Priorities

Priorities:
 Establish an annual "Hemophilia Awareness Month" in New York State

- Increase awareness, knowledge and understanding of hemophilia and other bleeding disorders issues

- Preserve access to adequate and affordable health insurance coverage

- Support access to systems of care that address the multiple needs of all consumers

Join forces with NHF and others advocates across the country to raise public awareness, and promote legislation and best policies affecting people with bleeding and clotting disorders.

 STATUS AND NEXT STEPS:
Legislation opposing Tier 4 cost-sharing

This bill in the NYS Assembly (A8278)  and its companion bill in the NYS Senate (S5000) seek to amend existing legislation so that individuals who use high-cost specialty medicines are not disadvantaged by extraordinarily high co-pay requirements.

WE SUPPORT PASSAGE OF A8278 and S5000

The bills provide that no health care plan or health insurance policy which provides
coverage for prescription drugs and for which cost-sharing, deductibles or
co-insurance obligations are determined by category of prescription drugs
including, but not limited to, generic drugs, preferred brand drugs and
non-preferred brand drugs, shall impose cost-sharing, deductibles or
co-insurance obligations for any prescription drug that exceeds the dollar
amount of cost-sharing, deductibles or co-insurance obligations for any other
prescription drug provided under such coverage in the category of non-preferred
brand drugs or their equivalents.

Read the text of the bill here: www.assembly.state.ny.us/leg/?bn=S05000&sh=t

- Medicaid 

Medicaid reimbursement for clotting factor products in NYS has been inconsistent over time and geography (insurance intermediaries appear to interpret Medicaid rules differently). Medicaid's current practice is to reimburse Hemophilia Treatment Centers at their invoice-cost for factor. Only Centers in Rochester and Buffalo purchase directly from manufacturers at discount rates and so those Centers receive the lowest reimbursement. Medicaid coverage for factor used during a hospital inpatient stay is also an important issue.

We are working to educate Medicaid officials about the needs of people who need factor and to influence changes that will increase security for people who rely on NYS coverage.

- NYS Hemophilia Awareness Month draft legislation. Click here to read draft 

This bill will be introduced during the 2009-2010 NYS Legislative Session

- Ensure that individuals with bleeding disorders are never made to wait in emergency rooms

We believe Bleeding Disorders information should be included in ongoing education and training for Emergency Department staff statewide. Efforts are ongoing to raise awareness among various types of caregivers about the urgency required in care of bleeding disorders.

- NYS RFP for Specialty Pharmacy

During December 2008, NYS responded to escalating costs of high-cost injectable medicines by issuing a Request for Proposals for specialty pharmacy services to deliver a range of products to Medicaid beneficiaries statewide. After receiving proposals, State officials withdrew its RFP citing "technical reasons." From a source close to the matter here is a summer 2009 update:

"In approximately six months, the NYS Medicaid program will implement an initiative that is designed to reconfigure access to 'specialty pharmacy' products. In reviewing the RFP issued in December, we note that a number of the products listed would impact patients with blood disorders. Although DOH has since withdrawn the RFP for technical reasons, we anticipate that it will be re-issued very shortly and DOH will go implement the Specialty Pharmacy Program in Medicaid.