Advocating in Changing Times

When you live with a bleeding disorder, there are many things that are out of your control. When the next bleed will happen, how long a hospital stay will last, what the results of the blood work will tell you, and how much you will pay per unit of factor, just to name a few. Once upon a time you were able to choose the company who would provide your factor, supplies and nursing.

When Julian was 5 years old, in 2001, our insurance company decided we could no longer use the home care company we had been using the past few years. This was a company that provided excellent nursing, customer service and convenience for our needs. I worked in a school district at that time, and another colleague was going through the exact same thing with her son. We had to insist that a meeting be held to discuss our situation.

We were both in attendance pleading our case and even brought 8 x 10 pictures of our sons, who were little and gorgeous. I thought it would be important to bring our boys into the room via photos, so that they were  seen as more than a number. The representative from the insurance company would not look at the picture of my son, and as I was speaking to him I said, “Please look at this picture. He is the one who will be getting less than he deserves.” 

I’m still not sure how we managed, but the appeal went through and our home care company remained available. Nowadays it’s not that easy. This year I have been forced to use a specialty pharmacy that I had never heard of that has “hemophilia expertise.” My immediate thought was “Well, let’s see how much expertise.” Our insurance company did not bother to find out what they meant by expertise.

Our former provider had cared for both my sons for more than 13 years. I knew the pharmacist well, and she went above and beyond for my sons.  Not just in the usual ways of packing a shipment well and calling ahead to remind us about orders, but she was truly a “hemophilia expert.” She worked only with patients who had bleeding disorders, and when it came to inhibitors, she was always on top of the latest findings and treatments. There were numerous times I called her with ideas from our doctors to get her input, and many times her suggestions not only were considered, but put into action.

A lot of specialty pharmacies and home care companies look good on paper, but when you get down to the details of what is required for a chronically ill family to function 24/7, every family has unique needs that must be met. Now that my sons are in a good place with their health and do not require regular nursing, what we are forced to use works.

If you are not happy with the choices that are dictated by your insurance plan, gather your information. Document your clinic visits, bleeds, shipments that are not correct, nursing issues, and anything that keeps you from treating your bleeding disorder. Talk to your local chapter for direction. They may even know of someone who has had a similar experience and can put you in touch with them. Reach out to the Hemophilia Federation of America and the National Hemophilia Foundation. These organizations work tirelessly for the community to ensure patients receive the necessary care.

Advocating for choice is not easy, but when the care of your bleeding disorder is at risk, your voice is the strongest voice that can initiate change.

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Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to hemophilia.