During the two-year national debate that led to the Affordable Care Act (ACA), NORD strongly supported certain key aspects of healthcare reform including:
We worked hard, along with many others, to keep those important provisions in the legislation during those months of intense and sometimes bitter debate.
As the October 1 launch of the new Healthcare Marketplace approaches, we remain generally positive on the healthcare reform process and the promise of the ACA.
However, NORD is concerned about the July 5th final rule issued by the federal government limiting access to prescription medications in the expanded Medicaid program.
Historically, Medicaid beneficiaries have been able to access all drugs manufactured by companies that participate in the drug rebate program. It was widely assumed that the same would be true for the expanded Medicaid program, giving recipients access to almost all medications.
However, in the Essential Health Benefits final rule for the new expanded Medicaid program, the Obama Administration backed away from its apparent position in its earlier proposed rule and issued a clarification that dramatically limits the number of drugs each state must cover in its formularies.
This could have a major impact on people with rare diseases. While those affected by more common diseases may have several treatment options, all equally effective, patients living with rare diseases have very limited treatment options.
Furthermore, because most rare diseases are serious and many are life-threatening, access to the specific therapeutic intervention indicated in each case is extremely important. People with rare diseases don’t have the luxury of substituting a second or third choice of medication.
In the final rule on Essential Health Benefits issued on July 5, the Centers for Medicare and Medicaid Services (CMS) said the process for determining prescription drug coverage in the expanded Medicaid program will be the same as for the private insurance market. That means plans will be required to cover the greater of the following: one drug per class or the same number of drugs as are contained in each class of drugs included in the state Medicaid benchmark plan selected.
It is disturbing that this shift away from what many believed had been promised in the proposed rule took place on a holiday weekend, when people were preoccupied with other things.
It is also a great concern to NORD that Americans living with rare diseases, for whom having access to specific therapies may be a life-or-death matter, could discover themselves without access to the prescription medications they desperately need.
RareDisease Dialog is the official blog for the National Organization for Rare Disorders (NORD). NORD’s staff and friends will share information of interest to the entire rare disease community.
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