Tips and Resources to Keep Track of SCD Health Information

Sickle Cell
Written By Christian Strohm
 
   

More Programs Featuring Maya Bloomberg

In this program:

Keeping track of sickle cell care information can be challenging for patients and care partners. Dr. Marwan Shaikh and hematology nurse practitioner Maya Bloomberg share ways to organize care aspects like sickle cell disease medications and financial resources.

Transcript

Interviewer:

Out of all of the different doctors visits and the medications, are there resources to help people keep track of when to fill their prescriptions and keeping their medical information on hand?

Maya Bloomberg, APRN:

There are different apps you can download for...a lot of the medications have to go through specialty pharmacies, usually the more expensive the drug, it has to go through a specialty pharmacy, not a retail pharmacy. And you can imagine they have an incentive to make sure patients are filling all of their prescriptions every month, so the specialty pharmacies are really good resources to make sure you make your refills and your deliveries appropriately, but they can also connect you to different financial resources like copay assistance programs. So at the end of the day, these...you've mentioned how expensive these therapies are, and the more rare condition is, the more expensive that therapy is going to be. Because there are less patients who can necessarily benefit from it, so knowing the financial resources so it can be affordable is so important, because what's the point in having the product, if it's not accessible to patients? There are definitely financial aspects and resources that patients should be aware of. 

Dr. Marwan Shaikh:

A simple easy tip is just a plain sheet of paper. Patients come to me with a list of their medications and medical problems all written down or typed on on a computer, that's the most beautiful thing. It saves so much time for everybody, we love it, but just having that written down, it's just one easy way to kind of keep track of things.

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Christian Strohm
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