Hemophilia of North Carolina

Since 1977, serving the people of North Carolina
affected by bleeding disorders.

260 Town Hall Dr., Suite A, Morrisville, NC 27560
1-800-990-5557 (toll free)

HNC Legislative Day

HNC Legislative Day

Tuesday, June 8, 2010
Morrisville and Raleigh, NC

A Powerful Group of Advocates Come Out for the 2010 HNC Legislative Day.

An enthusiastic and energetic group of members from Hemophilia of North Carolina gathered on June 8th to attend the 2010 HNC Legislative Day. The day started with breakfast and a morning meeting at the Hilton Garden Inn in Morrisville to talk over the events for the day, break into groups for the meetings and share an in depth discussion on the issues facing the bleeding disorders community during this very critical time with health care. We then hit the Raleigh "hill" for a full day of meetings.

Members gathered to promote legislative interests including reinstating the funding of a safety net program to assist families of Hemophilia patients with medical and other expenses (Hemophilia Assistance Plan), ensuring a seat at the table and supporting the temporary federal high-risk pool.

Our seat at the table asked for a presence as a seat-holder in all advisory committees that concern our care and lead to better health outcomes and cost efficient use of state funds for the care of people with bleeding disorders. Our request was a seat at the table when decisions are being made about hemophilia care in advisory committees, committee hearings, and administrative roundtables in the state of North Carolina. Our presence and participation will:

  • Ensure they have accurate information on what is needed unfiltered by other interests
  • Ensure that they do not make decisions with unintended consequences
  • Ensure that they include the appropriate health care providers and vendors to achieve the most cost effective solutions
  • Ensure that they are aware of what is truly needed before choosing an inappropriate or more costly option
  • Ensure that health plans offer an appropriate site of care at the earliest time possible to reduce pain, suffering and cost

We asked that a member from the bleeding disorders community be allowed to participate in the discussion with all stakeholders in order to create the best outcomes and protect the states resources, both human and financial.

We see changes taking place already in this area with language in the current Appropriations Act (SB 897) - Specialty Drug Provider Network – Section 10.23 in the Senate and House budget. The wording varies slightly between budgets but states the Department of Health and Human Services shall work with providers (or create a specialty drug provider network) to develop ways to reduce expenditures for specialty drugs, maintain best practices, prevent overutilization, and allow for drug reimbursement rate negotiations for hemophilia, hepatitis C and IVIG drugs. We are very concerned that they are targeting care provided to a small population of individuals with rare, chronic and expensive conditions.

As you know, the Hemophilia Assistance Plan was cut abruptly and in its entirety in 2008 after more than 20 years. This plan was an important source of assistance through the HTCs and helped to fund items such as dental care, medical equipment and supplies, transportation to and from appointments, and annual visits to the centers. We have been advocating for its reinstatement since that time and received some positive feedback from several legislators in helping to support the effort.

We also discussed the temporary federal high-risk pool and HB1730 – an act to authorize the NC Health Insurance Risk Pool (NCHRIP) to contract with the US Department of Health and Human Services to administer the newly created federal pool. Although the current $1 million dollar lifetime cap in NCHRIP's proposal to HHS may not be adequate for some individuals with hemophilia, we are supporting this proposal due to the elimination of the $100,000 annual cap on specialty drugs which currently exists in the NC high-risk pool. The temporary pool, with this modification, would provide critical support to many in our community who go without insurance until the full implementation of the Patient Protection and Affordable Care Act that will become effective in 2014.

Throughout the day, attendees visited with dozens of Representatives and Senators to share information on these issues and raise awareness for the community. Many of your legislators indicated they would support our requests and were interested in helping to raise awareness about the needs.

If you were unable to attend the event, we encourage you to contact your legislator and speak about those issues listed above that impact our community. If needed, HNC will assist with helping to facilitate these discussions and provide more in depth information on these concerns. Decisions are being made daily and time is of the essence to make sure we get that seat at the table!

HNC was also able to secure space in the courtyard of the Legislative Building to share information throughout the day. During lunch, HNC provided boxes lunches along with literature about HNC to legislators and their aides.

We owe a debt of gratitude to those that attended the day and their outstanding efforts made on behalf of the community. They spoke passionately for all those affected by a bleeding disorder and made some very valuable connections with Legislators and their aides that will help to benefit the community in the future. We can assure you that the changes taking place will affect everyone and our many thanks to those who made their voices heard!

We would also like to acknowledge the HNC Advocacy Committee Members and others who assisted in planning the day and providing the latest up-to-date information on our issues – Leonard Poe, Warren Ingram, George McCoy, Scott Andrews, Kim Bernstein and Kelly Fitzgerald. This is a very active group that is continually working to keep on top of changes that are taking place and make sure that the needs of the community are known to those who have an impact on our care and treatment.

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