Advocacy Updates

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| RESEARCH |

CDMRP-A Win for Myeloma Researchers!

Our advocacy team has been working hard to ensure myeloma researchers can continue to apply for research funding through the Department of Defense’s Peer Reviewed Cancer Research Program in fiscal year (FY) 2019. Since FY2015, myeloma was not a part of the program, but we successfully lobbied legislators for inclusion in FY2018. We are happy and proud to report our efforts have been successful once again for FY2019! The blood cancer topic area was included in the recent Appropriations bill that was recently signed into law by President Trump and myeloma research will continue under this program.

To make this happen, our team sat down to speak with House and Senate legislators on both sides of the aisle. We worked hard to ensure they knew how important myeloma research is and the benefits it provides not only to former service members, but also the entire myeloma community. We are happy to report, they were receptive! A bipartisan bill including this research funding was just signed by the President. In addition to preserving our spot in the program, the Peer Reviewed Cancer Research Program will receive an additional $10 million in funding in FY2019 and the bill also increases funding for the National Institutes of Health (NIH) by $2 billion. This is a big win for myeloma research! We look forward to informing researchers about this important program in FY2019 so we can move closer to a cure!

 

| VETERANS |

VAM Webinar on Blue Water Navy Vietnam Veterans Act of 2017

On Wednesday, October 24 at 3:00 p.m. EST / 6:00 p.m. PST, Veterans Against Myeloma will hold a webinar. This webinar centers around legislation to expand benefits for Agent Orange exposure to U.S. naval veterans who served off the coast of Vietnam from 1961-1975. H.R. 299, the Blue Water Navy Vietnam Veterans Act of 2017, unanimously passed the House and is currently up for consideration in the Senate. If passed, the bill would cover an estimated 90,000 Vietnam veterans who are currently required to provide proof of Agent Orange exposure during their time in service before benefits can be granted. Veterans who set foot on the soil of Vietnam or traversed the inland waterways of the country are granted a presumption of exposure, while Blue Water Navy Veterans are not. The webinar’s Guest Speaker is Mr. Paul Becker, a retired United States Navy Rear Admiral and the former Director for Intelligence, J2, Joint Staff. (http://www.thebeckert3group.com/)

Register here!

 

| FEDERAL UPDATES |

Pharmacy Gag Clause Update: Legislation to ban pharmacy gag clauses is moving forward!

Pharmacy gag clauses prevent pharmacists from informing patients whether or not their drugs would be cheaper when purchased without using their insurance. The House voted on September 25, 2018 to advance Senate passed legislation banning these practices. Cancer patients face some of the highest out-of-pocket costs and deserve to know when there is a cheaper way to obtain their prescriptions.

The House and Senate recently passed two different pieces of legislation to ban gag clauses. S. 2553, the Know the Lowest Price Act bans gag clauses in Medicare and it recently passed through both the House and Senate. Additionally, both chambers also held a vote on S. 2554, the Patient Right to Know Act, which addresses the issue for commercial plans. The bills will now be sent to the President’s desk to be signed. We would like thank everyone who has contacted their Members of Congress about this issue and will continue to keep you updated.

 

| MEDICARE |

Happy 15th Anniversary to Medicare Part D!

The International Myeloma Foundation was honored to partake in the MapRx Coalition’s event celebrating the 15th anniversary of Medicare’s Part D benefit. The IMF is an active member of MapRx, which is a coalition comprised of advocacy groups who work together on the common goal of protecting and improving Medicare Part D. In addition to our attendance at the summit, the International Myeloma Foundation had the opportunity to provide our views about how the Part D Benefit has specifically helped myeloma patients in a digital interactive display at the event.

The event celebrating Medicare Part D’s 15th Anniversary was held on September 19, 2018. The event was attended by many of the top patient advocates, officials charged with administering the program during the Bush, Obama, and Trump administrations, congressional staffers responsible for helping to drive forward the legislation, in addition to former President Bush who signed Medicare Part D into law.

“It was an honor for our organization to be represented at this event and see the different perspectives these experts have on Part D, its implementation, and how the program has evolved over time. We were happy to share how important strengthening the Medicare Part D benefit is to myeloma patients in this public setting and we are further energized to continue fighting for improvements to Part D,” Robin Levy Senior Director of Public Policy and Advocacy stated.

IMF will continue to work independently and collaboratively as members of the MapRx Coalition on issues related to Medicare Part D drug access. To view a recording of the panel conversations at the summit, please visit https://www.youtube.com/user/MapRxVideos.

 


Want to get involved?

Interested in learning more or taking actions about our federal and/or state priorities? Email the IMF Advocacy Team, advocacy@myeloma.org, to find out ways you can help and make your voice heard. Find us on the Twitter and Facebook! We will be sharing the latest news on legislation and policies we are tracking. And follow @Chemoparity for updates on our fight to get oral parity passed at the state and federal levels.

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