Advocacy Updates

Advocacy Update
May 2017


IMF Statement on House Passage of American Health Care Act

As you are likely aware, the American Healthcare Act narrowly passed the House of Representatives on May 4. The International Myeloma Foundation released a statement highlighting some of the concerns we have with how the bill could affect myeloma patients if it becomes law, which can be viewed, HERE.  Analysts believe this legislation will change substantially if it moves through the Senate and we will be actively monitoring it.

Take ACTION and tell Congress American Health Care Act doesn’t work for cancer patients

NIH Funding Update:

Republican and Democratic Congressional leaders reached a government funding compromise deal on Sunday, April 30th. We are happy to report this compromise includes $2 billion in new NIH funds, despite fears the agency would receive cuts. Specifically, the bill provides for an additional $476 million to the National Cancer Institute. These increased funds will greatly help Cancer Moonshot efforts.

While this increase is encouraging, it is important to note that this deal will only fund the government through September. When that time comes, we will have to fight for NIH funding for FY2018. We are pleased with this increase and hope Congressional leaders will continue to prioritize cancer research.

FDA Advocacy Day on The Hill – Alliance for a Stronger FDA

On Tuesday April 25th, more than 50 Alliance for a Stronger FDA members, including the IMF, participated in approximately 60 meetings with authorizers and appropriators. Our timing was near-perfect; Hill staff was back from recess, but not yet overwhelmed.

Recognition of the agency’s broad mission and growing responsibilities has never been higher.

Incredibly Important Mission: FDA’s mission (safe foods, safe and effective medical products) is a core function of government that benefits every American every day. State and local agencies do not (indeed, cannot) do what FDA does; nor can private organizations or individual consumers duplicate what the agency does.

Favorable Cost-Benefit: With FDA carrying out its core functions, the medical products and food industries overseen by the agency have become world leaders, job creators and contributors to a positive balance of trade. When there is a breakdown in FDA oversight: food and medical products that aren’t safe result in death, disability and severe economic losses. Without a level playing field and industry-wide standards and enforcement, incentives for discovery and innovation disappear.

Well-Trained FDA Staff is Indispensable: The public does not have the needed training or tools to assess whether cantaloupe is contaminated with listeria or a statin is reducing cholesterol. The essential services provided by FDA require science-based decision-making derived from specialized expertise and a well-trained, up-to-date staff. More than 80% of FDA’s budget supports employee costs, so the budget can’t be cut without compromising the staff needed to do the agency’s job.

The Alliance Hill Day was remarkably positive. As a group we increased understanding about the budget threat to FDA and why the public health and regulatory missions of the agency require continued high-level support through the appropriations process. Lots more work is going to be needed but the challenge to FDA is sufficiently great that we know Alliance members will come forward in ever increasing numbers to articulate support for FDA.

Legislative Updates:

Federal Efforts – Oral Parity

H.R. 1409, the federal oral parity bill known as the Cancer Drug Parity Act of 2017 has been going strong since its introduction by Rep. Leonard Lance (R-NJ-7) in March of this year. Currently, the bill has 56 bi-partisan co-sponsors; 26 republicans and 25 democrats. Previous versions of the bill moved more slowly in gathering support. The 2015 version had far fewer co-sponsors at this point in its existence and still ended its lifecycle with a respectable 123 supporters. The IMF Advocacy team believes the 2017 bill owes its early success to education efforts over the previous year by members of the myeloma community as well as minor language changes to the bill that make it clear that parity is not an insurance mandate.

As we continue to push for more support, the IMF Advocacy team invites you to contact your Representatives in Washington and ask them to co-sponsor H.R. 1409. Take action, HERE to learn how you can make a difference with this important piece of legislation.

Please visit the PEAC website if you are interested in reading fact sheets or more information about oral anti-cancer parity: (

State Efforts -Oral Parity

Tennessee-  The Senate bill has been rolled to the 2018 calendar, our House bill champion Rep. Lamberth will not be moving the house bill to the floor.  Procedurally, a bill cannot effectively move to the Governor’s desk without both House and Senate bills moving through each chamber. We are pivoting to prepare a 2018 campaign.  This puts us in position to carefully review the incredible momentum we grew during this campaign, and specific supporters, champions, and potential supporters for a 2018 campaign.

North Carolina-  Our coalition efforts for HB206 hit the target supporters we needed to bolster support on our bill on the House floor to secure our 90-22 win. This is a huge indication of our organized and targeted strategy in the works, producing a successful outcome.  Our next challenge is unchartered territory: the Senate.

State Efforts -Implementation/ Oral Parity Fix Bill

Minnesota - The oral chemotherapy fix language (SF1627/HF1832) currently moving through the Minnesota legislature, was heard on the Senate floor on April 27th, and passed unanimously by a vote of 64-0. The coalition sent out an alert and had 61 letters sent to senators in support of the bill. The language was also amended onto the Senate HHS omnibus bill, and is on general orders in the House, but not on the House calendar for the foreseeable future.  We are hopeful that having it in a couple of places will increase the chances that it will get signed this year.

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