Two Insurance Plans & I'm Still Fighting for My Son's Life!
Updated: Apr 9
By: Sara G., Taylor County
My son was diagnosed with Type 1 Diabetes when he was 3 years old. He’s now 12. I have always been his biggest fan and fiercest advocate. His diagnosis forced me to learn to navigate the complexities of private insurance companies and Medicaid. I have learned to fight so that I can keep my son alive.
Before my son was born, I didn’t know the differences between Type 1 and Type 2 Diabetes. I’ve since learned enough to write a book. Type 2 Diabetes is most often considered a consequence of lifestyle choices and can be managed with diet and exercise, although we now know that that Type 2 also has environmental and genetic factors as well. Type 1 Diabetes differs significantly from Type 1, as it is an autoimmune disease, where the persons immune system attacks its own insulin producing beta cells in the pancreas. Type 1 Diabetics’ bodies don’t produce enough insulin and needs to inject insulin to live. The problem arises for families like mine when insurance companies lump the two diseases together and issue restrictions on treatment as if the diseases are the same. They put limits on the amount and types of medications Type 1 Diabetics can have access to, regardless of the physician’s orders. In fact, my son’s endocrinologist told me early on that “doctors don’t treat the patients anymore; Insurance companies do. What we say doesn’t matter.” I was shocked, but I’m here to tell you that he was right.
I worked for the State of Florida and had employer-based health insurance when my son was born. Of the two plans offered, I chose Capital Health Plan (CHP) insurance. CHP is a popular heath care system in Tallahassee that covers over 100,000 people. They have a tight hold on the number of providers they allow in their network and make specialty treatment difficult to access. My son’s diagnosis came with layers of prior authorization paperwork and increased financial expenses in the form of co-pays. Each month he needed 4 to 5 medications all with $30 co-pays. This can add up to a small car payment. Six months after he was diagnosed, he qualified for Social Security Disability which comes with Medicaid insurance. Since we had private employer-based insurance, Medicaid was our secondary form of insurance.
I thought that we would be free and clear of any health insurance problems since we were covered by TWO plans. However, my experience has been the exact opposite. Medicaid has several restrictions and limitations on what they will cover and how much they will cover often resulting in financial burdens for families. Every Type 1 Diabetic needs a glucose monitor, test strips, and insulin. My son must check his blood sugar 8 to 10 times each day. This means he will use 250 to 300 test strips a month. Well, Medicaid will only cover 150 test strips a month. A 50-strip box of the Medicaid approved test strips costs $75 which I have to pay out of my pocket, if he exceeds the amount Medicaid approves.
Medicaid also has restrictions on the brand of test meters and strips they will cover. A nurse educator warned against me buying a less expensive monitor and test strips even though they were just as effective as the Medicaid-approved brand. She shared that her office sends their patients’ glucose meter reports to the patients’ insurance companies. If more than one glucose meter is used (for example, using the Medicaid approved meter with a less expensive version to cover the amount of testing needed), Medicaid will view this as a “lack of testing,” and only approve the amount of test strips that are indicated in the meter download. This is yet another example of insurance companies regulating patient treatment regardless of doctors’ orders. These are the types of meaningless restrictions that keeps families near bankrupt.
Medicaid rarely pays for new, more effective technologies that improve care for diabetics. It’s almost as if they want to keep sick people sick. When Medicaid does issue an approval, they create barriers that make it extremely difficult for people to qualify. For example, Medicaid approved and paid for my son to have the Dexcom G5 Continuous Glucose Monitor. When the manufacturer released an improved model, the Dexcom G6, Medicaid issued a statement that were not approving upgrades on glucose monitors or pumps for patients under the age of 14 and who had not had existing technology for more than 3 years. They never explained the rationale behind the restrictions. Were they best practices in the medical community? Did a medical panel recommend these restrictions? Was there a flaw in the new monitor? I asked the questions, but never received a response. They just want me to accept their rules and ignore any opportunity to improve my son’s health.
Restrictions and limitations also exist with private insurance plans. For example, State of Florida employees with Florida Blue Cross Blue Shield have CVS Caremark as a pharmacy benefit. Caremark only issues 90-day prescriptions. Medicaid, however, will only approve 30-day prescriptions. The only way to circumvent this and use my private insurance first (as mandated by law) a lengthy approval process had to occur which only provided a temporary approval from Caremark to fill 30-day prescriptions. To make the situation even more complicated, insulin only has a 28-day shelf-life after it’s been opened. So, you can count on two to three days a month where the insulin is less effective when Medicaid pays for your prescription. That’s asking families to take a huge risk! What if the insulin I have left on the last few days of the month is not enough? Is Medicaid asking me to risk my son’s life because of their 30-day policy? I’m his mom. I have to be prepared for every possible scenario. I must make sure that he always has what he needs which is why I have insulin stashed around my house for emergency situations. One vial cost me $750. How many families can make that sacrifice?
A few years ago, I made a tough decision to leave my job and got back to school full time. I decided to get my master’s degree in Social Work so that I could help families of children living with chronic disease better understand and navigate the healthcare system. I completed my internship at the local Metabolic Health Center that treats the pediatric population living with endocrine disorders. They had never had a social work intern, which was strange to me because this population desperately needs the kind of help social workers provide. Nearly every parent I met had experienced difficulty navigating the insurance system and struggled with the same questions. I’ve often wondered what families do if they can’t afford out of pocket expenses. Are parents skipping daily tests and lowering insulin doses?
I found that parents have learned to be innovative in their fight to keep their children alive. There is a “black market” for diabetes supplies where parents connect to trade and share medications. They have created a community where they are leaning on each other instead of relying on their insurance providers. People outside of the diabetes community often tell me to just ‘go to Walmart and buy the $25 over the counter insulin’ they have heard works so well. But I’ve dealt with this issue long enough to know that insulin effects people differently. It’s just like antibiotics; an antibiotic that’s prescribed to fight a staph infection is not going to work as effectively if you take it to treat an ear infection. I’m not willing to risk my son’s life, and I’m thankful that I don’t have to. But I understand that some diabetics are forced to make that choice every day.
As I fight the day to day battles with insurance companies, pharmacists, and doctors, I can’t help but think about my son’s future. His Medicaid coverage will end when he turns 18. He will roll off my employer-based insurance plan when he turns 26. What happens then? He needs insulin to live. Florida didn’t expand Medicaid which means that his only option for health insurance coverage will be through his job. And unfortunately, a good job with good health insurance coverage is not a guarantee.
Disclaimer: I want to acknowledge that the policies I reference in my story are as they were stated to me (usually over the phone or by a pharmacy rep). It is possible that the statements are not official policies of the insurance companies or pharmacies. However, I am sharing the information that was communicated to me.