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Take A Deeper Look 

Recent commercial health plans and pharmacy benefit managers (PBM's) launched copay accumulator programs. These plans are causing concern because a majority of patients with chronic conditions rely on these programs to afford their medications. As copay accumulator adjustment programs become more prevalent across health plans in Utah, patients and organizations are being negatively impacted. Here are some of their stories and testimonials.

Parents of Children with Cystic Fibrosis (CF)

“Families like ours who have children with CF max out our insurance plans every year. Each year it's a balancing act between premiums and out of pocket costs to make sure we can plan financially for what is coming. With healthcare costs increasing at about 10% over the last ten years and wages increasing at only about 3%, it can be stressful for a lot of families”.


“So, when you add being pulled into the middle of a fight between insurance carriers and pharmaceutical companies, things get more complicated. We have no control over the costs of the drugs used in CF care and those drugs are often not drugs that are made by more than one company.  Therefore, we don't have the normal options of buying generic or alternative drugs. So, for the health of our children, we have to accept whatever conditions are set by both the drug companies and insurance carriers to make sure we can get those medications for our children.”


“Each year, I scour our insurance plan documents for changes and updates on their policies, so we don't get blindsided. Copay coupons through the drug manufacturers have saved us over the combined 10 years of CF care we have under our belt until this year. We have been lucky up until this point. But carriers can change plans easily in the fine print every year and legislation changes affect us on the state and national levels. The security and stability that would come with a ban on copay accumulators is massive, and taxes one giant anxiety from our lives as we balance all that comes with caring and advocating for our chronically ill children.” 

Kaela Rawlins, mother of 2 children with Cystic Fibrosis 


Patient Story, Adult Living with Cystic Fibrosis

“As someone with a genetic disease called cystic fibrosis, it is critical that I have reliable access to comprehensive healthcare. One of the most important aspects of my health plan is prescription drug coverage which includes expensive specialty medications. If I were to stop my daily treatments even temporarily, I would face devastating health consequences.”


 “I’m the mother to a 12-year-old daughter and I have been with my current partner for the last 5 years. We would love to be married, but his health insurance provider has been notoriously problematic, primarily due to their use of copay accumulator programs. “These programs put a tremendous financial strain on families who are already carrying the emotional burden and monetary expense of life with a chronic illness”. Specialty medications become prohibitively expensive and inaccessible to those who need them most. Because of the uncertainly and potential life-threatening consequences of copay accumulator programs, my partner and I have decided to stay unmarried.”




Lupus & Allied Diseases Association, Inc. 

“We are part of the Utah All Copays Count Coalition because as an organization led by individuals dealing with lupus and other complex medical conditions, we know firsthand the challenges faced by patients struggling to live with a disease of unmet need for which there are limited therapies. Once we respond to a drug, we want it to remain accessible to us, but the reality is that it usually then becomes a struggle to afford the insurmountable out-of-pocket costs for our indispensable disease-modifying therapies. We strongly support any legislation that would establish essential patient protections by prohibiting copay accumulators and counting all dollars towards an insured’s cost sharing requirements and ensuring access to vital life-improving and lifesaving treatments.”

Kathleen A. Arntsen, President & CEO of Lupus and Allied Diseases Association, Inc

Patient Story, Utah Aids Foundation 

“I felt scared and discouraged when I was told I have a $3,200 co-pay to pick up my HIV meds.  I don’t even make that much money each month.  It is even scarier to think I must go without meds for several months.  I have not been able to take my HIV medications for 6 weeks and won’t be able to for another 8 weeks because of the co-pay.”

“Jason” was diagnosed with HIV in 2012.  He has been on HIV medications since he was diagnosed and has only recently felt hopeful that he may live a long and healthy life if he keeps taking his meds. 

Last year, he graduated from college and started a new job that, in his opinion, pays well and offers insurance.  This was the most exciting change in his life since he no longer must rely on state assistance to access his HIV medications. 

When he transitioned off state assistance his case manager gave him a pharmaceutical co-pay card to cover his co-pays.  It seemed very simple and encouraging to him.  Around the first of September, the same time each month, he went to the pharmacy to pick up his meds.  This pick up, he was told he has a $3,200 co-pay, that his co-pay card was exhausted, and his insurance recently adopted a co-pay accumulator policy.  He had no idea what this meant so he contacted his old case manager.  Something he never wanted to have to do again. 

After 6 weeks of his case manager trying to be creative to pay for his co-pays, “Jason” still has been without medications.  He makes too much money to qualify for any state program to help with his meds but doesn’t make enough money each month to cover a co-pay.  “Jason” has become very depressed and often considers quitting his job so he can be eligible for assistance again.  He will not be able to get his HIV meds again until after the first of the year but is extremely anxious knowing he will have to go through this same thing next year.  What scares him even more is knowing he can spread HIV since he is not able to take his meds and keep his HIV viral load at undetectable levels.


Jason is a client of the Utah AIDS Foundation

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