Annie Kennedy's Blog – November 2017 Archive (7)

PPMD Signs Letter to Congressional Leaders re: National Defense Authorization Act (NDAA) Language

Earlier this month, PPMD and other advocacy organizations joined 180 U.S. Representatives and 54 U.S. Senators to request the removal of language included in the Senate version of the National Defense Authorization Act…
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Added by Annie Kennedy on November 20, 2017 at 6:30pm — No Comments

Updates in Duchenne Newborn Screening Efforts

Earlier this month, I testified on behalf of PPMD and the national Duchenne community before the Advisory Committee on Heritable Disorders in Newborns and Children – the U.S. federal advisory committee on newborn…

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Added by Annie Kennedy on November 20, 2017 at 6:30pm — No Comments

Action Alert: If Passed, Proposed Tax Plans from Both Houses Will Affect Duchenne Community

Call & Email Your Senators Today!

Both the House & Senate have now released their Tax Reform proposals, each with variations of similar policy impacts and changes that we feel an obligation to alert you to. It is anticipated that both Chambers will move this legislation swiftly and work to complete their votes during the week…

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Added by Annie Kennedy on November 15, 2017 at 1:46pm — No Comments

Anthem Revises Policy for EXONDYS 51, Deemed Medically Necessary for Ambulatory Patients

Progress! Today, Anthem issued a revised policy regarding Sarepta’s EXONDYS 51. In the revision, Anthem declared EXONDYS 51 medically necessary for the treatment of Duchenne muscular dystrophy when all of the following criteria are met:

  1. Individual has a confirmed diagnosis of Duchenne muscular dystrophy; and
  2. Individual must be ambulatory (with or without needing an…
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Added by Annie Kennedy on November 9, 2017 at 9:58am — No Comments

"My Journey on the PPMD Adult Advisory Committee"

Ever wished you could change the world – or at least your piece of it? Been looking for a way to engage a bit more? Have personal experience that you’d like to see be better reflected in national policy and program efforts?



Hear first-hand what it's like to serve on the PPMD Adult Advisory Committee (PAAC) from current members…

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Added by Annie Kennedy on November 8, 2017 at 2:30pm — No Comments

Action Alert: Proposed Senate Tax Plan & the Direct Impact on Our Community

Call & Email Your Senators Today!

Yesterday, the Senate released the Tax Cuts and Jobs Act which includes many issues that we feel an obligation to alert you to.

 

While PPMD does not typically engage in legislation related to tax reform, this proposal (being referred to as…

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Added by Annie Kennedy on November 3, 2017 at 10:00am — No Comments

Update on Formal Dispute Resolution Process For Ataluren

On October 25, PTC Therapeutics shared the news that the FDA had issued a Complete Response Letter regarding their application for ataluren, noting that FDA had stated that “an additional adequate and well-controlled…

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Added by Annie Kennedy on November 2, 2017 at 9:30am — No Comments

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