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FDA’s Completed Revision of MSM Donor Deferral Policy

Background The Food & Drug Administration (FDA) is responsible for recommending policies and making rules regarding the donation of blood and blood products. During the 1980s, when it became clear that transmission of Acquired Immune Deficiency Syndrome (AIDS) happened through blood, the FDA began recommending multiple policies that would decrease the risk of transmission of […]

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Dear Addy: Why Are Medical Alert IDs Important?

Dear Addy, Several parents that I’ve met at the HTC have recommended I should get my daughter a medical ID bracelet. Why is this so important? Are there resources available to help me get her one? Signed Inquiring About IDs Dear Inquiring, For patients with serious medical conditions like a bleeding disorder, it’s important that […]

Health Plans’ Coverage Of Some Drugs Can Be A Source Of Consumer Confusion

Note: The following story was originally published by Kaiser Health News. By Julie Appleby Patients getting chemotherapy or other complex medications may have a sudden panic when shopping for health insurance: Their drugs often don’t appear to be covered. “People think, ‘Jeez, what do I do now?’” said Anna Howard, policy principal at the American […]

Advocacy News

New Patient Advocacy Coalition Leads the ‘Next Generation of Health Care Reform’

HFA recently became a charter member of Partners for Better Care (PBC), a nonpartisan coalition of patients and patient groups that seeks to improve access to quality medical care. The following is a press release from PBC about this partnership. Patient advocacy groups announced on Thursday, December 3, the launch of Partners for Better Care (PBC), a nonpartisan coalition beginning with over 10 […]

2015 Summer Intern Recap

Earlier this summer we welcomed our summer policy & advocacy interns to our DC office. Adam and Matthew are part of the bleeding disorders community and were chosen to participate in a 10-week internship because of their leadership qualities and interest in the field of policy and advocacy. Throughout the summer, Adam and Matthew: Gained […]

Dear Addy

Dear Addy: CHOICE

Dear Addy, I keep seeing all of these Facebook posts and Tweets about the CHOICE Project. What is it and why does it matter if I take part? Signed, Need-to-Know Dear Need-to-Know, Glad you asked. CHOICE (Community Having Opportunity to Influence Care Equity) is a project driven by HFA and supported by the Centers for […]

HFA Interns Tour Maryland Plasma Center

Earlier this summer, we introduced you to Adam and Matthew, our summer Policy Interns. These two have been busy all over DC, attending Congressional hearings, Executive briefings, and much more. Last week, Matthew and Adam had the opportunity to tour Grifol’s plasma collection center in Frederick, MD. Centers like this collected plasma from donors, returning the […]

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HFA Patient Fly-In: Through Our Interns’ Eyes

Earlier this summer, we introduced you to Adam and Matthew, our summer Policy Interns. These two have been busy all over DC, attending Congressional hearings, Executive briefings, and much more. Recently, they got to experience first-hand the planning and execution of our 2nd Annual Patient Fly-In. Below is their take on the week, and a bonus […]

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Supreme Court Upholds ACA Subsidies

We’re pleased today to learn that the Supreme Court of the United States, in a 6-3 decision, upheld the subsidies provided under the Patient Protection and Affordable Care Act (ACA). These tax subsidies have allowed so many in our community to afford the care they need to treat their ‪bleeding disorders, and we are confident that these […]

HFA Champion Award Given to 4 Members of Congress

On June 17, 2015, we hosted our 2nd Annual Patient Fly-In in Washington, DC alongside an online Virtual Hill Day to gain support for bill HR 1600, The Patients’ Access to Treatment Act in the US House and Senate, and other issues like the ability for third-party non-profits to help make payments on behalf of patients, and improving access to skilled […]

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Assisting and Advocating for the Bleeding Disorders Community