Apr. 11, 2018
Posted by Valaree DonFrancesco
Washington, D.C., April 11, 2018 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, released the following statement regarding Governor Matt Bevin’s Veto of SB 7, the Kentucky Rare Disease Advisory Council:
“Last week, Kentucky Governor Matt Bevin vetoed Senate Bill 7, legislation that would give the hundreds of thousands of rare diseases patients in the state a stronger voice in their government by creating a new Rare Disease Advisory Council.
The National Organization for Rare Disorders (NORD) is incredibly disappointed by Governor Bevin’s decision to veto this legislation, after it passed with unanimous support in the House and Senate, and vehemently disagrees with the Governor’s statement that a Kentucky Rare Disease Advisory Council ‘is an unnecessary expansion’ of the state’s role in supporting the health and well-being of its residents.
Rare disease patients in Kentucky face unique challenges every day of their lives, from obtaining an accurate diagnosis and accessing medical specialists with knowledge of their condition to battling for fair insurance coverage of their treatment and care. The Kentucky Rare Disease Advisory Council would help address these issues by providing a forum for stakeholders across the state to analyze the needs of the rare community and make recommendations on how to improve public policy. Governor Bevin’s veto statement rightly noted that ‘the Kentucky Department for Public Health does not currently have the expertise to support activities in the specialized field of rare diseases.’ From the perspective of the rare disease community, the lack of state expertise on rare diseases reinforces, rather than diminishes, the need for a new advisory body.
To date, there are five states, Alabama, Connecticut, Illinois, North Carolina, and Pennsylvania, that have enacted a Rare Disease Advisory Council and proven that it is an effective way to ensure better government engagement and action on issues important to the rare disease community.
NORD is confident that Kentucky will still be the sixth state to create an Advisory Council and is heartened that Senator Julie Raque Adams, the original sponsor of SB 7, is pursuing an override of Governor Bevin’s veto. The Kentucky Rare Action Network (RAN), led by State Ambassador Patrick Dunegan, adamantly supports the push to override the veto this session and thanks Senator Julie Raque Adams for being a champion for rare diseases patients.
Kentucky residents interested in helping to advocate for the enactment of SB 7 can take action by visiting rareaction.org.”
 Bevin, Matthew G. Veto Message from the Governor of the Commonwealth of Kentucky Regarding Senate Bill 7 of the 2018 Regular Session. PDF. Office of the Governor, April 2, 2018. http://www.lrc.ky.gov/record/18RS/SB7/veto.pdf.