When the US went through in the 1970s and 80s what is now called the “Hemophilia Holocaust,” up to 10,000 patients with hemophilia died. Donated blood that was infected with HIV and hepatitis C was never tested for viruses back then. Thanks to the advocacy of the patient community, along with the help of some doctors, the nation’s blood supply was destroyed and advanced testing and safety procedures were instituted. This tragedy also led to the creation of recombinant blood-clotting products, that are not made from human plasma. The result is that HIV and hepatitis C are no longer transmitted through blood-clotting products.
So to read that 40% of hemophilia patients tested positive for hepatitis B and C and 2% for HIV during a recent mass screening was both disheartening and shocking. It happened in Karachi, Pakistan, a city I’ve been to many times, specifically to visit the hemophilia patients and advocacy groups. I had thought they had come a long way since my first visit there in 1999. Pakistan has the sixth largest population on earth, and so probably has the sixth largest hemophilia population. These results are shocking.
Even though Pakistan receives donations of recombinant factor from overseas, there just isn’t enough for everyone. Some patients must resort to using cryo from blood banks, and are at risk of contracting blood-borne viruses.
Fortunately, all 242 patients who tested positive were given the first dose of hepatitis B treatment. At least that’s something.
The local advocacy group is requesting the Government of Sindh (of which Karachi is a part) for further testing and to ensure provision of anti-hemophilia injections at Hemophilia Welfare Society-Karachi treatment center.
While the developed countries look forward to more advanced ways to deliver factor VIII, including gene therapy, most hemophilia patients around the world struggle to get any care, whether cryo or recombinant. Each month I ship out little packets of factor to patients in all corners of the earth. It seems a drop i a vast ocean, but at least it’s something. We need to support the national and local advocacy groups worldwide to carry on the fight that we once engaged in, not too long ago.