After my son was diagnosed with Alagille syndrome (ALGS), we realized how quickly the medical expenses piled up. Within the first few months, we exceeded his insurance deductible and owed a decent amount of money to the children’s hospital. The medications were paid through a copay, but then my husband became self-employed, and we changed our insurance.

After we changed our insurance, we realized how much it can affect expenses. We went from paying copays for all medications to being denied for coverage because the medications were compounded. It became a very frustrating time in our life. Here we were with a sick baby who needed these medications to give him the best quality of life and try to prevent a liver transplant, but insurance was denying all medications. They even denied the specialized formula he needed. 

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My family was in a good spot financially, and we were able to afford the medications monthly, but it was not sustainable to continue to pay over $800 a month for medication, in addition to paying for necessary doctor’s visits. I knew we would never qualify for Medicaid but thankfully a neighbor told me about a Medicaid program for sick and disabled kids. The program only looked at the child’s medical condition and any specific income the child made. I hated the thought of applying but knew it wasn’t feasible to continue to have all our disposable income go towards medical expenses, so I applied. 

To my surprise, the application process was easy. I filled out the paperwork on my end and had his doctors fill out their portion. Since they’re well versed in ALGS they were able to speak on behalf of all medical concerns relating to ALGS that could pose an issue at any time in life. It didn’t take long to hear back after the submission, and we were elated to learn he was approved. 

The difficult part was choosing a plan. They gave us 2 options and we had to figure out which one we might be able to use out-of-state since our hospital was not local.  We initially picked a plan that the hospital didn’t take, but since it was within 30 days of selection, they allowed us to change plans to the hospital’s accepted plan. I hated the thought of using secondary insurance for any medical issues unrelated to ALGS like an ear infection, but once you are enrolled in the coverage it must be used for all medical coverage. 

When we received the approval, it was a relief. Any time my son needed medical insurance they would run our primary insurance first. Any cost our primary insurance that would be denied would then be run through the supplemental insurance coverage.

Secondary insurance has been a blessing for our family, especially with the financial expenses related to a liver transplant. If we didn’t have the opportunity to participate in this plan, I feel my family would be in a different financial situation and we would’ve fallen into financial struggles and debt to try to get my son the medical care he needs and deserves.