Advocates Share Their Stories: Albany Days and Washington Days
Every year, we take families and individuals up to Albany, NY as a part of the New York State Bleeding Disorders Coalition’s Albany Days and down to Washington, D.C. as part of NHF’s Washington Days Advocacy Event. While there, we speak with legislators about the laws that directly impact the bleeding disorders community. Advocates share their stories with their representatives as family members, patients, and friends of what living with a bleeding disorder is really like. Below, we’ve profiled some first-time advocates who have recently returned from Albany, NY and Washington, D.C. to tell you why they speak out for the bleeding disorders community.
“NYCHC partnered with NYSBDC for another great Albany Days. As patient advocates, we once again lobbied to to ensure we have access to our life saving medications, which includes access to a pharmacy option which best meets the needs of the individual patient. This year, we also helped introduce a new bill to ensure patients have timely and continuous access to treatment and medications. This new bill creates a time-sensitive, medically based standards for the prior authorization of medicines and treatments. Additionally, it gives medical professionals more time to work with patients by lessening the burden of duplicative paperwork. These bills will protect all patients, not just in the bleeding disorders community, and ensure they have access pharmacy choice that best fits their needs as well as timely and stable access to their medications and treatments. Together, we will continue to improve patient care in New York State.” ~ Kim Spalter