WFH NETWORK

WFH Humanitarian Aid Program: Supporting the dream of corrective surgery for patients in India

The availability of clotting factor concentrates (CFC) treatment is critical when it comes to the level of care a medical establishment can provide for hemophilia patients. Typically, when there is a small amount of CFCs available, care is restricted to treating acute bleeds. It’s only when supplies are more plentiful that physicians can begin to perform the kind of corrective surgeries which can have a lasting impact on patients.

For the Hemophilia Day Care Centre of Mumbai, the turning point from treating acute bleeds to performing corrective surgeries really began in 2016, when the facility began receiving donated factor product from the World Federation of Hemophilia (WFH) Humanitarian Aid Program. The donations had an immediate impact on the quality of care, and as word spread of the availability of factor, more patients began going to the facility in search of treatment. It became apparent that treatment options that had been out-of-reach before, such as corrective surgery, were now a possibility.

“WFH humanitarian aid is helping us… to do a lot of surgeries which were unthinkable for us until now,” explains, Vikash Goyal, President of Haemophilia Federation of India, “[So far], we’ve been able to do 150 to 200 surgeries.” The Hemophilia Day Care Centre of Mumbai has also been able to perform over 100 dental procedures since 2016. Not only is the sheer volume of surgeries a big step forward for the facility, but the variety of performed surgeries is also important, because it has allowed doctors to broaden their experience, become better at their jobs, and consequently, provide better care for patients.

In one case, a young boy from Pune was severely hurt while playing with other children, suffering almost complete paralysis of his four limbs. When he arrived at the Hemophilia Day Care Centre of Mumbai, he was very weak and had not eaten anything for 48 hours. The availability of WFH Humanitarian Aid donated factor made it possible to perform corrective surgery on the child, and six weeks after surgery and physiotherapy, he was able to walk again.

In another case, a young man faced the prospect of amputation because of a pseudotumour in his knee. Understandably, he was extremely concerned at the prospect. “[I thought] if I didn’t have a leg I wouldn’t have a life,” he explained. “My life would become useless.” A serious concern for the man was being able to support his family, including his father. Fortunately, the surgery was successful, and he is now able to walk, work and be a productive member of society. “[After the surgery, the] pain and bleeding is much reduced,” he said. “Now I want to live and am happy to live.”

The effect of WFH Humanitarian Aid Program on the life of patients has been nothing short of transformative. When asked how many surgeries would have been done without donated factor, Vikash Goyal’s response was the following: “Without batting an eyelid: not even 10% [of what we can do now].”

Every physician, nurse, and employee working with the bleeding disorders community is  very conscious of the importance of properly tracking usage to ensure that donated factor is used as effectively as possible. Shashikant Apte, MD, Vice President Medical of the Hemophilia Federation of India explains: “It is extremely crucial that we document how the factor was used… This is someone’s donation. We are answerable to them.”

The stories of surgical successes in India, powerful government support initiatives in Armenia and the work being done towards accurate diagnosis in Indonesia, and those affected, are featured in a series of videos available at www.treatmentforall.org.

CONTRIBUTORS

The visionary contribution from Bioverativ and Sobi to the WFH Humanitarian Aid Program translates into 500 million IUs over five years (2015-2020). Bioverativ and Sobi also make ongoing substantial financial contributions to support the logistics of product delivery and training of providers and patients in humanitarian aid countries. Furthermore, the eight-year commitment (2014-2021) from Grifols totaling 200 million IUs, along with a ten-year commitment (2009-2018) from CSL Behring for a total of 22 million IUs, and the three-year agreement (2017-2019) with Green Cross for 6 million IUs, allows for a more predictable and sustainable flow of humanitarian aid donations to the global community.

To hear from those who benefit from the WFH Humanitarian Aid Program and to learn more about the importance of outreach and identification, visit treatmentforall.org.