Dear Friends: It finally happened! We finally got a foot in the door with Congress! On Monday, October 23, 2017, I met with Congressman Tom O'Halloran of Arizona regarding the problem of individuals with rare diseases being unable to afford their life-saving medication, particularly if they are on a government-assisted RX plan such as Medicare Part D or Medicaid, because of the anti-kickback provision of the Social Security Act which prohibits persons on government-assisted RX plans from receiving direct financial assistance from the drug manufacturers. The Congressman appeared to understand the issue, and to understand that it was a very large problem in the US. I also advised him that I had attempted to schedule meetings with the actual decision-makers, Rep. Kevin Brady of Texas who chairs the House Ways and Means Committee; Sen. Mike Enzi who chairs the Senate Budget Committee; and Sen. Bernie Sanders of Vermont who is the Ranking Member of the Senate Budget Committee,, all of whom have the final control over Medicare, to no avail. He requested that I send him the emails that have gone unanswered and I agreed to do so. Unfortunately, he left it as a "Don't call me, we'll call you" situation, but we will not be deterred by that. If I do not hear from him within the next three months, I will be calling his office for an update. My next step is to contact Sen. Jeff Flake. I have already reported on my ineffective efforts to engage Sen. McCain, but now he has his own health problems and will soon be replaced. You can be assured that I will be in touch with his replacement as soon as s(he) is seated. Please continue to flood your congressional representatives and senators with telephone calls and emails, and sending this petition to your social media friends and contacts. WE WILL WIN THIS BATTLE! Best regards, Susan