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Exciting Times

These are exciting times- both positive and negative! Insurance companies and Medicare are squeezing our patients tighter and tighter, holding back and building new and sometimes subtle roadblocks to receiving care. However, IDF continues to increase its advocacy efforts on behalf of the primary immunodeficiency disease (PIDD) community to breakdown those barriers.

One of those efforts is where you are now – at the new IDF Advocacy section on our Website. The site was redesigned to help raise your awareness of issues facing the primary immunodeficiency community. It is a place to discuss these matters with other members of the IDF community and tell your story as it relates to these concerns. And perhaps most important, it is a place to get the resources and tools to become an effective advocate and commit to action.

You will notice that there is a Feature Story that will be updated periodically about major issues confronting the PIDD community. In addition, Hot Issues will highlight other issues of concern. This column, Policy Matters, will be more editorial and hopefully at times, provocative; giving political context and explanation of IDF advocacy issues and activities. And of course, I look forward to your comments and ideas.

A major highlight of the site is the IDF Advocacy Channel. This is where you can make a truly personal contribution to the Channel. We want YOU to participate by telling your story as it relates to some of the advocacy issues. For example, Ginny Job from Kansas had been receiving IVIG treatment for years, but when she turned 65 and became Medicare eligible, she had problems, as home infusion was no longer available. Ginny’s story is featured below.

We want your story if you have been denied an IVIG health insurance claim. We want your story if you have been denied treatment because you are on Medicare. Your story is important and we want everyone to hear your message!

The more stories the better. Not all will make it on the web page – there just is not enough room. And we have to limit video to no more than 3 minutes.

So, get out your camera and tell everyone your advocacy story. For information as to how to submit your video, Click Here.

- Larry LaMotte, IDF Director Public Policy

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Cool. I'm looking forward to keeping up with this blog!

We're so glad that IDF is blogging

I glad i found this page just so i can cshare my families succes story. My son was Diagnosed with Scids 4 years Ago and to this date he completely cured. We are so greatful for all the support this medical team provided to us. Also we as parents need to make people aware of ealy testing for SCIDs , we must pass the word.