Dear E B on Managing Rare Diseases

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Dear E B on Managing Rare Diseases
Calendar29 December 2015

This post is part of our “Dear E.B.” series, in which Mercer’s very own advice columnist (“E.B.,” for Employee Benefits) responds to questions concerning health and well-being that are on the minds of employees across the country.

Dear E.B.,

I am new to the plan as I just changed jobs. My son has hemophilia and I’m very concerned about his welfare and continued treatment under a new plan. I know hemophilia is a very rare condition but I was wondering if you had any guidance on how I can assure he continues to get good care under my new coverage -- particularly since we have a high-deductible plan.

Feeling Stressed

Dear Stressed,

We can certainly understand your concern! Hemophilia is rare and requires substantial oversight to be managed. Fortunately, your employer does have an option for your situation. They’ve established a relationship with a patient advocacy group called The Hemophilia Alliance. As the name implies, they are a non-profit group devoted to assuring that hemophilia patients and their families get both clinical and financial support. They have set up a network of 141 Hemophilia Treatment Centers (HTCs) throughout the country -- many of which are affiliated with academic medical centers. They offer a “medical home” approach across medical and pharmacy to support patients with this disease. The National Hemophilia Foundation recognized their delivery model as optimal for best outcomes. 

The HTCs have special status regarding the sourcing of hemophilia medications, so your costs for hemophilia medications can be approximately 30-40% less than through normal channels depending on the medications needed. Your son would have access to a full-service care team with deep expertise in his condition. This option is completely voluntary and processed through your company medical administrator, so you would be able to keep track of your expenses and out-of-pocket costs. We recognize that assuring high-quality care for a family member with a chronic condition is a huge commitment and we hope you’ll reach out to your HR staff for more detail on how to access this program.

Advice by David Dross, Mercer’s Managed Pharmacy Practice Leader

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