Twinning is Winning in Botswana
“The most rewarding professional experience I’ve ever had. It was an amazing opportunity.”
That’s how World Federation of Hemophilia (WFH) volunteer, Susan Cutter, describes her experiences with medical staff and hemophilia patients in southern Africa.
The Philadelphia-based social worker is assistant director of the Penn Hemophilia and Thrombosis Program, University of Pennsylvania Medical Center. Since 2003, she has coordinated the WFH twinning partnership involving her center and the Princess Marina Hospital in Botswana’s capital, Gaborone.
“When our team first arrived in Botswana, the conditions reminded me of what care was like in the U.S. before I started working in hemophilia 20 years ago,” she says. “Many doctors knew little about the disorder, factor was not readily available, severe joint damage was common and few older patients survived.”
Hemophilia diagnosis, treatment and care have since expanded dramatically in Botswana. Access to factor has increased and nurses around the country now perform infusions.
Susan attributes many of these achievements to Haruna Jibril, Princess Marina’s pediatric hematologist. “Our first project in 2003 was to organize symposiums in Gaborone on medical, nursing, psychosocial and physical therapy issues. Dr. Jibril did a great job inviting people from all over the community and creating interest. He’s also a dedicated champion for patients and advocates at government levels to improve hemophilia treatment.”
After 2003, more twinning visits followed. Two years later, Susan returned to Botswana with a Penn team that comprised a physician, social worker, and physical therapist as well as a nurse from the Children’s Hospital of Philadelphia. This time they conducted another multi-disciplinary symposium in Francistown and travelled to a rural clinic to further hemophilia education and outreach efforts.
“All our symposiums showed nurses in Botswana how to infuse factor. They then started teaching others,” says Susan. “And that’s how the knowledge spread. The country’s nurses are now major care providers for hemophilia patients.”
The adventurous team went further off the beaten track in 2008. “One remote village we visited has no cars,” says Susan. “All travel is by foot or donkey. Dr. Jibril chose the location because it has an unusually high incidence of hemophilia. After learning of several hemophilia-related deaths, owing to lack of access to care and treatment, he began an outreach effort. The village now has a clinic with a trained nurse who administers prophylactic factor infusions.”
As part of the Twinning Program, Haruna and a colleague came to Philadelphia for training in 2005. The Penn center has also supported its twinning partner’s outreach work by donating medical publications and other resources including a laptop and projector.
“Everybody is dedicated to collaboration and participation,” says Susan. “We know we can learn from each other.”
Despite the economic and cultural differences between the U.S. and Botswana, one lesson learned is that hemophilia patients and their families face universal issues.
“The challenges are the same regardless of where you live,” says Susan. “Coping with a child diagnosed with hemophilia; access to factor and care; dealing with complications such as inhibitors; school and work issues; participating in sports. With hemophilia, we speak the same language all over the world.”
With a population of 1.8 million, in 2003, Botswana had one of the world’s highest rates of HIV infection. Therefore the improvement in hemophilia treatment is an amazing achievement given the competing demands on hemophilia resources. Susan attributes the success to a combination of reasons.
“Botswana is a democratic nation with a more stable political system and economy than some other developing countries. The government emphasizes public health, while the people themselves are friendly, open and respectful of one another. Although the Twinning agreement is formally ending after five years, the relationship between our centers will continue.”
Susan is also proud of her involvement in a 2005 project with South African nursing sister, Mirriam Mokwena, who was also a long-standing WFH volunteer.
In response to Mirriam’s request, Susan and US colleague Dawn von Mayrhauser developed and conducted psychosocial care symposiums in Johannesburg and Capetown for social workers interested in hemophilia. The well-attended gatherings fostered social work involvement in South Africa’s hemophilia care system.
Such experiences have inspired Susan to join the WFH Psychosocial Committee, where she shares her knowledge with other volunteers from around the world.
“I feel very fortunate to have worked with such a great team,” she says. “It’s been a gift to have had those experiences.”
To view the latest Twinning videos, click here.
For more information on the WFH’s Twinning program, please visit www.wfh.org.
The WFH is grateful for the support of Wyeth, now a part of Pfizer, to the WFH Twinning Program.
November 2009 |
