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The Importance of Keeping a Paper Trail When You’re Living with Pulmonary Hypertension

July 2013

By: Charlotte McCabe
PH Patient

Charlotte McCabe

Charlotte McCabe

In July 2013, I began treatment with Tyvaso for my pulmonary hypertension. I had spent the two months previous to my start date jumping through all the hoops with my insurance company and specialty pharmacy. After being informed that my Medicare insurance would cover 100 percent of the cost of Tyvaso, and receiving a contract from my specialty pharmacy showing that my responsibility for the cost was to be “0″ percent, and that I would not need to look for financial assistance from the Caring Voice Coalition, I agreed to the contract. Then, my medication deliveries and training began.

Now, fast forward to July 2014. Out of the blue, I got a call from the specialty pharmacy telling me that my insurance company had changed their mind. As of Dec. 2013, they would only cover my Tyvaso at 66 percent, expecting me to pay the other 33 percent. That translated into more than $12,000. Yikes! After a few deep breaths, I said I would look into it and get back to them.

I learned the hard way, during my career in nursing, to keep paper trails on everything I did and everyone I interacted with, and boy am I glad I maintained that habit with my own health issues and interactions. I had every piece of documentation I was sent by both my insurance company and the specialty pharmacy providing me my Tyvaso. When my husband and I got back to the pharmacy billing representatives, we let them know that I had the original contract and all other paperwork from them documenting that I owed “0” percent for my medicine. I could literally hear the bean counters taking a proverbial “step back” as we told them this. They then asked me to contact Caring Voice Coalition to see if it was possible for them to authorize retroactive coverage of what was left unpaid. We did that and sent copies of everything I had to CVC. They, of course, were unable to help me out as they don’t do retro-assistance.

After many more conversations with the specialty pharmacy folks, including their nurse educator from our support group, we made it clear to them that this bill was not my responsibility, and they would have to find another way to get it covered. Low and behold, about a week after our last conversation, the billing people called to let me know that they had submitted this $12,000 bill to their own patient assistance program, and that the program would be covering that bill for my Tyvaso.

So, the moral of the story is keep all forms, documents and written communications having to do with all of your medical costs and any assistance provided. You may be very thankful you do. I certainly am.