A Prepared Army Wins the Insurance Battle
By: Kathy Morton
I was diagnosed with PAH during the spring of 2005. I am fortunate to be virtually symptom-free, and I continue to work full time. Since 2005, my employer-based insurance has changed providers four times, and I was declined coverage of subcutaneous RemodulinTM after each change. The first three times took only a phone call from my PH specialist to the new insurer in order to get the drug approved. The most recent change, however, was a different story.
The Persistent Denial
When I learned that I would be switching insurance once again, I filled out the required paperwork for continuation of care and pre-approval of my medication. As usual, I received a standard letter denying coverage. As with previous insurance changes, I emailed my PH specialist who was already aware of the situation. My PH specialist spoke to the insurance company’s medical director, who assured my PH specialist that my medicine would be approved.
A few days later I received a letter granting me a 30-day approval pending further evaluation, but this was followed shortly thereafter with a rejection letter from the insurance company’s pharmacist. After numerous additional phone calls between my PH specialist and the insurance company, I was informed that the insurance company was still refusing to pay for my medication. At this point I was told that I might need to get a lawyer.
My insurance company picked the wrong patient and doctor to mess with. We formed what I referred to as “my army” to fight the battle. I contacted a lawyer, Caremark, Accredo, and my employer’s insurance broker to work on my behalf as a go-between with the insurance company. My PH specialist was able to pull together a team from United Therapeutics, the legal department at University of Chicago Hospitals and the leading physicians who work with PHA.
It turned out that the insurance company was basing its decision solely upon the dosing information in the package insert for RemodulinTM. Since the dose that I use is higher than the dosing information listed on the package insert, they claimed that it was not medically sound; they would only approve the dose listed in the package insert, half of what I normally receive. Not only did we have to prove that the dose I received was typical for many PH patients, but we also had to prove it would be unsafe to lower my dose.
The Road to Victory
I worked with Caremark and Accredo to obtain copies of each prescription my doctor had written for RemodulinTM since I started on the drug in 2006. They also provided copies of every RemodulinTM-related bill they had on file and proof that all my previous insurance companies had paid for the drug at the higher dosage. I also had copies of Explanation of Benefits (EOBs) from my previous insurance companies, additional evidence that insurance had covered my medication at the prescribed dosage.
My PH specialist provided my complete medical records and made all the contacts necessary to connect the different groups of people helping me. She also gave us copies of academic papers regarding RemodulinTM dosing. United Therapeutics provided additional research articles and information. Finally, PHA provided a letter signed by its president and the leaders of its Scientific Leadership Council.
My lawyer compiled all the information and submitted it to the insurance company. Within a few days, the insurance company notified my lawyer and PH specialist that insurance would pay for the prescribed dose of RemodulinTM.
Some Lessons Learned and Take-Home Tips
The first step is always to contact your PH specialist. Often a phone call from them is all that is needed. They may also have contacts with the pharmaceutical companies and access to legal assistance. Insurance companies are big and tough, but when you get pharmaceutical companies and hospital legal departments arguing your case, they realize they can’t simply scare you away from a fight.
Know your state’s health insurance laws (and the terms of your health insurance contract). I am fortunate that my state has a mediation process, independent of the insurance company, which can be used when insurance companies deny claims. This would have been our next step, which gave the insurance company an incentive to treat me fairly in their internal reviews. It is essential to know how much leverage you have.
Ask for help. Besides my PH specialist and her resources, we involved my union’s insurance committee, my employer’s health insurance broker and a local attorney. They gave me direct support and helped ease the stress. Don’t panic, and don’t give up!
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