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Infusing Love: Knowing How and When to Advocate

Infusing Love: A Mom's View - A blog dedicated to mothers of children with bleeding disorders.

This past May our family was invited to attend the HFA Patient Fly-In to Washington, DC. The patients and caregivers were briefed on the talking points the evening before our scheduled meetings with our Senators and Representatives. As you know, health care is a hot topic and there were many talking points that needed to be discussed that affect the bleeding disorders community. One of the big talking points for our family was keeping the ban on annual and lifetime caps and step therapy. We met with both our Senator and Representative during our visit. They were very receptive and understanding to our cause and reasons for advocating. We went home feeling we did the best we could to put a face to bleeding disorders so that the Senators and Representatives would remember our community when voting for the BCRA (Better Care Reconciliation Act.)

jen_advocatesThe following week we had some devastating news from our insurance. For the last two years, our son had been on a clinical trial for a long lasting factor. He had just finished the trial before we left for DC. The insurance letter we received denied coverage on the new medicine until he failed on a different factor product. It was the exact scenario we had been talking with our Senators and Representatives about just days before!

At the Patient Fly-In, we discussed exactly what fail means in relation to step therapy? Is it a certain amount of bleeds? And at what bleed severity is the drug considered failing? This was something that no one could answer. For a patient with high cholesterol it might make sense to try a particular product, with the definition of failing being continued high cholesterol. For a patient with a bleeding disorder, to fail could mean damaged joints or even death. This was something that we would not let happen.

So I called in the troops. I immediately phoned Katie Verb, Director of Policy & Government Relations for HFA, our local bleeding disorder chapter, the social worker at the HTC (Hemophilia Treatment Center), and my son’s hematologist. I let them know what was happening and asked what we could do to fight this. We were given information about cost share programs for our preferred product, started an appeal process with our insurance, and was informed our son’s hematologist requested a peer to peer meeting with our insurance company. The bonus of being on a clinical trial was the data that was collected over the two years. The data that showed it was a workable therapy for our son’s bleeding disorder. The peer to peer meeting worked to our benefit and our son was approved to continue with his current factor therapy.

We were elated but the experience left us feeling slightly deflated. If we had not known who to contact or how to fight insurance we would have had to accept what the insurance dictated and that is not okay. I’ve said this many times…yes, our family is one tiny voice in the room with many but we were persistent and loud! If you find yourself in a similar situation reach out for help from HFA, your local chapter, and/or your hematologist. They are here to help you! Don’t settle for what insurance wants you to use. Fight for what you want to use!


Jen lives in Ohio with her husband, Joe, and their three children: Evelyn (21), Nora (14), and Jackson (7).

*Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers.

 

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