Four years ago, I suffered a traumatic brain injury as a bystander in the blast zone of the Boston Marathon bombing. My health issues were severe, chronic and painful. But the pain was made even worse by my insurer’s decision to deny access to the medication I needed. As Congress continues to discuss healthcare reform, I urge President Trump and lawmakers to limit third-party interference in medical treatment and ensure no one has to endure an experience like mine ever again.
I was on the finish line of the marathon when the bomb exploded. In the days and weeks following the attack, I visited more than ten different doctors for medications, physical, cognitive and mental health therapy to deal with my frontal lobe brain injury, hearing loss, lower back injury, loud ringing in my ears and severe post-traumatic stress disorder (PTSD). So-called “invisible injuries” like mine often take the longest to diagnose, are the hardest to treat, and need a variety of treatments to even partially heal. Healing is usually a lifelong marathon with no finish line.
Dealing with the day-to-day impact of these health issues was bad enough, but the pain was compounded by my health insurer’s decision to override my doctor’s advice.
For years following the bombing, I had been managing severe migraines, which were completely debilitating to my everyday life. My doctor and I could never understand why the medication he initially prescribed failed to reduce my migraines and mitigate the chronic pain I was suffering.
Finally, after comparing notes with a friend about her own migraine medication, I realized my insurer had secretly forced my pharmacist to switch my prescribed medication to an alternate drug without ever notifying me or my doctor. This is a perfectly legal policy referred to as therapeutic substitution.
For years, my doctor and I falsely assumed that the medication he prescribed for me was not working correctly, when the truth was that I was never even given the specific medication my doctor felt was best for my condition. It is not uncommon for insurance companies to require a patient to try a different treatment before allowing the patient access to a medication or treatment that the doctor has prescribed. Pharmacists can be ordered to provide cheaper alternatives to the prescribed medication and the pharmacy does not have to tell the patient or the doctor about the switch.
After a long and arduous process, my doctor and I were able to navigate my insurance company’s regulations and finally gain access to the medication he originally prescribed. Our efforts paid off, but I will never get back the years of unnecessary suffering I endured.
My suffering was preventable. This is one of the reasons I now spend my days advocating for patients with chronic pain, and working to broaden access to medical treatments. Regardless of whether broader healthcare reform takes place, we must restore the rights of doctors to treat patients without outside interference.
Simply put: Insurance companies should not have the right to come between a patient and their doctor. If Congress wants any hope of effectively reforming our healthcare system, it should strip insurance companies of this right and affirm that patients and their doctors have the ultimate power over treatment decisions.
Lynn Julian Crisci was a survivor of the April 15, 2013 Boston Marathon bombing. She is now working as a patient advocate for the U.S. Pain Foundation, the Massachusetts Resiliency Center, and Leaftopia.
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Healthcare reform must end interference in the doctor-patient relationship