Advocates Share Their Stories: Albany Days and Washington Days

 In Advocacy, Bleeding Disorders Awareness Month, News, NYCHC Events, Teens / Young Adults, VWD, Women

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.

Albany Days

“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 S.

Washington Days

“My overall experience as a first-timer was priceless. I was nervous when I decided to attend this event because just like in my daily life, I was not sure how someone in politics could understand how living with a bleeding disorder could be challenging. I knew ahead of time there would be training before proceeded out to the Hill.  We were all given red ties to wear for Bleeding Disorders Awareness Month. While at dinner you could hear the passion in the stories that were told along with the presentations on how to approach our senators. The statistics provided shed light on the fight we were ready to stand behind. The very next morning during breakfast we had another meeting just before we headed out into the field to ensure we were all properly equipped. I had the opportunity to meet with my senator, Lee Zeldin. Our visit was short (he was running to a vote), but we spoke with his legislative assistant, Matthew also, so we made sure to explain to him how living with von Willebrand Disease has affected my daily life routine; I even infused in his office. I honestly wish he had more time to speak with us, since he previously has voted to repeal the ACA, but we left our business cards and I intend to keep in touch. I was able to confidently speak about my von Willebrand’s, and even spoke alongside a young man with vWD from upstate at our meeting with Chuck Schumer’s legislative assistants.With the support of everyone who attended this event and the information that I have gained I have the confidence to spread the word fight for RED! I plan on attending Washington Days for many years to come. Thank you so much to the National Hemophilia Foundation and the NYC Chapter for this opportunity.” ~ Nicole Angeles

To find out how you can attend Albany Days or Washington Days in 2019, contact NYCHC's Advocacy Coordinator, Lindsay Cox below:

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