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

by Jami Carter

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.

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.

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. (Read More)

News Releases

W. Bradford Wilcox joins Sutherland Institute as visiting scholar

Sutherland Institute announced today the addition of W. Bradford Wilcox, director of the National Marriage Project and professor of sociology at University of Virginia, as a visiting scholar.

“Brad is a nationally renowned leader in family policy,” said Rick Larsen, president and CEO of Sutherland Institute. “His expertise will provide an important perspective as Sutherland elevates and strengthens the family as the fundamental institution of civil society.”

Wilcox is also a senior fellow at the Institute for Family Studies and a nonresident senior fellow at the American Enterprise Institute. His work for Sutherland will address the impact of family structure on child outcomes; the importance of education, work and family formation on upward mobility; and policy recommendations to support and strengthen Utah families.

For more information visit sutherlandinstitute.org.

Community leaders unite to provide support and resources for thousands of Utahns with rare diseases

Rare Disease advocacy organizations and biotech and healthcare industry leaders will partner to accelerate the diagnosis and improve the care of more than 344,000 Utahns living with a rare disease. On Rare Disease Day, Feb. 28, 2023, community leaders will host a free event from 5 to 7 p.m. at Recursion Headquarters, 41 South Rio Grande Street in Salt Lake City to provide support and resources for those living or impacted by a rare disease. Additionally, Gov. Spencer J. Cox will declare February 28, 2023 Rare Disease Day in the State of Utah. (Read More)

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