The proposed Graham-Cassidy bill is bad for individuals with rare disorders. Our colleagues at the United Mitochondrial Disease Foundation (UMDF) engage an independent legislative advisory group, Holland & Knight, to assess the impact of proposed legislation on the UMDF community. UMDF has generously shared Holland & Knight’s overview of Graham-Cassidy bill, along with UMDF’s statement in response to this overview, with other members of the rare disease community.

The following statement from the PCD Foundation is adapted from the UMDF statement on the Graham-Cassidy bill: 

The Senate may soon consider a bill by Senators Graham and Cassidy that would substantially change the Affordable Care Act (ACA).  If it passed, it could then be considered by the House in an expedited manner.   The PCD Foundation is opposed to this legislation.  Many who suffer with PCD and other rare disorders have historically experienced difficulties obtaining affordable health care coverage.  The ACA made significant and historic progress to address this problem.  The Graham-Cassidy bill would reverse much of this progress. 

We have the following specific objections to the Graham-Cassidy bill.   

The bill would eliminate in 2019 all federal Medicaid funds for the “expansion” adults now covered by Medicaid in 31 states.  Similarly, it would terminate the Premium Support Tax Credits used by many lower and middle income  persons to defray the cost of purchasing health insurance.   Many individuals afflicted by PCD and other rare disorders would lose coverage as a result. 

In lieu of these repealed programs, the bill would provide a block grant of funds to the states to implement health care coverage programs.  These block grants would represent a cut in total resources available for health care services as compared to the ACA – Medicaid expansion states would receive fewer resources and the requirements are so vague that there is no assurance that individuals helped under the ACA would receive meaningful support. 

What is clear is that a state could seek a waiver to allow block grant funds to be used in a manner that would discriminate against individuals with PCD and other rare disorders.  Insurers could be allowed to return to the practice of charging individuals with pre-existing conditions unlimited higher premium amounts.  And such waivers could also allow insurers to sell plans that did not provide full essential health benefits coverage.

Finally a new “Per Capita Cap” approach to Medicaid would slowly squeeze resources from the program over time, which would endanger the care provided to children with PCD and other rare disorders who often qualify for the program on the basis of poverty, disability or both.  And states could even elect a block grant approach that would eliminate basic coverage protections for children.

Call your Senators and urge them to vote against the Graham-Cassidy Legislation at the Capitol Switchboard (202) 224-3121.

Find your Senator here. This is Senate legislation so contact your Senators, not your House rep. Note: Call even if your senators are already voting no. Calls are tallied and it helps to have the numbers.

NORD Statement on Graham-Cassidy

UPDATE: The Medicaid program directors from all 50 states have issued a joint statement opposing the Graham-Cassidy bill.  See attached.  NAMD-Statement-on-Graham-Cassidy9_21_17 (1)