Diane Lee’s Experience

(from left to right, Josh Schmidt, Yleana Hughes, Jessica klass,
 Sarah Fey, Jim Durr, and Diane Lee)

March 13, 2013

It was an honor to be selected to attend the National Hemophilia Foundation’s Washington Days on behalf of the Arizona Hemophilia Association this year.  The trip is a chance to really feel part of our democratic system of government while participating in a process advocating for our bleeding community.  This year the NHF had over 300 members attend to meet with the congressional leaders from all around the United States.  This was the largest turn-out for Washington Days they have ever had.  From Arizona, we were able to send a team of six and were able to meet with many of the Representative offices and Senatorial staff from Arizona. 
Our primary focus this year was to lobby for support of HR 460, The Patients’ Access to Treatment Act which would set regulations on insurance companies preventing them from creating a Tier IV prescription drug list in which they could charge a co-insurance of ten to thirty percent.  As you can imagine, this amount of co-insurance would make much of our factor and medications cost prohibitive to us even with insurance.
We also told our personal stories of how the local Hemophilia Treatment Centers (HTC)have benefited our families and requested that any cuts that may be made to budgets either spare or at least be fairly distributed across agencies.  The Center for Disease Control (CDC) and the Maternal and Child Health Bureau (MCHB) are agencies that fund and support our Hemophilia Treatment Centers and they have suffered deep cuts already.  We do not want any further cuts.

I was impressed at how receptive and respectful each of the offices were and how each staff member we met with expressed interest and was willing to listen to the constituent’s stories.  Many of the people we met with knew little of how expensive our medications were and I feel our stories helped to impress the importance of preventing the insurance agencies from pricing us out of our treatments. 
The trip was a fantastic opportunity for our Association to speak out and advocate for our community and I would be greatly honored to continue to speak out on behalf of our needs.


Together our voices cannot be ignored.  We will be heard!