Prior to the WFH Hemophilia Organization Twinning (HOT) Program partnership with the Hemophilia Ontario of the Canadian Hemophilia Society, patients of the Haemophilia Society of Tanzania (HST) relied on the use of fresh frozen plasma for treatment regardless of their bleeding disorder. This situation meant that the Tanzania – Ontario Twinning program had an opportunity to make a significant difference in Tanzania’s bleeding disorders community by facilitating the provision of factor concentrates.
Prior to the WFH Hemophilia Organization Twinning (HOT) Program partnership with the Hemophilia Ontario of the Canadian Hemophilia Society, patients of the Haemophilia Society of Tanzania (HST) relied on the use of fresh frozen plasma for treatment regardless of their bleeding disorder. This situation meant that the Tanzania – Ontario Twinning program had an opportunity to make a significant difference in Tanzania’s bleeding disorders community by facilitating the provision of factor concentrates. One of the first steps of the Twinning Program for Tanzania was the HST 2016 Board training that focused on building the organization’s capacity for support, education, and advocacy. This was done through a review of the HST’s organizational structure, a review of the roles of the office bearers, a discussion on the importance of succession planning, and a look at suggested ways to build their membership. The education and support needs of patients and their families were also part of the discussion. Once these issues were looked at, an action plan was developed for 2017.
Twinning can make a huge difference in the care and treatment of patients—and the experience of the HST was no exception. Two very significant medical developments that the twinning of Tanzania-Ontario helped realize were the provision of factor concentrates—made available in Tanzania through the WFH Humanitarian Aid Program—and the greater availability of diagnosis in-country. Accurate diagnosis of hemophilia in their patient population, not previously available in Tanzania, is now done at the Muhimbili National Hospital in Dar Es Salaam. This hospital now acts as Tanzania’s hemophilia treatment centre. Approximately 100 patients are now registered with this centre, and the number continues to grow.
Another major accomplishment realized in 2016 by the Tanzania-Ontario twinning partnership was the first ever Medical Symposium sponsored by the Hemophilia Western Pennsylvania Hemophilia Treatment Centre and the Muhimbili National Hospital. The HOT Twinning partners were instrumental in facilitating this educational event. With 71 participants, representing hospitals from 10 regions, the event provided an excellent beginning for the development of a network of treaters across the country.
One of the most exciting developments in 2016 for the HST was the formation of a support group for parents and youth using the free phone application called “WhatsApp”. Approximately 30 members participate in this group; providing support to each other, and sharing their experiences with one another by phone. This endeavour has greatly facilitated a supportive communication strategy in the community.
In addition, the HST has been able to provide a number of educational opportunities to the local bleeding disorders community. In 2016, a group of 20 mothers met for a day to receive educational presentations on many topics including information on genetically inherited diseases and counselling, how to organize small groups, and suggested ways to generate additional income to help with providing food for their families.
In this final year of the twinning partnership, the main focus will be on developing a plan for a sustainable future so that the HST can continue to meet the needs of its members over time. The HST will also work to advocate for improved care and treatment in major centres across the country, support the possible purchase of limited factor by the government, work to encourage the government to reclassify hemophilia as a chronic condition to reduce costs for patients and their families, and pursue accreditation as a full member of the WFH.
Everyone who is part of the Tanzania – Ontario HOT twinning partnership was very pleased to be selected as WFH Twins of the Year for 2016. Our thanks go to all who have supported this ambitious endeavor over the years.