Last week the governors of California and New York acted on legislation that is vital to members of the bleeding disorders community. On Thursday, September 30, California Governor Arnold Schwarzenegger vetoed an important piece of legislation spearheaded by the Hemophilia Council of California to establish standards of service for pharmacies that dispense clotting factor therapies to individuals for use at home in the management of hemophilia and other bleeding disorders.   SB 971, introduced by Senator Fran Pavley (D-Agoura Hills), had unanimously passed both houses of the state legislature.

SB 971 was an important legislative initiative with implications for not only people with bleeding disorders in California but in other states as well.  Passage of the bill would have ensured timely access to the full range of FDA-approved clotting factor therapies and better coordination among patients, their treating physicians and pharmacy providers.  Further, specialty pharmacies would have been required to provide consumers with necessary sharps containers and proper guidance for disposing of medical waste. 

On Friday, October 1, 2010, New York Governor David Paterson signed crucial legislation banning state-regulated health plans from creating specialty drug tiers within their prescription drug formularies, often referred to as “tier IV” drug pricing.  The bill, A.8278B/S.5000B, also encourages health plans to retain the more affordable two or three tier formulary structure. 

Presently, the majority of health plans have a two or three tier structure for prescription drug coverage (i.e., generic, brand and preferred brand) for which a consumer may be required to pay a set dollar amount.  With specialty drug tiers, a fourth tier is added to the drug formulary for the most expensive medications. The standard dollar co-pay is replaced with a co-insurance for these specialty drugs.  In states where these practices have been allowed, specialty drugs have been assigned a co-insurance between 20-40 percent of the drug cost, sometimes much higher.  This can make the cost of the medications out of reach for people who need them the most, particularly individuals needing high-cost medications to treat such conditions as hemophilia, certain cancers, hepatitis and HIV/AIDS. 

A.8278B/S.5000B was a key legislative priority for the New York State Hemophilia Advocacy Coalition, which had partnered with other state health coalitions to mobilize consumers and build support among state lawmakers. 

NHF commends the various consumer organizations in both New York and California, and their members for all of their hard work on both bills.  For more information on these bills and other issues affecting your access to care, visit: www.hemophilia.org/advocacy or e-mail: advocate@hemophilia.org.