Like most parents, Jenna Gay would pretty much do anything to protect her kids. She just never expected “anything” would include battling a health insurance company.
Gay has two boys, both of whom have Noonan Syndrome, which is a genetic disorder that can affect the way kids’ bodies use growth hormone (GH). This means they may need more of it, even if they technically have the same amount as other kids.
But Gay’s insurance provider refused to pay for GH prescribed to her 6-year-old son, Brody, unless he submitted to testing that proved he needed it.
“I explained to the reviewers denying the meds that the deficiency test is unnecessary because, even if Brody is not deficient, the research shows he should still be approved based on his diagnosis of Noonan Syndrome,” she said. Not only was the test unnecessary, Gay argued, it would also scare a little boy who was already spending way too much time in doctors’ offices.
The insurance company disagreed, and denied her appeal. Fortunately, Brody’s endocrinologist connected Gay with a patient assistance program that covers the cost of Brody’s HG.
Unfortunately, Gay’s story is far from unique.
According to a 2021 survey conducted by HealthyWomen, 32% of those surveyed reported being told by their insurance company that it wouldn’t cover a medication, while 31% were told they needed to try another medication first before insurance would cover a prescribed medication.
Given how many people dealt with an insurance company’s unwillingness to cover needed medications, it’s not surprising that 44% of survey participants reported relying on help from a patient assistance program, co-pay card or coupon to pay for medicine that otherwise would have been too expensive.
The findings of this survey underscore what Gay and many others have learned the hard way: Practices used by insurance companies to maximize efficiency and minimize cost don’t always benefit the patient and can make getting the medication you need difficult — if not impossible.
While it may seem like it’s up to your healthcare provider (HCP) to decide which medications are right for you, insurance companies actually play a big part in the process. This is because most of them rely on utilization management (UM), or the use of certain techniques to manage the cost of care.
In theory, UM is designed to provide patients with quality health care at an affordable price, but the practice sometimes ends up saving the insurance company money at the expense of the patient. In other words, insurance companies can decide which medications you’re allowed to use based on what’s cheapest for them — regardless of what’s best for you.
One UM technique that can be particularly challenging for patients is step therapy, where an insurance company requires that you try one or more cheaper medications before they’ll cover the drug first prescribed by your HCP.
For many people, step therapy means being forced to go without the medication that would work best for them. Of the 31% surveyed who said they were made to try a medication first before insurance would cover the original prescription, the majority reported stopping the medication because it didn’t work for them.
PA is the process insurance plans use to decide whether to cover certain medications. Just as with step therapy, the PA process often requires the patient to try cheaper — and potentially less effective — medications before the insurance company will approve a prescribed medication. It also involves a lot of work on the part of HCPs.
“Getting prior authorizations from the insurance company is very time-consuming for both the doctor and the pharmacy,” said Richard Kilmer, RPh, a pharmacist who has spent nearly five decades helping people in underserved communities get the medications they need. He estimates that HCPs spend about 20% of their time dealing with insurance issues, including PAs and trying to find a medication that will be covered.
Even when medication is covered by insurance, the cost may be too high. One in three people who responded to HealthyWomen’s survey have stopped taking a prescribed medication because they couldn’t afford it, and two in five have turned to a patient assistance program, co-pay card or coupon to get medicine that otherwise would have been too expensive.
Such was the case for Doreen Orist, 62, a retired arborist in Crystal Lake, IL. When she was diagnosed with multiple sclerosis (MS) at 53, Orist discovered that even with insurance, she couldn’t afford the medications she needed. So she asked for help.
“The MS Association connected me with a premium payment resource,” Orist says. She also received a year’s worth of free medication from the company that makes one of the MS drugs she takes after her doctor suggested she contact them directly.
For people without access to assistance, an inability to afford medicine can be devastating. Kilmer points to the high cost of treating diabetes, a disease that disproportionately affects Black, Hispanic and Asian people in the United States.
“Diabetes treatment is expensive even with good insurance,” Kilmer said. “For people who pay out of pocket, it’s unreachable.”
Most insurance plans allow patients to appeal the decisions they make. Two in five people surveyed successfully appealed a decision to not cover a prescribed medication, and one in three were able to get the medicine within a week of winning their appeal.
Gay encourages people to take a stand with their insurance providers, even though they might lose. “You are helping future families and patients every single time you educate a review board, especially when it comes to rare diseases.”
Patient Advocate Foundation
This resource was created with support from Eli Lilly.