NORD recently sent a letter to US Department of Health and Human Services Secretary Kathleen Sebelius expressing NORD’s support for patient assistance programs for people enrolled in qualified health plans through health insurance exchanges. The letter asked the Secretary to clarify the Department’s position on patient assistance programs, which has become somewhat unclear as a result of conflicting information between the Secretary’s office and the Centers for Medicare and Medicaid Services.
NORD pioneered the first patient assistance programs in 1987. Only four years before, NORD had marshaled passage of the Orphan Drug Act, which dramatically reduced the barriers to rare treatments through incentives available to drug and device makers. But, as new rare disease treatments came about as a result, financial barriers to these treatments began to thwart patient access. Some patients did not have the means for insurance coverage and others did not have adequate health insurance, leaving them with bills they could not pay. NORD considers patient assistance programs a companion to the Orphan Drug Act to ensure access.
Since 1987, NORD has managed over 380 patient assistance programs for more than 1.3 million people. NORD will continue to provide patient assistance programs for as long as they are needed. Indeed, NORD fully expects to provide these programs for people enrolled in qualified health plans offered through health insurance exchanges under the Affordable Care Act (ACA).
DHHS’ conflicting messages on the permissibility of these programs needs to be clarified. For that reason, NORD, along with many other organizations providing patient assistance programs, asked DHHS to reconcile its conflicting messages.
NORD is pushing for clarification because of its intention to help people with rare diseases get access to important treatments. In making this plea to DHHS, NORD also recognized the basis for DHHS concerns about patient assistance programs insofar as they can adversely affect the functioning of the insurance market. Patient assistance programs can encourage health care plans to provide less coverage for expensive therapies than they would if these programs were not available. They furthermore may exacerbate plan coverage policy structures that make patients who require more expensive treatments pay more than patients who require less expensive treatments. Patient assistance programs can create an illusion of acceptability around these plan structures rather than reveal them as unjust to plan members and antithetical to insurance principles.
Therefore, while patient assistance programs help people with their immediate needs for treatment access, they could perpetuate these needs by obscuring the larger problem of unjust and inadequate health insurance policies for people requiring expensive treatments.
Larger policy changes are needed and eliminating patient assistance programs before these changes take place, will leave many patients with no means of access. If the right policy structures are put into place such that patient assistance programs are not required to nearly the current extent, then they will wither on their own.
NORD thus strongly urges DHHS to permit patient assistance programs to work in qualified health plans in health insurance exchanges. At the same time, NORD also urges private and public payers to structure their health care coverage policies so that eventually patient assistance programs are never needed except in the most exceptional situations.
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.
Translate This page:
SUBSCRIBE TO OUR E-NEWS