Page 15 - HFA Dateline 2017 Q1 Spring

March is Bleeding Disorders

Awareness Month

t was February 21, 1986 when President Ronald Reagan released Proclamation 5442, de-
Iclaring March as National Hemophilia Month. That national attention came at a time
when our community needed it most, given the turmoil that we were experiencing in the
80s. In 1982, the CDC reported the first cases of HIV/AIDS among people with hemophilia.
By mid-1983, researchers isolated the virus that causes AIDS and manufacturers of plasma-
derived clotting factor concentrates began attempts to kill the virus with dry heat, solvent
detergent treatment, and pasteurization, with varying degrees of success. Manufacturers
licensed and began developing heat-treated products, but because of high cost, perceived
risk, and questions over efficacy, these were not widely available. Many in our community
were isolated and ostracized because of public anxiety and ignorance related to HIV/AIDS,
and their own fear of being stigmatized. Children, most notably Ryan White and the Ray
brothers, were denied entry to school because of their diagnoses. By the late 1980s, over
50% of the hemophilia community had been infected with HIV/AIDS and/or hepatitis C;
in those with severe hemophilia, the infection rate was over 90%. The decades-old concern
over hepatitis was now far overshadowed by the HIV/AIDS epidemic.
Since then we’ve seen many changes throughout our community. HIV and AIDS is now
treated as a chronic condition rather than an acute, always fatal disease. We’ve learned a lot
about bleeding disorders in the past 25-30 years as well, as medical research teams invest
time and money into focusing on them. While President Reagan’s address stated that he-
mophilia “is almost exclusively a male disease,” we now know that women can and do have
bleeding disorders. The number of products on the market has grown as more pharmaceu-
tical companies invest in treatments for bleeding disorders.

Since 1986, we’ve celebrated National Hemophilia Awareness Month. But, last March, along
with our Member Organizations across the country, we recognized the first-ever Bleeding
Disorders Awareness Month in an effort to shine a light on the many bleeding disorders, in
addition to hemophilia, that impact our community. Last year, during the month of March,
you helped us recognize the resilience of our community by sharing our fact-a-day social
media campaign, updating your Facebook and Twitter profile images with our support
ribbon, passing out our educational cards, and hosting fundraisers! With your help, we
reached an astounding 800,000 people in 2016!

We encourage you to spread the word about this year’s Bleeding Disorders Awareness
Month by taking part in our campaign this year. On the following pages you’ll find an
advocacy calendar loaded with ideas on how you can advocate for yourself and your
family. And each day during the month we’ll be posting facts on our social media channels
to educate and inspire. We hope you’ll share these posts with your friends and families.
Can we beat last year’s 800,000 people reached?
Yes, we believe we can!

Spring 2017 | Dateline Federation 15