On Tuesday, April 8, 2014, members and friends of the Delaware Valley Chapter will join volunteers from the Western PA Chapter in Harrisburg to speak with legislators about the needs of the Pennsylvania bleeding disorders community. This annual day helps state senators and house members understand key issues affecting our families and patients and we hope you will be able to join us as we make our voices heard.

ISSUE #1: CONTINUED FUNDING FOR THE PENNSYLVANIA HEMOPHILIA PROGRAMS

For almost 40 years, the Commonwealth of Pennsylvania has provided annual state support to the hemophilia programs in Pennsylvania.. The 2011-2012 Pennsylvania state budget included a 31% reduction in state support to the seven hemophilia programs that provide care to more than 2,700 patients with bleeding disorders (from $1.4 million to $949,000). Governor Corbett's current 2014-2015 budget proposal maintains the funding at $949,000.

This line appropriation supports staffing and direct patient services in the programs.

As patients, we support the continuation of state funding for the Pennsylvania Hemophilia Programs within the Department of Health Budget for 2014-2015 at $949,000, as proposed by Governor Corbett.

ISSUE #2:HIGH COST SHARING FOR FACTOR CONCENTRATES

One way Pennsylvania health insurance companies are trying to reduce the cost they pay for expensive medicine is to implement "specialty tier drug pricing" or "high cost-sharing" for specialty drugs. Hemophilia medicine (clotting factor concentrate) is considered a specialty drug.

Specialty tier drug pricing requires patients to pay a percentage of the total charge for the drug, referred to as co-insurance, rather than a fixed amount, referred to as a co-payment. In this way, the cost of particularly expensive drugs is shared between patients and health insurance plans. This is a problem not only for people with bleeding disorders, but for thousands of Pennsylvanians who have serious, chronic medical conditions and need specialty drugs.

Pennsylvania Senator Bob Mensch introduced Senate Resolution 70 in 2013 calling for a study to determine the effects of high cost-sharing on the thousands of patients in Pennsylvania who rely on expensive specialty drugs to sustain their lives. The study is currently underway and the study committee will make a recommendation to the Pennsylvania legislature by July 1, 2014 regarding whether or not regulation is needed in Pennsylvania to control this insurance practice.

We support the current study being conducted in Pennsylvania to determine the impact of high cost-sharing for specialty drugs on patients in the Commonwealth. We hope that Pennsylvania, like other states, will see the need for regulation of this health insurance practice.

PLEASE PLAN TO JOIN US ON TUESDAY, APRIL 8, 2014 IN HARRISBURG. WE WILL PUT YOU IN A TEAM WITH OTHER VOLUNTEERS AS YOU MAKE VISITS ON THE DAY. YOU CAN DRIVE OR TAKE THE BUS WITH US FROM THE PLYMOUTH MEETING MALL. EITHER WAY, YOUR PARTICIPATION IS NEEDED AND VERY MUCH APPRECIATED. PLEASE COMPLETE THE REGISTRATION AND SEND BACK TO THE DVC OFFICE AS SOON AS YOU CAN AS IT TAKES TIME TO SET UP APPOINTMENTS WITH LEGISLATIVE OFFICES.

Please join us for this important day!!