Holy Grail

For more than a year, I’ve been trying to figure out how to get a high-end wound dressing called Hyalomatrix Wound Device. Several years ago, my podiatrist gave me a sample while the product was still in development by researchers in Italy. This dressing contains hyaluronic acid, which occurs naturally in the body and aids in formation of new skin. I had tried using it very successfully on an ankle ulcer that had refused to heal. It was the only thing that worked.

I have only a tiny bit left of that sample, which I’ve been rationing on my six deep digital ulcers. Once again, it seems to be the one thing that is helping my skin to regenerate as the large scabs very slowly recede. So, I’m anxious to get my hands on some more (or rather, some more on my hands).

For reasons unknown — perhaps I wasn’t persistent enough, or perhaps Medline, the company that manufactures this product, updated their website only recently — I could not find a way to reach a human being at the company who could tell me how to order it. That is, until last week, when I finally figured out how to get through. I spoke both to catalog sales as well as their home care team.

When I say this product is high-end, I’m not kidding. Although they wouldn’t give me an exact price over the phone, they also would not sell it to me because it costs in the four figures, and that certainly exceeds my budget, as well as the company’s ceiling for direct sales to individuals. I need to get it via a prescription. This led me to call my insurance company to see if they would even cover it. To my surprise, the service rep thought it might be possible – but I would need prior authorization.

So this created the next challenge: which of my docs to ask? The most obvious starting place was the vascular surgeon at the Wound Care Center who has seen me twice since May. She is a great physician, very supportive and knowledgeable. However, despite my best efforts, which included sending her detailed information about the wound care product, research backing it up and a prior authorization form, for reasons that I still don’t understand, she handed me off to the Wound Care Center and would not submit the form on my behalf. Honestly, I think she was too busy to actually read what I asked her to do. The Wound Care Center staff looked into it and discovered that their supplier does not carry this particular product. Dead-end.

I was certainly not about to give up. So Monday afternoon, at a previously scheduled appointment with my Boston Medical Center rheumatologist, I shared my digital ulcer saga and all the information. He was glad to go ahead and submit the form and write me a prescription if I get approval. I also asked him to please ask for an expedited review, to avoid the average 15-day wait for a response from the insurance company.

We have known each other for several decades, now. So much of getting what you need depends on good, long-term relationships with your health care providers. Fingers crossed (at least, metaphorically) that I’ll get approval and be able to fill the prescription ASAP. To be continued . . .

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com.

Comments

  1. Kathy Pulda says:

    So much of getting what you want is being a good advocate. Without that nothing else matters. Luckily you are.

  2. Charlotte Diep says:

    Hi, do you also have dental issues & what are your extra cares? I am having multiple cavities, cracked teeth, gum recessions & hard time finding a dentist who can work with scleroderma patients’ microstomia.

    • Hi, Charlotte. My main issue with my teeth has been resorption of roots, which has caused me to have extractions and implants. Fortunately, my dentist is familiar with scleroderma and very careful working in my small mouth. I also have dry mouth from Sjogren’s syndrome, but I take medication to help with that. I’m so sorry to hear of your struggle. Maybe your rheumatologist can direct you to a dentist who is more familiar with these issues.

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