I'm A Recovering Bad "Consumer" - Part 1

       At the Hemophilia of South Carolina 2012 Educational Symposium Family Weekend the fact hit me that I was a bad "Consumer" in the Hemophilia Community. First let me say, I've heard the term "Consumer" before, but I thought it just meant I was a consumer of blood products.  But the word "Consumer" means so much more!

     Michelle Rice, Director of Public Policy NHF, explained how to be a "Good Consumer". At the symposium we learned: A "Good Consumer" is educated and informed, not only about their bleeding disorder but about the rules and standards that apply to the various members of their care team (pharmaceutical companies, specialty pharmacies & medical professionals).

     Now, I was knowledgeable about the care I needed for my son: factor, supplies and doctor appointments.  That is all I thought I needed to know about!  

Before, I had Laithan, Marques was on prophy with his port.  We did our prophy schedule; he was doing great with no bleeds, so I felt I was doing a great job as a Consumer.  The home health care company would call every month and ask what I needed and I would just say send me “everything”.  I was on auto pilot for about 5 years. 

Twins using factor styrofoam boxes as seats

     I was very happy with my Home Healthcare Company and had no complaints, but I was not a “Good Consumer” because I didn’t know about  MASAC (#188) RecommendationRegarding Standards of Service for Pharmacy Providers of Clotting FactorConcentrates for Home Use to Patients with Bleeding Disorders.  I didn’t know to expect a Standard of Service.  Luckily, I didn’t have a problem, but I should of known what to expect from my home health care company.

     If I kept up to date on the recommendations from MASAC, I wouldn’t have been surprised when I tried to order my son a larger helmet last year, they could no longer supply them.  Knowing about changes like this is what it takes to be a “Good Consumer” and giving both my sons the best care to live a happy and healthy normal life.  Through my recovery I discovered a lot of information I've missed and now check regurlary for updates.

    In Part II, I’ll disclose other ways I'm recovering from being a bad "Consumer”.

     Do you check NHF website for updates on changes to stay informed?