South Africa: Self-Advocacy at Work!

Reeshen Pilay of South Africa

I returned from a three-week visit to the United Kingdom just Saturday night. A visit to Yeovil, England first, to visit my dear friend Bill Boughton, who just turned 95! I try to visit him every year or two. How do I know him? You can read about him here!

Then off to Shetland, Scotland, to visit another dear friend, Jan Howard. I wrote about my visit there on May 20.

Then off to the World Federation of Hemophilia Congress in Glasgow! I attended quite a few sessions and had many meetings. All were interesting and worthwhile. Last week I wrote about the State of the World address by WFH president Alain Weill.

But one of the best sessions was by a young man with hemophilia from South Africa. Reeshen Pilay has severe hemophilia A, and for 11 years used cryo, which carries the risk of blood borne diseases. Now 25, he has been using plasma concentrates. His remarkable presentation was on self-advocacy, and how he was able to get the government of South Africa to approve his special request for recombinant products. Imagine having to self-advocate for that, something that is the accepted standard in the US.

A driving force behind this was simple: his veins could not withstand the huge diluent volume for each infusion. He wanted a product with smaller diluent size, for a faster infusion and less wear and tear on his veins. He got to work.

He learned that in South Africa, a staggering 97% use plasma-derived factor concentrate. It would be difficult to get the country’s health care system to accept his proposal to use a recombinant.

He knew he needed to present facts, not just rhetoric to the socialized health care system of this African nation. So he used the WFH eLearning platform. I was intrigued to know what he did and how he did it. First, he connected to the WFH Online Registry of Products. He learned that the way the WFH calculates how much factor is needed in any country is to set a minimum standard of 1 IU per capita, that is, 1 IU per person. According to the WFH’s Annual Global Survey 2016, a survey of 91 countries showed an average factor VIII usage of .82 IU per capita.  

From the WFH Annual Global Survey 2016

He did incredible research, leaving the audience fairly stunned! He found out which product used the smallest diluent. Reeshan had difficulty with the large volumes used by the plasma-derived product provided by the government. After finding the product with the smallest diluent, he then found where his country stood via others by IU/capita. It uses slightly more than 1 IU factor VIII per capita. (In the US, we use a whopping 9.5 IU per capita)  Then, he calculated how he could actually save money by using the smaller diluent size (which also happened to be an extended half-life product), improve his lifestyle and save his veins.

He presented his findings in a PowerPoint presentation to the health care system managers, won their attention and admiration and secured their approval.

He surely won our admiration for his persistence, and for his rational, economic approach to a huge obstacle!

Be sure to check out the WFH’s eLearning platform, which is filled with excellent webinars, booklets to download, slide shows and more.

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