Patients in many states do not receive legislative support from health policies that could improve their lives, according to the 2018 State Report Card from the National Organization for Rare Disorders Rare Action Network (NORD RAN). The report found that “laws are failing rare disease patients,” and state lawmakers are responsible for the lack of appropriate access to health care for the patients.
Each year, NORD rates the 50 states on a set of criteria to grade the strength of their policies including prescription drug cost-sharing limits, policies for biosimilar information dissemination, and the establishment of rare disease advisory councils. This year NORD added Medicaid 1115 Waivers and state “Right-to-Try” laws criteria to the report card.
States received grades ranging from A to F. An A grade indicates the state policy meets all desired standards, and should be considered the model policy that other states should seek to enact. An F grade indicates the state has no policy provision for the relevant issue.
Some of the findings include an F grade given to 36 states for failing to enact prescription drug cost-sharing limits; an F grade to 15 states for failing to mandate adequate coverage of medical foods (multiple rare disorders require special nutrition in order to prevent serious disability); and an A or B grade to 15 states for protecting patients against step therapy (when insurers require patients to try alternative medications – and seeing if they fail first – before using the drug prescribed by the doctor).
“The numbers are astonishing,” said Peter L. Saltonstall, president and CEO of NORD, in the March 20 press release announcing the findings. “The latest State Report Card shows that state laws are not sufficiently representing millions of citizens. State lawmakers play an important role in determining individual access to health care and the report indicates that in several states, laws are failing rare disease patients.”
A disease is designated as rare or orphan when less than 200,000 Americans are affected by the disease at any given time. Over 7,000 diseases affect close to 30 million Americans. Mesothelioma, a cancer caused by past asbestos exposure, is responsible for approximately 3,000 new cases of cancer each year in the U.S. There is no cure for mesothelioma, and the disease is resistant to many treatments.
These policies are especially critical to mesothelioma and rare disease patients who often have limited or no specialized care available to them. When treatments are available, they often come with a very high price tag. Urging states to mandate out-of-pocket costs for prescriptions could benefit all rare disease sufferers.
Biologics, according to NORD, represent the future of rare disease treatments. These type of drugs are often used to treat rare and chronic diseases “in an innovative and rejuvenating manner” that other treatments cannot. However, biosimilars, or “generic” versions, can be problematic leading 46 states to pass laws requiring communications with a prescriber prior to being dispensed. It is this type of protection NORD is seeking.
“The intent with this report is to share valuable information that will enable advocates to affect change in their state,” said NORD Director of State Policy, Tim Boyd. “The Rare Action Network is dedicated to working with advocates and legislators until ideal policies are achieved in all 50 states and the District of Columbia.”
Visit Rareaction.org to see the 2018 Report Card for your state.
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