Advocacy Agenda

Issue 1: Increase awareness, knowledge and understanding of hemophilia and other bleeding disorders issues

Objectives
1. Introduce/secure passage of legislation to create a NYS Hemophilia Awareness Day.

2. Launch campaign to educate public health officials about what to do in emergency situations.

Issue 2: Preserve access to adequate and affordable health insurance coverage

Objectives
1. Monitor proposals by public and private health insurers that affect patients’ ability access to health insurance.

2. Expand coverage under Child Health Plus for outpatient clotting factor products.

3. Secure implementation of a separate Medicaid inpatient reimbursement rate for clotting factor.

4. Collaborate with NHF to secure passage of The Health Insurance Coverage Protection Act (Senate Bill 2706/House Bill 6528). Revise / restate do these bills still apply? Include Tier 4 bills AND (federal) H.Con. Res. 147

Issue 3: Support access to systems of care that address the multiple needs of all consumers

Objectives
1. Monitor proposals by public and private entities that would impact a patient’s ability to access care at an HTC.

2. Preserve access to the full therapeutic range of clotting factor therapies.

3. Preserve access to choice of clotting factor providers.