Updated: Sep 7, 2021
Ohioans have been focused on protecting their family from the COVID crisis. But that is not the only public health crisis facing thousands of families like mine who are also impacted by rare diseases.
My daughter has a rare form of congenital muscular dystrophy, which wasn’t diagnosed until she was 16, after years of having her symptoms dismissed as growing pains. Once she was diagnosed, we found out that my husband and members of his family also have the same disease, albeit with fairly mild and unnoticeable symptoms, and are among the fewer than 1,000 known people in the United States with their specific disorders.
The National Organization for Rare Disorders estimates that 1 in 10 people are affected by one of the more than 7,000 rare disorders that have been identified. Here in Ohio, the estimated number could be more than 1 million affected people.
Rare disease patients and their caregivers, like me, face many obstacles. Over 90% of the 7,000 rare diseases do not have a Federal Drug Administration (FDA) approved treatment. For patients lucky enough to have access to a treatment, they often worry about how they will afford it. The price tag for rare disease therapies is often high given the complexity involved in manufacturing them and the small patient populations.
Unfortunately, while some patients receive coupons or other assistance to help cover a portion of their high out-of-pocket costs, most insurers now refuse to allow such assistance to count toward a patients’ cost-sharing totals, like their copay or deductible requirements for the year. These are known as copay accumulator policies, and when insurers include them in the health insurance policies they issue, it means that the high cost for the medication necessary to treat their disease is put back on the patient and their family.
This is a policy that Ohio lawmakers can change. States have the authority to require the health insurance plans they regulate apply copay assistance program contributions toward a patient’s cost-sharing requirements.
Insurers argue that copay accumulator policies give patients an incentive to use generics, which can lower the overall costs for health care. Unfortunately, this is often not an option for rare disease patients, whose medications often do not have a generic equivalent. Nor is it an option for many Ohioans who have a rare disease that requires high-cost, specialty drugs.
High drug prices are a real challenge to our country’s the health care system, but patients in desperate need of treatment should not be left with huge out of pocket costs. Copay accumulator policies can discriminate against those who don’t have other medication alternatives, like many rare disease patients. Keep in mind that when prescription costs become too high, patients, like those in my family, may resort to skipping doses or abandoning treatment entirely, which can lead to higher medical costs, as many patients can end up in the hospitals and have long-term health issues when they can’t afford their prescribed treatment.
The copay accumulator policy needs a fix here in Ohio. Two state legislators, Representatives Thomas West (D-Canton) and Susan Manchester (R-Waynesfield), have proposed changes to copay accumulator policies with House Bill 135. This bill would require insurance companies to count all amounts paid by patients or on behalf of patients - including money from third parties - toward their benefits unless there is a generic equivalent of the brand name medication they were prescribed. The bill clearly strikes an appropriate balance between the need for the system to achieve savings and the need for patients to get access to assistance.
This policy makes sense and bills like it have been passed in eight other states - West Virginia, Virginia, Arizona, Georgia, Illinois, Oklahoma, Kentucky and Arkansas. More than two dozen other states are considering similar legislation.
I ask the Ohio Legislature to do the right thing and allow all copay assistance - regardless of where it comes from - to count and help patients afford their life-saving prescription drugs.
Now, more than ever, Ohio families don’t need more obstacles to good and affordable health care.
Charlene York, a retiree from the Newark area, has been a passionate advocate for individuals living with rare diseases for almost 30 years. She helped identify a rare genetic disease within her family that was previously undiagnosed.