Ronny’s Story: Fighting Insurance Delays to Keep My Child Healthy

While some parents worry about keeping their three-year-old from touching a hot stove or skinning their knee, I worry about my daughter’s health insurer restricting her access to life-saving treatments.

At just 21 months old, my daughter Sam was diagnosed with systemic juvenile idiopathic arthritis (SJIA). A rheumatic disease that attacks children’s organs and musculoskeletal systems, SJIA is diagnosed in about 10-20% of children with juvenile arthritis (JA). Sam’s disease led to multiple hospital stays, including a one-month stint in the pediatric ICU. Due to the difficult nature of treating SJIA, Sam has had to try different types of medications and in various combinations to find the best balance of medicines to manage her disease and stay out of the hospital.

Prior authorization is an insurance cost-control tactic where healthcare providers must obtain advance approval from the patient’s health plan before the insurer will agree to cover the cost of treatment. Sam has been subjected to multiple prior authorization delays and denials for prescribed medications. Each time, it has either delayed treatment, prolonged existing hospital stays, or threatened to require new admissions just for access to these medications. It is an agonizing administrative nightmare that can lead to great harm for chronically ill patients like my daughter, by interfering and causing delays with the treatment plan her doctors deemed the most effective.

Often, the prior authorization process involves doctors from the insurance side that are not in pediatrics or rheumatology. Most recently, my daughter had another medication denied multiple times delaying her treatment, and after about 3 to 4 months of appeals, it was finally approved. Once receiving approval for her most recent medications, the insurance referenced an OB/GYN that reviewed “all information relevant to the appeal.”

Prior authorization is a flawed practice that negatively affects many patients across the country. This is a system in dire need of reform.

In my home state of Massachusetts, lawmakers have taken important steps to streamline insurance practices like prior authorization. State bill H.4929 was recently signed into law to reform step therapy, an insurance policy that requires patients to try and “fail” insurance-preferred medications before insurance will agree to cover the therapy originally prescribed.

Congress is also considering legislation to protect Medicare Advantage patients by streamlining prior authorization requirements that arbitrarily delay or deny access to medically necessary care. While this legislation would not help my daughter, it would be an important step toward accountability and could pave the way for prior authorization reform.

Until lawmakers come together and pass sensible insurance reform laws, my daughter and so many others living with chronic conditions will continue to suffer. That is why it is so important for patient advocates, like me, and patients to share their stories and advocate for better access to affordable rheumatic care.

My daughter’s story is just one of many. If you would like the opportunity to share your own, check out the ACR and Simple Tasks patient survey. This short, 5-question survey only takes a few minutes to fill out and can go a long way in supporting ACR’s advocacy efforts.