If I Had to Pay for This Medicine Out of Pocket, We Would be Homeless

Kaeana’s 12-year-old daughter has diabetes and a rare liver condition. Access to affordable medication is keeping her alive.

Kaeana’s voice cracks when she talks about her 12-year-old daughter, who is fighting both diabetes and a rare liver condition.

The medications that keep her alive would cost roughly $6,000 a month. But thanks to a pharmacy benefit manager, Kaeana pays just $40.

“If I had to pay for this medicine out of pocket, we would be homeless,” she said. “We would be dealing with poverty. We would be sleeping on someone’s couch, if it was available. We wouldn’t be able to live. We wouldn’t have a life.”

As a single mother, Kaeana relies on a pharmacy benefit manager, or PBM, to make sure her daughter’s medication is available and affordable. She obtains three months of medication at a time, and she is extremely grateful for the peace of mind it delivers.

“It’s very important to us to have access to affordable medication,” she said. “If we didn’t, my child wouldn’t be alive.”

The Danger of Diabetes

Diabetes is a disease that impacts how the body processes glucose, or blood sugar. High sugars can have wide-ranging negative impacts, causing everything from nerve damage and vision problems to an increased risk of heart attack and stroke, according to the Mayo Clinic.

Diabetes afflicts more than 34 million people of all ages in the U.S., or more than one in every 10 Americans, according to 2018 estimates from the Centers for Disease Control (CDC). Studies from 1999 to 2016 show that the prevalence of diabetes is increasing. About 21% of Americans who have diabetes do not know they have the disease.

Studies show that diabetes is more prevalent among men, as well as Native Americans, Hispanics and Black Americans. Rates also increase dramatically among adults over 65. It can also affect children. About 210,000 children and adolescents under 20 were diagnosed with diabetes as of 2018, according to the CDC.

Insulin, a medication that can help the body metabolize blood sugar, is a common treatment for diabetes, though only a small percentage of diabetics are insulin dependent. In 2018, about 2.9 million adults over 20, or about 11% of adults diagnosed with diabetes, were using insulin within a year of their diagnosis.

The medication is so important that it has become part of the national conversation in recent months. President Joe Biden has spoken often about the need for affordable insulin.

“The difference between nearly dying and thriving is the cost of one drug,” he said in a 2021 speech.

The Inflation Reduction Act passed by Congress and signed by Biden this year put a cap on insulin costs for senior citizens on Medicare, limiting the cost to $35 a month beginning in 2023. Seniors using other forms of insurance were not covered by the cap.

The Value of PBMs

Pharmacy benefit managers do much to help people with diabetes and many other illnesses. PBMs negotiate rebates from drug manufacturers, fight for discounts from pharmacies and promote the use of generic medications. They manage patient drug utilization, process prescription drug claims, manage the cost of expensive specialty medications, administer home delivery, work to reduce medical errors and develop pharmacy networks for health plan sponsors.

Often, this work results in substantial cost savings, as it did for Kaeana and her daughter. PBMs lower the cost of prescription medication by 40% to 50%, according to Pharmaceutical Care Management Association, a national organization representing America’s pharmacy benefit managers. PBMs save payers and patients an average of $962 per person each year, according to the association.

A National Bureau of Economic Research study called The Value of Pharmacy Benefit Management shows that PBMs create more than $145 billion in annual value. Without PBMs, the study found, employers, labor unions and other health plan sponsors would lose out on $58 billion in value each year.

 

For Kaeana, however, the value goes far beyond money. It represents real help for a situation that would otherwise be overwhelming and debilitating.

“I can’t believe that someone would have to pay $6,000 for medicine that’s needed,” she said, adding that “the reality is no one can just walk into a pharmacy and charge their medicine on their card. They actually need someone to fight for them.”

For Kaeana, that advocate is her pharmacy benefit manager.

“I am very fortunate to have a PBM that understands and actually fights for us,” she said. “If we didn’t have affordable medicine, my daughter might not be alive.”