Please join us in congratulating New York Blood Center’s Hemophilia Services on reaching a major milestone of forty years of growth and service!
NYBC’s Hemophilia Services was established in 1983 as a result of a partnership with Long Island Jewish Medical Center (now known as Northwell Health Systems), Mount Sinai Hospital, and New York Presbyterian Hospital Cornell. In 1995, these hospitals formed the Hemophilia Services Consortium, Inc., a cooperative hospital services organization dedicated to people with bleeding disorders, to provide pharmacy services to patients. Hemophilia Services partnered with the Consortium to provide lifesaving medication to patients enrolled in select Hemophilia Treatment Centers (HTCs) associated with major teaching hospitals. In 2001, the Consortium welcomed Albany Medical Center, and in 2017, they welcomed Montefiore Medical Center as its newest member, enabling NYBC to serve five HTCs.
HTCs are federally funded entities submitting data for researchers and scientists specializing in rare bleeding disorders. This data is used to advance knowledge that has and will continue to impact the health practices used to care for patients with rare and complex bleeding disorders.
Initially, Hemophilia Services focused on filling medication orders that contained clotting factor, infusion supplies, and a waste disposal kit so patients could comply with their medication therapy. But over the years, pharmacy services have expanded to further improve patients’ lives and keep pace with the ever-changing needs of this population, and NYBC stepped up to meet those needs.
- Expansion of Pharmacy Services – NYBC pharmacy is licensed in multiple states. We take a proactive approach to hemophilia therapy management and work closely with the patient’s clinical team at the HTCs.
- Lifesaving medications are also provided to our hospital customers 24/7/365 for elective procedures or emergencies.
- Advocacy – Working in tandem with the HTCs, NYBC has been very effective in advocating for key state policy and regulatory changes as well as legislation that would ensure patients would have access to care and all medications approved by the FDA for bleeding disorder patients. Accomplishments include coverage for children enrolled in New York State’s Children’s Health Plus (CHP) program. Because of this legislation, children can now receive their lifesaving medication in the home and not have to visit a clinic every time they need an infusion. We supported legislation that prevents insurance carriers from changing their medication formulary or medical benefits during a contract year. This bill was signed by the Governor and effective 1/1/2023. NYBC advocated at a regulatory level with success in having insurance carriers providing benefits to enrollees in Medicaid to eliminate barriers to certain medications needed by bleeding disorders patients. We supported a bill that would require carriers to apply third party assistance such as pharmaceutical co-pay assist programs to help patients offset their co-pays and deductibles when paying for high-cost medications. This bill was signed by the Governor and went into effect on 1/1/2023. Medication treatments have evolved from infusions to subcutaneous meds for certain disorders and gene therapy is on the horizon which would represent a major advancement in the treatment of this disorder which has claimed the lives of so many and left many disabled due to joint bleeds. NYBC will continue to support and advocate for patients in need of these life-changing medications and treatments.
- Home Infusion Services – NYBC has coordinated over 7,000 home infusion visits ensuring that post-surgical patients or patients recently diagnosed with a bleeding disorder will receive the care they need as well as the training necessary to self-administer their medications so they can comply with their medication therapy and live a full life with minimal (if any) limitations.
- In keeping with the delivery of health care virtually, NYBC recently produced a virtual hemophilia in-service for visiting nurses to ensure that nurses would have access to the training and information they need to provide quality care in the home.
- NYBC published an insurance resource guide that helps patients to navigate their health insurance options and understand the questions they need to raise so that they will receive the care and medications they need to manage their disorder.
- NYBC also supports educational grants to the HTCs and to the Hemophilia Association of New York, a consumer organization that assists patients with bleeding disorders. These grants help educate patients to better manage their lifelong bleeding disorder. NYBC also supports a regional educational meeting that brings together clinicians from New York State, New Jersey, New England, and Puerto Rico.
The above accomplishments, achievements, and support are just a few highlights of the service and support offered over these many years to HTCs and patients.