt at home as I heard about strategies for urban populations that included bio-intensive gardening and small-scale dairy efforts through south-based NGOs.  This study documented improved CD4 counts!  A second study, which reported improved nutritional status, focused on low input gardens and local food production that increased access to eggs, vegetables, and beans. Another study explored the relationship between HIV status and land use, finding that 43% of HIV affected households have lands that they are not able to cultivate.  Strategies that address basic food security alleviate hunger, and they do so much more.  They can enhance the effectiveness of treatment, enable HIV positive persons to be strong enough to work their land, and they can contribute to reduction in transmission by reducing the incidence of transactional sex (girls having sex for money because they are desperate for food).  Community-based HIV efforts are increasingly  going beyond health care services to address hunger.

HIV and Non-Communicable Diseases (NCDs):  There has been much talk in the last few years that vertical programs like those that address HIV/AIDS could  contribute to overall health system strengthening, because of overflow benefits, such as the development of general clinical and management skills,  and the potential for more rapid horizontal integration of services. This session made the case that drug supply and quality assurance systems developed for ARVs could make it easier to develop similar systems for NCDs.  While insulin and asthma inhalers are expensive, many of the drugs needed to treat NCDs are affordable.  Presenters also stated that the MDGs neglect non-communicable diseases — and HIV care and monitoring fail to use the opportunity to detect NCDs, even thought HIV treatment likely increases susceptibility to some NCDs. With modest adaptations, HIV testing facilities could be adapted to test for diabetes, cholesterol, and BMI, and early diagnosis in the context of HIV care and monitoring would be possible.  Presenters also made the case that the trajectory of HIV care was similar to care for people living with NCDs. There is a similar focus on early diagnosis, continuity and multi-disciplinary, family centered care, as well as referral, self-management, and community linkages.  Therefore, the headway made in HIV care could be leveraged for more rapid and effective scale-up of care for non-communicable conditions.

http://www.icasa2011addis.org/media-center/presentations

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Zero new infections, Zero AIDS-related deaths, and Zero discrimination.  On December 1st, World AIDS Day, while these goals were being explicitly discussed in various fora around the world,  I was in a hospital in Addis Ababa working with colleagues from Ethiopia and Tanzania to develop plans to improve healthcare quality.  We mentioned World AIDS Day, but we spent most of the time talking about concrete changes we could make for trauma patients in local hospitals, for clients in local health centers who need HIV testing, for patients who need pain relief.  For me, working for tangible change against the backdrop of big inspiring ideas, was the perfect way to mark the day.

A few days later I found myself engaged in a different way.    I headed down Bole Road in Addis Ababa toward the 16th Annual Conference on AIDS and STIs in Africa (ICASA 2011), part of a throng of 1o,000 people who all, in one way or another, were part of the fight against AIDS.  Today we were coming together to share 1000 scientific papers and 175 workshops, and to imagine how to create an AIDS free generation.  We would be celebrating the successes of the last 10 years, including the facts that 32 countries have stabilized the epidemic,  22 countries have reduced new infections by >25%, and countries like Botswana are leading the way with universal access to care and virtual elimination of mother to child transmission of AIDS.  Kenya is leading in important ways also, with the establishment of tribunals to assure rights and address stigma and discrimination.

We followed the sound of drums emanating from the main hall of the Millennium Conference Center, where many political and public health leaders were on the agenda.  In the final hours before the event it was rumored that former President  George Bush would be making an appearance…

… and he did.  Acknowledged for his courage as a first responder to the call for care for people with AIDS,  and praised for the establishment of PEPFAR,  a program which (in spite of its imperfections) has dramatically changed the landscape for people with AIDS,  George Bush was greeted with a standing ovation by the predominantly African crowd.

Did I stand up myself you may be wondering?  Well, first I should disclose the I am a life-long Democrat.  I consider myself open-minded and I care most about integrity and competence. I would vote Republican if the right candidate came along..but my bi-partisan credentials are weak.  I have never actually pushed the button….

I should also say that I am kind of  persnickety about standing ovations.   I think they should be rare, and I save them for near perfect performance.  The abstinence only campaign was definitely a wrong note that I could not overlook….

When Bush took the podium, and nearly everyone stood up, those who did not kept their hands in their laps, looking incredulous, uncomfortable, or just plain still.  There was a lone shout of “what about Iraq.”  I myself stayed seated.  As I listened to Bush from the audience I was a bit surprised by what I heard.  “In order to advance as a society we must focus on the needs of women.”   “We can’t retreat from the need in the world.”  “Isolationism is always a mistake.”  “Even when economic times are difficult we have to stand against human suffering and make saving lives a priority.”  A cynical voice in my head asked if Bush would be willing to go on tour in the US with these messages. But the mood in the room told me that this was bigger than partisan politics. Bush was saying the right things, and he was not triumphal.  He gave credit to both parties for what the US began in 2003 and continues to do under the Obama administration.  He went on to describe the new pink ribbon/red ribbon campaign, a global effort to use the capacities developed in the fight against AIDS to address cervical cancer, which can be detected easily, and if caught early, can often be treated in a clinical setting with a very simply procedure.  It is interesting to me (though really not surprising!)  that all the ex-presidents, in one way another, have discovered that global health is the thing that really matters.

I felt  privileged to be part of this assembly, moved by what those in the room had accomplished, by what PEPFAR (and other efforts!) had meant for people living with AIDS, and even by Bush himself.  At the end of his remarks people rose again.  Yes, I remained seated, but I clapped my hands until the end, until they tingled a bit, and I meant it.