One day this past week, I was invited to join some PIDD patients, parents of PIDD patients, IDF and CSL Behring staffers to help promote a bill that would allow access for all to plasma products, in home settings, or in clinical settings. As we all know, many of us have been denied, or threatened to be denied access to this life-saving therapy. The actual bill will go before the legislators next January- but we are attempting to get the right people educated about it NOW. The goal is to get this bill passed in MN, and then use it as a template for the remaining 49 states.

We divided up in 3 smaller groups, and off we went to meet with the legislators that we personally voted (or not) for in the last election cycle. I can tell you that after asking me several questions about the authors, the bill number, explanation of PIDD and why we need plasma therapy, my state Representative told me he was on the same page. That was good news. TINY BABY STEPS.

I then spoke with my Senator, and she asked questions for about 15 minutes. Her questions were very focused on $$$$. How much does it cost, how often is it given, how long are you on this therapy, and what will the insurance companies response be to this bill. VERY GOOD POINT. Of course, they will NOT like it at all- and will most likely push hard to keep it from getting passed.

Similar conversations were going on with all of the patients and legislators throughout the day. I HOPE WE GOT THEIR ATTENTION!

I have been collecting stories about those who have been denied treatment, or have had a great deal of resistance from their insurance companies as they attempt to get treatment.

If you are willing to share you story to help us make this point, please comment here, or send me your story off-line with permission to use. Please include your state and your insurance provider in your comments.

Every single story will help us- and as we get more involved- we will need all of you to step up to the plate to help get this bill passed around the US.

Someone commented on the IDF Forum, “why don’t we have more awareness”? MS patients are about the same in numbers- but most certainly not in awareness.

Everyone has heard of MS- there are very few who have heard of PIDD.

It’s up to us as we have the time or energy to create media and public awareness by sharing our stories, educating others about our disease, helping with fundraisers, etc.

We know what we need to do- we just need the energy to do it.

We can’t afford not to do it.