NPKUA is asking families to contact their members of Congress during the summer recess between August 6 and September 6, although there is no reason they can’t make contact after that. Family members are encouraged to meet with either a Congressional delegate or their legislative aide assigned to healthcare issues. NPKUA has assembled a variety of resources to refer to when contacting a Congressional delegation.
- For contact information for individual Representatives and Senators go to: http://www.npkua.org/TakeAction/YourLegislators.aspx
- For a helpful checklist of ideas to bring up at a legislative visit and what to say as an effective advocate, this is useful: http://www.npkua.org/images/MFEAmeeting_FAQ.pdf
- For information about how to organize and schedule an appointment and a script to request this meeting, go to: http://www.npkua.org/images/MFEAphone_script.pdf
- A talking points flyer that provides background information on the problems and challenges of treating IEM without the benefit of health insurance coverage, go to: http://www.npkua.org/images/MFEA3_2013.pdf
- Encourage family supporters to provide feedback about their advocacy efforts to the NPKUA legislative liaison, nicole.polkowski@npkua.org