I want to thank all of you for your support for this cause. The bottom line is that people who have rare or orphan diseases should be able to obtain their life-saving medications on an equal basis, regardless of the type of insurance they have or don't have. I gave my Congressional Representative, Tom O'Halleran (D. Az.) until after the holidays to get back to me with an answer after I had a discussion with him about this issue last October. When the holidays had passed, I contacted him and received absolutely NO RESPONSE. I tried a second time. Same thing. I have also attempted to communicate with Mike Enzi, Kevin Brady, Bernie Sanders and others on the Senate Budget Committee and the House Ways and Means Committee who have authority over Social Security and Medicare. Same result. Over 51,000 people have signed this Petition, and we will simply not be ignored. Neither will we simply disappear. This seems to be another case where it is going to take grass roots political action to get our legislators to stop lining their own pockets at our expense long enough to listen to what we have to say. To that end, I am currently working on the following: 1. Interfacing with groups who represent other rare/orphan diseases which require their patients to take unaffordable specialty medicines; i.e., Crohn's Disease/Ulcerative Colitis; Hepatitis C; ALS; Parkinson's Disease, etc. and forming a base of those who not only have the diseases but their families and friends as well; 2. Forming a non-profit corporation whose objectives are to: 1) spread the word about the unaffordability of specialty medications and the unequal treatment people insured by government-assisted prescription insurance programs receive in being able to obtain financial assistance with these medications due to the anti-kickback provision of the Social Security Act; 2) Organize peaceful public demonstrations at federal buildings across the US to bring the attention of the public to this issue, to be attended by the base--that is, those who suffer from the disease, their families and friends; 3) provide different colored T-shirts to be worn by participants in the demonstrations with the logo of the non-profit on the front and on the back: "I have" or "My [family member] has" or "My friend has" [name of disease] and I VOTE" on the back; 4) to raise funds to support the activities of the non-profit; 5) to culminate with a national demonstration in Washington, DC; and 6) whatever further activities are required to reach the goal of a Congressionally sponsored and supported amendment to the Social Security Act to allow patients with government-assisted insurance to be able to receive equal access to drug company sponsored financial assistance for specialty medications. 3. At this point, we are at the very beginning stages of putting this plan into action. As it goes along, we will keep you all informed. 4. Hopefully, all of you will be able to join in the demonstrations when they come to your city. Thank you all for your continued support. Susan