Paying for innovative, effective, lifesaving medications for families like ours who have a child living with a chronic and deadly disease is a huge financial burden that is exacerbated by insurance company policies that refuse to recognize essential prescription assistance Utah families receive.

With one simple, commonsense reform, our Legislature can significantly ease this needless burden on families across our state.

Eight years ago my darling, vivacious, sassy, and independent daughter, Penny, was born after a difficult and complicated pregnancy and a long labor. My husband and I were thrilled she was here, and instantly fell in love with our darling daughter.

Over the next three weeks I noticed some symptoms I didn’t expect and had her in the pediatrician’s office weekly. Penny was ultimately diagnosed with cystic fibrosis (CF). CF is a genetic, progressive, life-limiting disease that primarily affects the respiratory and digestive systems.

When Penny was newly diagnosed, we were told her life expectancy would be 38 years old. Nothing about the pain of my pregnancy and labor compares to being told how our sweet daughter’s life could be cut short by this awful disease.

Today, Penny does an hour of treatments per day — when she is healthy. She does two or more hours a day when she is sick. Penny started taking medications at 3 weeks old and by 8 months old she was swallowing pills. At her peak she was taking more than 25 pills a day to be able to digest her food and keep her body functioning as it should. She caught every cold, and we struggled to keep her out of the hospital due to lung infections.

When she was 2, the FDA approved a lifesaving medication for her age group. This drug caused her pancreas to begin working, and she was able to completely stop the 20 or so pills that she had needed to digest her food. This past year, she changed to a newly approved drug called Trikafta which addresses both of the mutations that caused her CF.

With the medication, Penny is able to gain weight, her lung function is through the roof and she has avoided a hospital stay since she was 4 months old, which is exceedingly uncommon for CF patients.

These drugs have been a true miracle for our family, and Penny is absolutely thriving! We no longer worry about her life expectancy and expect her to grow up and become whatever and whoever she wants.

This miracle has a big price tag, about $25,000 a month.

The company that makes the drug, Vertex Pharmaceuticals, offers a copay assistance card to help patients afford the drug. This helps our family immensely and without it I doubt we could afford the medication.

Then we heard from our insurance company Our insurance company implemented a “copay accumulator program,” which is great for the insurance company — and a huge financial threat to families like ours.

Basically, copay accumulator programs allow insurance companies to accept financial assistance from drug manufacturers, but they don’t allow this assistance to go toward a patient’s insurance deductible. That means, after the bill is paid, the insurance company essentially “double dips” and is paid for our deductible twice, once by the pharmaceutical company and once by us.

The manufacturer pays the same amount regardless, but the patient is the only part of the equation who loses.

For my family, not having this critical assistance count toward our deductible could result in us losing access to a drug that keeps my daughter alive and thriving. Insurance companies are taking away a critical source of financial relief that thousands of Utahans rely on.

My husband has a good job as an engineer, and we have still gone into medical debt trying to keep our daughter healthy. Families that are in less financially secure situations will soon be choosing between attending vital multidisciplinary cystic fibrosis clinic appointments and filling prescriptions that help their children live or putting food on their tables and paying their mortgages. These are decisions no parent should have to make.

With a simple, straightforward reform, the Utah Legislature can end this unfair and unnecessary burden on patients and their families. Legislation backed by the Utah All Copays Count Coalition — a coalition of dozens of Utah groups representing patients from across the state — would ban copay accumulators.

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Insurance companies would still get paid, patient assistance programs would pay the same amount, but the bill would prevent families from going bankrupt by this anti-family policy.

A dozen states have already instituted this commonsense reform and Utah can be lucky No. 13.

To the Utah Legislature — this one, simple bill can show Utah families that you will put us first in 2022 with the ban of copay accumulators. This year holds the promise to be a landmark year for Utah patients and the vital issue of drug affordability.

Jen Hepworth lives with her husband and four kids, including Penny, in Layton.

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