Showing Appreciation for the People Behind the Scenes

Showing Appreciation for the People Behind the Scenes

Cazanadra Hemophilia

I am a musician who has played in orchestra pits, wind ensembles, chamber groups, and orchestras. I even played antiphonal oboe one Christmas! Music is powerful. It transforms you and allows you to escape for a few hours from the regular happenings of the day.

However, most people don’t realize the work that goes on behind the scenes to produce a performance. Those people you never see set up chairs, create the programs, find advertisers, sew costumes, and run sound and lighting. Someone is always working quietly in the background for the greater good.

In my world of hemophilia, we have some amazing people who work to make sure Julian’s and Caeleb’s factor and medications are delivered to our doorstep every month. These people live with a phone glued to their ears as they go through prompt after prompt before speaking to a “live” person at the insurance company to answer their questions.

Caeleb’s new medication, Hemlibra (emicizumab-kxwh), is new to the market. You would think that because it is FDA-approved, insurers would make it easy to acquire, but I have not found this to be the case.

Many insurance plans have carve-outs, exclusions, formulary restrictions, and many other cost-saving measures. And with treatments for bleeding disorders being some of the costliest in the country, it’s a frustrating process to access a new therapy that will be cost-saving in the long run.

When you have a bleeding disorder and require factor or nursing services in the home, you need to choose a home infusion company to meet your needs. The insurance company will often only give you one or two to select from, and these companies normally assign a patient care coordinator to you and your family to ensure that you have factor and supplies on hand. They even call you when it is time to order.

These coordinators have reimbursement specialists on their team who make the phone calls and use the insurance “lingo” to get answers from the insurance company. As a mom who is not trained in reimbursement issues, this is an area that stresses me out, so I am fortunate to have someone to work out the details behind the scenes.

While money is important, when you have a home infusion company that sees you and your child as a person rather than a source of revenue, you know you have chosen the right provider.

I was recently on a conference call with my behind-the-scenes people and my insurance company as we tried to get Caeleb’s Hemlibra. When I heard my reimbursement specialist practically jump through the phone correcting my insurance provider, I knew I had the right team in place! These people see my son and know what he needs.

These people working behind the scenes are tremendous. They take the worry and pressure of insurance issues off my plate. I can’t begin to express the appreciation I have for the work they do. I’m glad I have them in my corner.

Have you thanked your behind-the-scenes folks lately?

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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.

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Cazandra Campos-MacDonald is a motivational speaker, writer and patient advocate for families with bleeding disorders. She blogs about the journey of her two sons with severe hemophilia and inhibitors and has written articles and blog posts for numerous publications. Cazandra's older brother, Ronaldo Julian Campos, died of complications from hemophilia as an infant. She lives with her family, Rev. Joe MacDonald, Julian (21) and Caeleb (12) in Rio Rancho, New Mexico. You may follow her blogs and view her TEDxABQ talk at www.cazandramacdonald.com.

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