It’s all about “Twinning:” Dr. Barbara Konkle shares her experience with World Federation of Hemophilia in Botswana
As Puget Sound Blood Center’s Hemophilia Care Program congratulates the World Federation of Hemophilia (WFH) on 50 years of “advancing treatment for all,” our clinical team recognizes the amazing contributions that WFH has done through their Twinning Program.
WFH established this innovative framework 15 years ago: hemophilia organizations or treatment centers engage in a two-way partnership to share information, expertise and experience. This program has made it possible for governments in less economically developed countries to purchase factor concentrates and increase access to hemophilia care for their patients.
Our Hemophilia Care Program’s Dr. Barbara Konkle participated in WFH’s Twinning program and shares her experience below. Dr. Konkle joined Puget Sound Blood Center in 2009 and was previously a Professor of Medicine and of Pathology and Laboratory Medicine at the University of Pennsylvania. She directed the hemophilia care programs at Thomas Jefferson University and the University of Pennsylvania.
Where did you go?
At the University of Pennsylvania the twinning experience was different from others because they had an expanding program that not only served Hemophilia patients, but also patients with HIV living in Botswana. I contacted WFH expressing my interest, as well as a contact from Botswana, reached out to WHF and that’s how we got paired. The experience was also unique because they had a really good team that had a universal education and were fluent in English.
How many people from your team participated in this program?
We had a pediatric hemophilia nurse, a physical therapist, a social worker and a physician.
What was your Center’s commitment?
We supplied the personnel to educate the clinical staff from Botswana. South Africa had a more developed hemophilia program compared to other countries. That’s why our focus was to help them develop the right structure and bring recognition to hemophilia care through their centralized healthcare system that could provide treatment for all.
Did you bring supplies?
Our team didn’t bring supplies because they were provided by the government of Botswana. The Republic of Botswana is a relatively wealthy country that grows their own natural resources. The government was able to purchase clotting factor for the country.
Did you go more than once?
We visited Botswana three times. Our team had the opportunity to go to Francistown, which is the second largest city and to Princess Marina. Our team supported their outreach clinics.
Was this a worthwhile experience?
Yes it was. We had a wonderful time and appreciated the help from Dr. Haruna Jibril who was the pediatric hematologist at Princess Marina Hospital, Botswana Baylor Children’s Clinical Centre. He supported us starting the children on prophylaxis. Our team made a difference with their outreach program and collaborated on HIV care to pregnant women. We trained the nursing staff to infuse patients as well as conducted home infusion classes for patients. Previously, only the physicians could infuse patients.
Another great accomplishment was to have the hospital agree that children that have bleeds could go see their hematologist instead of going to the ER. Also, the patients who were already diagnosed could obtain their factor when needed instead of waiting to get their factor levels tested every time they had a bleed. Our twinning activities in 2008 were recognized by the World Federation of Hemophilia (WFH) and we won Twin of the Year Award in July 2009.
Would you recommend this program to other HTC’s? What preparation is needed?
Definitely! The challenges are trying to find the funds and donations that can help the team establish a time to go, and identify the resources that are needed to serve a less developed country. You need to start with an assessment to see if it will work. Our situation was unique because the staff in Botswana had an amazing team of experts that were fluent in English. We also had an existing partnership with the Government of Botswana and the University of Botswana. Their government supplied clotting factor for the patients.