Safe blood and blood products are essential for people with bleeding disorders. Throughout their lives, people with bleeding disorders may depend on blood clotting factor products to supply a missing protein needed for their blood to clot normally.
Improvements in blood safety and better treatments have made blood and blood products much safer since the 1980s. After the national tragedy of the HIV/AIDS crisis in the bleeding disorders community, NBDF became an advocate for safer blood and blood products. NBDF continues to advocate for the bleeding disorders community and remains committed to blood product safety.
This section of blood safety and community counts covers the following:
Ongoing Monitoring and Community Counts
History of Blood Safety
Your blood contains proteins, called clotting factors, that help you stop bleeding. The clotting factors needed to replace the missing, low, or malfunctioning proteins in your blood may come from human blood plasma. The replacement clotting factors that come from human blood are called plasma-derived products. To make plasma-derived products, the missing clotting proteins are taken from donated blood. The clotting proteins are freeze dried and turned into a powder. The powder is mixed with sterile water and injected into your vein.
While plasma-derived products are now very safe, this was not always the case. During the 1980s, the U.S. blood supply became contaminated with HIV. For those who relied on plasma-derived products the contaminated blood supply proved catastrophic. The contaminated factor products also spread the hepatitis C virus (HCV). Before testing for HCV began in 1992, about 44% of all people with hemophilia contracted HCV.
Since the tragedy in the 1980s, new rules have improved blood safety and resulted in safer, more effective products. The new regulations included strict screening of blood donors, laboratory tests that detect viruses in the blood, quality control measures, and viral inactivation and manufacturing processes.1 These safety regulations removed the risk of HIV, hepatitis B, and hepatitis C transmission.
Along with improving safety in the blood supply, there are now other factor treatments available that do not rely on human plasma. Recombinant clotting factor products are examples of new treatments. They differ from plasma-derived products in two ways. These treatments are either completely free of human plasma or use tiny amounts of pasteurized human serum albumin for cell culture or as a stabilizer. Pasteurized human serum albumin has a 50-year safety record of no viral transmission.
Ongoing Monitoring and Community Counts
In addition to blood safety measures, from 1998 to 2011 the Centers for Disease Control and Prevention (CDC) with federally funded Hemophilia Treatment Centers (HTCs), created the Universal Data Collection Project (UDC). By gathering information from people with bleeding disorders, the UDC could monitor blood safety and contribute to increased knowledge about issues affecting the bleeding disorders community.
When the UDC ended, the CDC continued the work of health surveillance with Community Counts. The Community Counts project monitors and collects data from people with bleeding disorders to share information that benefits the bleeding disorders community. You can join Community Counts if you have hemophilia, von Willebrand disease, or specific rare factor deficiencies or rare platelet disorders.
If you want more information about safer blood and blood products, please go to Blood and Blood Product Safety.
Joining Community Counts
If you are enrolled in Community Counts, the information you provide can help advance the care of people with bleeding disorders. With the data gathered from the bleeding disorders community, there is a greater potential to advance care and treatment. The information collected by Community Counts may include your demographic information, the types of medicine or treatment you use, if you have other medical issues, and if you have had any bleeds.
Here are some other reasons to join Community Counts:
It’s confidential, and you are given an identification number instead of providing your name
There’s no cost for the tests
It protects you and other members of the community from potential blood safety threats
It improves care for current and future generations through research discoveries
It helps identify and prioritize issues for further study
If you want more information about Community Counts, please go to Community Counts.
1. Friedman, L. I., & Stromberg, R. R. (1993). Viral inactivation and reduction in cellular blood products. Revue Française De Transfusion Et D'Hémobiologie, 36(1), 83–91. https://doi.org/10.1016/s1140-4639(05)80170-4