New York Letter [RE: Support for Assembly Bill 7581 and Senate Bill 5774]

May 26, 2017

VIA EMAIL

Chairman Richard N. Gottfried
Chair, Committee on Health
New York State Assembly
LOB 822 Albany, NY 12248

Chairman Kemp Hannon
Chair, Committee on Health
New York State Senate
The Capitol - Room 420
Albany, NY 12247

RE: Support for Assembly Bill 7581 and Senate Bill 5774

Dear Chairmen Gottfried and Hannon:

The State Patient Access Coalition (SPAC) appreciates this opportunity to share with you our support for your legislation which will retain blood clotting factor as a fee-for-service benefit in New York Medicaid. This will protect Medicaid recipients’ access to their medically appropriate blood clotting factor.

SPAC represents the world’s leading manufacturers and the nation’s leading distributors of blood clotting factor. Blood clotting factor is a lifesaving therapy for individuals with bleeding disorders, such as hemophilia and von Willebrand Disease. SPAC was created to address issues of patient access to blood clotting factor and to engage with policymakers about the unique process to manufacture and dispense this vital therapy. SPAC works in collaboration with policymakers to ensure Medicaid recipients receive quality care that is evidence-based and cost-effective.

Blood clotting factors control and prevent or reduce the frequency of bleeding episodes in individuals who lack certain clotting factor proteins that are needed for effective hemostasis. Individuals with bleeding disorders, such as hemophilia and von Willebrand disease, lack certain clotting factor proteins. Blood clotting factors enable these individuals to infuse the lacking protein. When used properly, blood clotting factors provide these individuals with increased lifespans1.

Your legislation maintains the current system of allowing Medicaid recipients with bleeding disorders access to their medically appropriate therapy from qualified specialty pharmacies. The specialty pharmacies play an important role in managing the treatment of these Medicaid recipients.

It is important to maintain the current system because blood clotting factors are non-interchangeable, sole source biologics that produce different therapeutic outcomes based on each patient’s unique characteristics. Accordingly, patients depend on appropriate access to all FDA-approved blood clotting factors to be assured that they, in close consultation with their physicians, are able to identify and become stabilized on the blood clotting factor that best fits their health status. Patients who rely on these therapies as part of their life-saving treatments often experience significant differences in outcomes on a brand-by-brand basis. Therefore, it is essential that patients have access to their medically appropriate therapy.

The principle of providing Medicaid recipients access to all FDA approved therapies is one supported by the leading experts in hemophilia care. The National Hemophilia Foundation’s Medical and Scientific Advisory Council (MASAC) Recommendation 159 states, “The characteristics of each product and the resultant product choice for an individual patient require a complex decision making process with the ultimate product being agreed upon by the patient and their respective healthcare provider.”

Your legislation would place in statute the current system of providing Medicaid recipients with their blood clotting factor through the fee-for service system. The fact is individuals with bleeding disorders have unexpected costs that are occasionally so large that they could disrupt a managed care company’s stability2. The fact that these costs cannot be predicted makes this population very difficult to underwrite and therefore not a good candidate for managed care. In fact, California and Florida, like New York, carve blood clotting factor out of the managed care benefit.

We appreciate your sponsoring this important legislation and would welcome the opportunity to discuss these comments with you further. Should you have any questions or require additional information please do not hesitate to contact me at: This email address is being protected from spambots. You need JavaScript enabled to view it. or (443) 433-1110.


1 https://www.wfh.org/en/page.aspx?pid=637#Life_expectancy
2 Milliman Report. An actuarial study of hemophilia. October 24, 2013.