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advocacy update

Advocacy Update - November 15, 2011
11.26.11

November 15, 2011

Advocates in Action

Wisconsin – Caledonia, Wisconsin, Laura Oliver along with her good friend and former Advocate of the Month Tom Chelius are scheduled to speak to Laura’s Representative Robin Vos regarding the oral parity access legislation in Wisconsin (AB 151 / SB 101). They plan to ask for his support on this issue in hopes of moving the bill forward.

Thank you Laura and Tom for your initiative and hard work!

Online Advocacy Training Series

Please join us tonight for Part 1 of our two-part training series.
Tuesday, November 15, 2011 at 7 pm Eastern/4 pm Pacific:
Action Center Tutorial

To join the webinar please click on the following link or copy and paste it into your Internet browser:
https://myeloma.webex.com/myeloma/onstage/g.php?t=a&d=967344147

Please enter your name and the Event Password: Action1
* Please note that the event password is case sensitive

The event number in case you need it is 967 344 147

IMPORTANT INFORMATION:

There are two options for the audio portion of this webinar:

  1. You may listen and view the presentation through your computer if it has speakers.
  2. You may listen to the presentation via the phone and view it via your computer (this is a good option if you plan to ask questions). Please dial 1-866-713-1165 and enter conference code: 041 092 30

Session includes:

  • Locating your Federal and State legislators
  • Legislator Bios
  • Navigating the Action Center
  • Issues & Legislation
  • And more!

Thursday, November 17, 2011 at 7 pm Eastern / 4 pm Pacific:
Advocacy 101 / HR 2746
Session includes:

  • What is Advocacy?
  • HR 2746: Cancer Coverage Parity Act background
  • How to schedule a face-to-face meeting
  • Do’s & Don’ts
  • And more!

If you haven’t yet signed up for Part Two of the series, please do so by emailing Meghan Buzby at mbuzby@myeloma.org.

Happenings on the Hill

President Signs Executive Order on Drug Shortages
President Obama signed an executive order directing the Food and Drug Administration (FDA) to broaden reporting of potential shortages of certain prescription drugs and to expedite regulatory reviews that can help prevent or respond to shortages. Under the order, FDA also will work with the Department of Justice, which will examine whether potential shortages have led to illegal price gouging or stockpiling of lifesaving medications.

The executive order requires FDA to expand its current efforts to expedite the review of new manufacturing sites and drug suppliers to help prevent shortages. It also directs FDA to take additional steps to require drug manufacturers to provide adequate advance notice of manufacturing discontinuances or other actions that could lead to critical shortages.

In addition to signing the executive order, the White House announced the president's support for the Preserving Access to Life-Saving Medications Act (S. 296 and H.R. 2245).  This bipartisan legislation would require manufacturers to notify FDA of any potential drug shortages.  According to the White House, early notification of potential drug shortages can help prevent a shortage from becoming a crisis by allowing hospitals, doctors, and manufacturers to take action to ensure medications remain available. Currently, FDA can only require drug manufacturers to disclose the discontinuation of a critical drug when the drug is available through a single manufacturer.

The IMF is aware that shortages of many medications are affecting patients throughout the United States. We are particularly concerned that patients currently being treated with DOXIL (which is approved in combination with VELCADE) are unable to receive this drug.   There is currently a waiting list for DOXIL that is available to prescribing physicians. If you are a myeloma patient who has not been able to get DOXIL, please call the IMF Hotline at 800-452-2873 to share your story and get further information.

The IMF advocacy team is actively monitoring S. 296 and H.R. 2245.  Further information about these bills is available on our web site at the IMF Advocacy Action Center.

 

For more information about the legislation listed above or any other IMF advocacy initiative, contact IMF’s Director of Government Relations, Christine Murphy at cmurphy@myeloma.org or 703-738-1498.


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