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Washington Days Breaks Attendance Record

We are excited to report that we had a record number of participants from 39 states in this year’s Washington Days event February 27-March 1. More than 300 attendees participated in a total of 220 Hill visits, 65 of which were meetings scheduled with Congressional members (16 Senators and 49 Representatives).  


This year we asked Congress to:

1.     Support maintaining the federal hemophilia programs at the Maternal and Child Health Bureau (MCHB) and Centers for Disease Control and Prevention (CDC).

2.     Co-sponsor H.R. 460, the Patients’ Access to Treatment Act (House) or introduce companion legislation (Senate). H.R. 460 will increase access to life-saving drugs on specialty tiers by prohibiting insurers from imposing exorbitant co-insurance requirements on patients.  


We are pleased to say your voices have been heard! The 12 Representatives whom we met with and who have since signed on as co-sponsors for H.R. 460 are:


·         Mike Coffman (R-CO)

·         Eleanor Holmes Norton (D-DC)

·         John Lewis (D-GA)

·         Gwen Moore (D-WI)

·         Jim Langevin (D-RI)

·         Carol Shea-Porter (D-NH)

·         William Lacy Clay (D-MO)

·         John Tierney (D-MA)

·         Ed Markey (D-MA)

·         Keith Ellison (D-MN)

·         Louise Slaughter (D-NY)

·         Steve Israel (D-NY).

While we had many positive meetings with Senate offices, none has yet agreed to introduce companion legislation to H.R. 460.  Please continue to follow up with staffers you met with and ask for them to co-sponsor or introduce the bill.


Following the Hill visits, participants enjoyed hearing from Randi Clites (on behalf of the Ohio Bleeding Disorders Council), Tony Maynard (Hemophilia Council of California), Brendan Hayes (on behalf of the Texas Bleeding Disorders Coalition) and Bob Graham (on behalf of the New York Bleeding Disorders Coalition) during the State Advocacy Recognition dinner.  These chapter leaders, recognized for their enduring commitment to the community, shared some local advocacy successes achieved through collaboration at the state level. 


Washington Days concluded with the State Advocacy Workshop on Friday with a discussion on Medicaid and health reform implementation. Jessica Stephens from the Kaiser Family Foundation Commission on Medicaid and the Uninsured and the Disparities Policy Project gave an update on the changes to Medicaid’s eligibility, enrollment and cost-sharing policies starting in 2014.  JoAnn Volk, Research Professor at the Georgetown University Health Policy Institute, provided an update on state exchanges, marketplace rules, changes to the Essential Health Benefit (EHB) rules and regulations, and where states are in this process. She highlighted areas where state advocates can help push for improvements and enforcement of these rules. Both presentations were followed by a lively discussion by our panel of industry experts and questions from the audience.


Thank you for your continued support and effort on our shared advocacy issues. We will keep you informed as the legislation moves forward. If you receive a response from a legislator and/or staff person, or have any questions, please feel free to contact any member of the NHF public policy team.

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