Guest Opinion: End predatory copay accumulator programs to help people like me

It is likely you know someone who is a cancer survivor.  Maybe you are a survivor yourself.  Perhaps you also know someone who lives with multiple sclerosis.  I am the rare person who has survived cancer, and now lives with multiple sclerosis (MS).  

There is no known cure for MS. Once it damages parts of my nervous system, it cannot be repaired. Fortunately, there is disease-modifying medication that keeps me living a normal, productive life. 

For the first three years after being diagnosed with MS, I couldn’t get the medication that I needed—and to make matters worse, I was still paying off bills from cancer.  I cashed out my retirement account and emptied college funds in an attempt to pay for my new treatment, which costs around $97,000 a year.  My annual out-of-pocket maximum is a whopping $10,000.  And like many specialty medications used to treat chronic illnesses like MS, there is simply no “generic” or equivalent option for me or my doctor to consider.

For people who need a high-cost medication, health insurance is not just important—it is the difference between receiving necessary treatment, or not. Though I’m grateful for my health insurance, I was still unable to afford the high copay and deductible for my treatment. And until I could figure out how to afford my copay, I had to risk going without treatment.

My life changed when I discovered there is help available for patients like me with a high-cost medications.  Many of us benefit from so-called “copay assistance programs,” which drug manufacturers and charities have created to help patients afford their medications.  For patients like me, whether I can pay my copay and deductible literally makes the difference between receiving life-sustaining medical treatment, or not.  

Unfortunately, a few years ago health insurer companies and pharmacy benefit managers (PBMs) began slipping language into health plans that allow them to deny counting third-party financial assistance for specialty medications towards a patient’s deductible or out-of-pocket maximum.  This language, known as a “copay accumulator,” allows insurers to effectively pocket the patient assistance funds intended to help patients like me.

Insurers and PBMs pocket my patient assistance – right up until it runs out, and leaves me no closer to meeting my $10,000 out of pocket maximum than I was at the beginning of the year. When my patient assistance runs out, I’m forced to make an impossible choice – risk permanent brain damage or continue to pay thousands of dollars. 

Imagine the frustration of patients like me who believe they have met their deductible or out-of-pocket maximum, and then receive a bill, often for thousands of dollars. In fact, they may have no idea that their plan even has an accumulator until they receive the bill.  Our ignorance is understandable.  Insurers and PBMs bury the fact that there even is an accumulator in their plan documents.  In fact, according to the AIDS Institute, here in Utah there are 3 insurers with copay adjustment policies that had “no information available to consumers in plan documents on their website, and the copay accumulator policy had to be confirmed via a phone call to customer service representative.”

Lawmakers across the country have started to fight back against this scheme, by introducing bills to ban this practice, and make sure that the financial assistance intended to go toward patients like me does, in fact, apply against our deductibles and out-of-pocket maximums. 

Here in Utah, Senator Curt Bramble has sponsored S.B. 184, Prescription Cost Amendments.  This bill would end practices like using accumulators, or using other predatory practices, to pad the bottom line of the insurance companies at the expense of patients and their families. To date, 16 states have passed laws banning copay accumulator practices and Utah should be the next state to do the same thing.  

It is time for Utahns to come together to put an end to copay accumulator programs that have harmed so many of our families, friends, and neighbors that are struggling to afford their medications. For patients like me, Senator Bramble’s bill will literally make the difference between whether I am able to receive life-supporting medication or not.  I have waited for years for a legislator willing to stand up to insurance companies and help root out this practice. Please join me in thanking Senator Bramble for being that person, and sponsoring this critical legislation that takes on insurance companies. 

Jami Carter, Tooele, Utah