We are dedicated to ensuring that people with bleeding disorders have access to quality health care, giving them the opportunity to live a happy and fulfilling life. 

OUR HISTORY

The treatment centers and patient organizations who comprise NYSBDC first came together in 2009 to advocate for changes to the New York State Child Health Plus program. While CHP provided needed care to economically struggling families in New York it didn’t cover clotting factor for home infusion. At home infusions were a huge advance in medical treatment which allowed families to treat their children at home, keeping them healthy, in school and out of the hospital, all while saving insurance providers money on care costs.  Working together the treatment centers and patient organizations organized a  patient advocacy day in Albany in March 2009 which brought patients, families, and treatment center staff to the State Capitol to meet state legislators. A bill was introduced in the state legislature (which eventually passed) and a Coalition was formed.

Since 2009 Coalition members have continued to work together to lead the New York State bleeding disorders community in advocating to state legislators and policy makers on a number of issues, from the ban on Tier 4 Co-Pays, Pharmacy Access legislation, Step Therapy Reform, Medicaid, and now Prior Authorization Reform and Patient Assistance.     

Advocating for patient access to care is now a year round effort for the Coalition. Our efforts are highlighted by the Albany Days patient advocacy program,  held in March every year to coincide with bleeding disorders awareness month.