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Big Win for Transplant Recipients

On March 10, 2014, the Center for Medicare & Medicaid Services (CMS) announced a decision to drop its proposal to remove drugs from protected class status under their Medicare Part D plan. This means transplant recipients will continue to have access to all immunosuppressive drugs under their Medicare Part D plan. This is a definite win for those patients pre- and post-kidney transplant.

On March 4, at the invitation of the National Kidney Foundation, the PKD Foundation joined three other kidney groups (Alport Syndrome, IGA Nephropathy Foundation and AAKP) in Washington D.C. for a day of advocacy to kickoff National Kidney Month.  The PKD Foundation was represented by many volunteers from around the country, including Board of Trustee members Klee Kleber and Senator Robert Bennett. 

This proposal was one of the topics covered with congressional and senate offices. The advocacy voice was heard!

The advocates also asked for support of increased funding of research into developing treatments and cures for the many causes of kidney disease. Additionally, advocates asked those in the House of Representatives to please consider joining the Congressional Kidney Caucus if they were not already a member and for those in the Senate in helping establish a Senate Kidney Caucus or joining one once it is established.


MODDERN Cures Act Reintroduced

Modernizing Our Drug and Diagnostic Evaluation and Regulatory Network

In September 2013, Rep. Leonard Lance (NJ-7) reintroduced the MODDERN Cures Act in the House of Representatives. One of the PKD Foundation's legislative priorities, this act aims to advance the development of new treatments for chronic and rare diseases, and is critical in the search for treatments for PKD.

Read the bill here.

The bill will:

  • Encourage research on treatments, which have been abandoned in the lab, but hold promise for treating diseases like PKD that have unmet medical needs. 
  • Encourage rapid development of new, safe and effective medicines.
  • Provide a pathway to bring promising new compounds to market.
  • Remove barriers that limit medical innovation.
  • Provide incentives for researchers to develop new diagnostics.
  • Ensure timely and appropriate reimbursement for new tests and treatments so that patients have access to the latest medical technology as soon as possible.
  • Establish a predictable timeline for the introduction of generic equivalents.
  • Advance creative solutions for developing companion diagnostic tests.
  • Create a system that rewards efficiency and effectiveness to benefit all people with chronic diseases.

The bill was developed in partnership with the National Health Council (NHC), of which the PKD Foundation is a member. The NHC provides a united voice for people living with chronic diseases and disabilities and their family caregivers.

What you can do:
Contact your local representative and ask them to co-sponsor the MODDERN Cures Act. To see the current list of cosponsors, click here. Visit Advocacy Action Center Tools for templates and other tools to assist you in contacting your representative.

Your Organization

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Phone: 800.443.9441 | Fax: 843.216.6100

©2014, PKD Foundation ·The PKD Foundation is a 501 (c)(3), 509 (a)(1) public charity.

©2014, PKD Foundation ·The PKD Foundation is a 501 (c)(3), 509 (a)(1) public charity.

The PKD Foundation is a 501 (c)(3), 509 (a)(1) public charity.
National Headquarters: 8330 Ward Parkway, Suite 510, Kansas City, MO 64114. Phone: 1.800.PKD.CURE
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Founded in 1982, our vision is that one day,
no one will suffer the full effects of polycystic kidney disease.

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