This past month we had the fight of our lives. My employee insurance runs February through January and my employer offered a new insurance plan this year. Much to our dismay, the insurance would not cover my son鈥檚 factor medication. Our insurance wanted our son to fail on three out of four factor products listed on their preferred drug list (PDL). This practice is also known as step therapy.

In theory, step therapy is put in place to save money. It forces the patient to try a less expensive drug that has been effective in treating patients with similar conditions and fail before he or she 鈥渟teps鈥 up to more expensive drugs. However, for a patient with a bleeding disorder, what is a fail? Not one person could quantify what a fail was to our son. Was a fail a break through bleed, or death, as dramatic as it sounds? We were not willing to experience what a fail was with our son.

Jackson has been on his current medication since 2015. It is an extended half-life product that works beautifully for him. He was part of the study trial and immediately continued using this product when it became FDA approved. Why would we want to switch products when it works so well? Furthermore, his doctor has prescribed his current medication for years. He is happy with Jackson鈥檚 annual bleed rate and how the product works for stopping a bleed. Why is insurance taking the prescribing power away from the doctor; a doctor who follows and knows my son?

The moment I was notified Jackson鈥檚 medicine was not covered I reached out to everyone. I spoke with our hemophilia treatment center鈥檚 nurse coordinator and social worker as they worked on an appeal. I spoke to the sales representative of the factor product to see what we could do to continue using his factor while we appealed. I contacted Hemophilia Federation of America鈥檚 Project CALLSso that our issue would be recorded and monitored. I reached out to our state senator, representative, state attorney general, and governor to let them know the problems our family was facing. I reached out to anyone listening.

We were able to continue on the manufacturer鈥檚 free factor program as the denial was being appealed which was reassuring. It eased our minds that we had access to his medicine for the time being. We attended our statehouse days and personally told our story to our state senator and representative. We had an advantage as we have attended many statehouse days over the years and had a personal relationship with both the senator and representative. They understood hemophilia and how devastating step therapy could be for Jackson.

It was exhausting. It had become a second job with the phone calls, follow up, emails, and texts. I felt horrible for the families who don鈥檛 advocate for what is right because they can鈥檛 or don鈥檛 know how. Where is their voice? I will be your voice for when you can鈥檛 speak or don鈥檛 know who to speak to. I will help you advocate for yourself or your loved one. Time and time again I鈥檝e heard the bleeding disorder community is small but LOUD! And I am loud. Think you can鈥檛 make a difference? Think again.

Why am I so certain that you can make a difference? Because if I can, you can: I am happy to report our denial was overturned and Jackson鈥檚 medicine was APPROVED!

You can do this. You can have a voice. YOU can advocate.


Jen lives in Ohio with her husband, Joe, and their three children: Evelyn, Nora, and Jackson. She is part of the inaugural HFA Advocacy Leadership Council.

*Note: 鈥淚nfusing Love: A Mom鈥檚 View,鈥 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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