To the Bleeding Disorders Community,
As a legacy leader in this community, especially during the tumultuous years (1990-1995) where this community united to take on the US government, pharmaceutical companies, and blood collection businesses, for the sake of blood safety, I am very concerned that we stay vigilant and protect the advocacy work we sacrificed to achieve.
Our advocacy legacy as the bleeding disorders community is achieving something that no other community has been able to achieve in history……Blood Safety in the United States. This came with the needless sacrifice of lives. Our unified advocacy achieved better processes of blood collection screening, testing, quarantining, smaller pool size collecting, better processes for recalls, implementation of a national notification process, safer infusion products, and even the development of non blood-derived infusing products. We also achieved the largest government compensation settlement in history with the passage and funding of the Ricky Ray Hemophilia Relief Fund Act.
The Act also called for accountability for the government’s lack of oversight of public health responsibility and gave this community a semblance of justice. This is our community’s awesome legacy. Many born into the last few decades have a better life because of this community’s advocacy.
Let’s build upon our reputable legacy and work together to help our government understand the healthcare needs of our community. Please take time to work with all of our organizations to reach out to legislators with our priority issues.
Let’s not rest on our accomplishments, but let’s remind our government of our mighty and caring advocacy concerns.
Let our voices be heard in a respectful and positive way. Email or call your chapters, organizations, and associations. Enroll in their advocacy lists and learn how your collective voices can be heard.
In Memory and in Respect of Past and Present Legacy Advocates.
Still Doing What I Can,
Dana Kuhn, Ph.D.
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