We want to let you know about a very important piece of legislation, Assembly Bill A06039, will be heard by the Health Committee on Tuesday, February 14. This bill would allow children with bleeding disorders to access lifesaving clotting factor products and services at home under Child Health Plus.
The Hemophilia Association of New York is joining NHF for Washington Days on March 7 – March 9, 2012.If you would like to join us, please click on the link to register for Washington Days, click hereor go towww.hemophilia.org.
Washington Days participants are offered a discounted hotel rate of $179.00 per room (single or double) per night plus applicable taxes. This rate is available until February 1st. (After that date, you may have to pay a higher rate -- if a room is available). Information explaining how to go about reserving a hotel room under the NHF room block will be available on the "Thank You" page following submission of your completed registration form. (You can learn more about the hotel by visiting the Crystal Gateway Marriott Web site.)
If you are representing HANY in Washington D.C., please contact Annie at annhany@bestweb.net or 212-682-5510.
We will be reimbursing TRAVEL and HOTEL expenses. Please SAVE ALL RECEIPTS. All meals are your responsibility.
AGENDA:
Wednesday, March 7 4:30PM – Registration 6:00PM – Advocacy Training
Thursday, March 8 All Day – Meet with your Representatives
Friday, March 9 8:30AM – 12:00PM – NYS Advocacy Training
Albany Days March 18-19, 2012
This is your opportunity for you to learn about key legislative issues affecting the bleeding disorders community. It’s a chance for you to tell your stories to your elected representatives and staff members, helping them understand your needs and concerns. TRAVEL and HOTEL expenses will be covered by HANY. If you are interested in going to Albany, please contact Annie at annhany@bestweb.net or 212-682-5510.
AGENDA: Sunday, March 18 1:00PM – Registration 2:00PM – Advocacy Training Followed by Dinner Monday, March 19 All Day – Meet with your Representatives
Specific Issues and areas of concern:
S3865A CHP – non payment of factor in an outpatient setting.
S5849 Exchanges – ensuring that NY will have adequate coverage in their insurance exchanges scheduled to start coverage 2014.
Medicaid Redesign – currently factor is carved out of Medicaid Managed Care, but NYS Medicaid desires to have it covered under the Managed Care providers (not good for PHS or for profit providers).
Skilled Nursing Facility Access.
HANY is working closely with our coalition partners across the state as well as our national organizations to determine all of the potential implications of the proposal and the best possible response. We will continue to keep the community informed as more information becomes available.
Additional information on the bulletin and related topics is available on the following government websites:
Here’s a brief recap of some of our major initiatives and outcomes:
Outpatient clotting factor coverage for individuals with bleeding disorders
The bill passed out of both Health Committees without any opposition, a significant feat for a first time piece of legislation. The Department of Health (DOH) has agreed they will pay for outpatient factor for individuals with Family Health Plus (FHP), which will remain a Medicaid fee-for-service benefit.
Medicaid Redesign Team’s Proposals
MRT proposal 15 to eliminate “prescriber prevails” for individuals in fee-for-service, which would’ve limited physician discretion in determining what medication a patient should take was rejected. Again Effective August 25, 2011: reimbursement for clotting factor will be changed to pay at the lesser of acquisition cost or the Medicaid State Maximum Allowable Cost (SMAC). This date was moved up from the original (November 1). MRT proposal 11 was delayed and coverage for clotting factor products will remain a fee-for-service benefit.
We are truly pleased by the responses from our community. We would like to thank all our clients who participated in Albany as well as contacting their elected officials. We can best represent you when you join us in Advocacy! Our next trip to Albany will be late March early April of 2012.
