As a mom of four kids — three of whom live with multiple chronic illnesses — I’ve had a lot of experience with the health care system and how it works.
A proposal being considered by the General Assembly, if passed, could help make it all a little easier for families like mine.
Medications can be expensive, and the out-of-pocket costs significant for individuals and families. Sometimes third-party co-pay assistance programs can help patients and their families with these costs.
Legislation being considered in the General Assembly this session would require that any third-party assistance count toward a patient’s deductible or maximum out-of-pocket costs.
Here’s why that’s important.
My kids live with chronic illnesses including Type 1 diabetes, celiac disease, juvenile arthritis, gastroparesis, eosinophilic esophagitis, postural orthostatic tachycardia syndrome and Elhers-Danlos syndrome. Autoimmune/autonomic dysfunction diseases are often misunderstood and can be hard to diagnose. My kids have been through a lot, and it’s been a long road to get them on the right treatments — not only because of the nature of their illnesses but because of roadblocks put up by insurance companies.
When it comes to their health care, I’m my kids’ biggest advocate, and when I talk to other patient advocates, I find we’ve faced many of the same challenges accessing medication, including prior authorization requirements that delay care, and being forced to try and fail on medications that the insurer chooses — not our doctor.
My oldest daughter has been on a self-injectable biologic medication that costs $2500 a month. The first year she was on it, we were able to use a co-pay assistance program, which brought our out-of-pocket cost to just $5. The third-party assistance program picked up the rest, and the $2500 was put towards our $6000 health insurance deductible. The next year, we were surprised when the math suddenly changed, due to what’s known as a “co-pay accumulator” program. Our insurance would still accept $2495 each month from the third party, but would not count it toward our deductible. Going forward, only money that came directly from us would count.
How can that be right? The insurer would still be getting the same amount of money, yet we would have to pay more until we met our deductible. I understand insurance companies and their pharmacy benefit managers are businesses and need to make money, but these sorts of tactics are patently unfair to patients.
I will say, my family is fortunate. We could cover that cost if needed, but I know that not all patients can, nor should they have to. Isn’t that why we have insurance in the first place?
The good news is that some states, including Rhode Island, are working to fix this.
My family and I have talked to lawmakers about the importance of this proposal for all Rhode Islanders. We urge them to pass this legislation this session, and join the 17 other states along with Puerto Rico that have already done so. It could mean the difference for someone’s life.
Kate Tokarski is a social worker. She and her family live in Hopkinton, R.I.