Kate interviewed Izzy, a student on Medicaid, who had major problems getting the medication she needed. The States specific Medicaid just worked too slowly to accomodate a student traveling away for school. Here’s Kate….
There is never a convenient time for those with a diagnosis to be pulled away from their daily life, whether that be going to work, school, or participating in family needs. But immediate access to healthcare is hardly ever a choice, and for many with chronic illness, there is no such thing as a good time for uncertainty in coverage.
This was precisely the case Isabella experienced. After her dad passed away from a battle with cancer, Isabella and her family were promptly kicked off his employer-based insurance plan. When most families would be consumed with family arrangements and time to grieve, Isabella had to ensure she would still have access to necessary medication that keeps her alive.
DENIED A CHANCE TO GRIEVE
As a Type 1 Diabetic, Isabella relies on several devices and medications that can manage her blood sugars, like a pump, continuous glucose monitor (CGM), and insulin. Without these devices, Isabella could fall into life-threatening diabetic ketoacidosis and other severe complications. Just two weeks after her father’s passing, she became uninsured, falling into a chaotic spiral to receive care thousands of miles away from home.
Though her family was living in Pennsylvania, Isabella went to college in Seattle. When she made this decision, she, like most people, didn’t consider how complicated it might make her life if she was thrown off her family’s plan.
“I completely took for granted the resources I had as a child when I didn’t have to pay for my medical things, and when we had my dad’s insurance.”
WASHINGTON STATE MEDICAID
Immediately, she began the enrollment process for Washington’s Medicaid program, AppleHealth. Because she was 18 years old with unusual circumstances, it was relatively easy for her to join this program. Even when she was accepted, being tied to the Medicaid system provided its own set of challenges.
While her enrollment began in March, she would soon be heading back to Pennsylvania for summer break. Because AppleHealth is a state-based program, Isabella was unable to fill provider prescriptions for insulin across state lines. At the same time, she wasn’t able to enroll in the Pennsylvania Medicaid program because she would only be home for three months and didn’t want to risk losing the ability to re-enroll in Washington once she returned to school.
Isabella coordinated plans to have friends in Seattle continue to fill her prescriptions and send them to Pennsylvania. It was enormously stressful, not only because she was constantly worried about whether she would have enough medication, but also because if an emergency did arise, she wouldn’t be covered for care provided in her home state.
PENNSYLVANIA AND MEDICAID
“It takes up to 90 days for Pennsylvania to respond to an insurance application, and I couldn’t apply while I was living in Washington, so I had to go uninsured and stockpile whatever supplies I could.”
The college years are full of uncertainty, even with the most traditional college students. As she was studying Spanish, Isabella traveled abroad to Mexico for a semester, because an immersive experience was required through her curriculum. While she knew that it would require planning, she still shakes her head at how burdensome the experience actually was.
Because she could not prove that her income would not increase during her time in Mexico, AppleHealth refused to cover advanced prescriptions for insulin for more than one month at a time. “Insulin is something I will never not need,” she recalled, explaining the frustration that caused her to again, have family members and friends traffic insulin across the border.
“I was put in a position where I had to choose between my education and health. I was required to study abroad to get my degree, but I couldn’t get the medication that keeps me alive.”
IT’S HARD BEING A STUDENT ON MEDICAID
The state-based Medicaid system functions as a safety net for those who are experiencing financial hardship and disability. The patients within Medicaid systems are often the most medically vulnerable and underserved. There is a structural expectation that a certain amount of suffering is necessary to qualify for a public assistance program. As highlighted by Isabella’s story, this paradigm of suffering restricts opportunity that would grant access to leave such a program. In other words, nobody should lose coverage as they switch from job to job, student to professional, or move from state to state.
Since returning home, Isabella is now on an employer-sponsored private plan but hasn’t forgotten the stresses that lack of coverage creates. I asked her about future job prospects, and if she would leave her current job to potentially find a plan with better co-pay programs or a more comprehensive selection of options covered. On the one hand, it was an enticing proposition, but on the other, it would open an insurances gap between occupations. As she explained it, having diabetes is stressful enough from managing the medical side, but not knowing whether your insulin will cost you $10 or $310, is an entirely different, and preventable, burden to carry.
“There exists a certain hierarchy of disability, and all of these people with a disability fight against each other for these ‘limited’ resources that aren’t actually limited at all. And the people at the top are just raking in the money, unaffected by anything that these people have gone through to get these resources.”
Kate Pecora is a senior honors student at the University of Massachusetts Amherst studying Healthcare Policy and
Political Science. She is an advocate for rare diseases, primarily in the neuromuscular space. Kate is diagnosed with Spinal Muscular Atrophy Type III. She is currently traveling across the country (sometimes virtually) in search of the most compelling stories of patient access, affordability, and quality. Ultimately this will become a book that will educate students on the importance of patient perspective. Instagram Facebook Twitter
