Monday, June 10, 2013

CANCER MISSION 2020 - Important Legislation Introduced!

Today is a very important day for all of us and our efforts with CANCER MISSION 2020.  Earlier this morning we held a Press Conference, here at the Camp Good Days’ Headquarters, with Congressman Tom Reed, to announce the re-introduction of the CANCER MISSION 2020 legislation.  H. R. 2301 – ‘Clinical Trial Cancer Mission 2020 Act’ was introduced in to the House of Representatives, sponsored by Congressman Reed and co-sponsored, thus far, by Congresswoman Louise Slaughter and Congressman Chris Collins. 


Joining Congressman Reed and I this morning were Monroe County Executive, Maggie Brooks; Monroe County Department of Public Health Director, Dr. Byron Kennedy; Monroe County Clerk, Cheryl Dinolfo; Rochester City Council Member, Elaine Spaull; Congresswoman Louise Slaughter’s District Director, Patty Larke; Thompson Health President & CEO, Michael Stapleton, and others.  I am so pleased that so many people took the time out of what are very busy schedules to attend the Press Conference and demonstrate their on-going support for this very important effort.


The CANCER MISSON 2020 legislation will strengthen cancer research reporting requirements to make research data more available and ensure taxpayer dollars are not being spent on duplicative studies. The lack of enforcement in reporting clinical trial results led Congressman Reed to draft and reintroduce legislation that makes it mandatory for researchers to publish all data from clinical studies, whether the results are positive or negative. The bill establishes a national clearinghouse, under the auspices of the National Institute of Health (NIH) and includes penalties for researchers who do not comply.


As Congressman Reed stated this morning, we want to make sure important clinical trial results are made available to all researchers so that we might improve care, increase the chances of finding a cure, and safeguard taxpayer dollars from funding redundant research.


Treating cancer costs the United States over $130 billion each year. This bill ensures taxpayer dollars are being spent effectively and efficiently, preventing duplicative or redundant research and withholding future government support from those who fail to report their research findings. Grantees who receive federal funds to conduct research must submit clinical trial outcomes within 30 days of their discovery or face possible ineligibility to apply for future funding.


The reintroduction of this legislation enables us to move to the second phase of CANCER MISSION 2020, with a call to action, urging citizens, and our leaders, that finding the answers to cancer needs to be a priority and on the front burner. This legislation will also bring us closer to creating a much-needed collaborative and coordinated effort in the fight against cancer, so that the left hand knows what the right hand is doing.



As I have shared in the past, CANCER MISSION 2020 is built upon three key components: INFORMATION – CALL TO ACTION – ACCOUNTABILITY and is based on a quote I saw many years ago at the Fred Hutchinson Bone Marrow Transplant Center in Seattle, “There is no limit to what we can accomplish, as long as it doesn’t matter who gets the credit.” 


To put things in perspective: the odds of tripping while texting are 1 in 10 – the odds of getting cancer in your lifetime are 1 in 2 men and 1 in 3 women.  11,000 Americans are dying from cancer every week – that is one American every single minute.  And to bring it even closer to home, cancer is the leading cause of death, here in Monroe County.


Since we started in December 2010, CANCER MISSION 2020 has made great progress and the website has had thousands of visitors from all over the world, including all 50 states and 95 foreign countries and thousands have signed the CANCER MISSION 2020 Petition, both through the website and during a number of Petition Drives that have been held throughout the Greater Rochester and Monroe County areas. 


We need everyone’s help and support as we move into this call to action phase and work to have the CANCER MISSION 2020 legislation signed into law.  Please take a few minutes to visit the website,, read H.R. 2301, and contact your representative, asking for their support of this important legislation.  And please share the website, legislation, and petition with your network of contacts, urging them to do the same.  It will only be through this grassroots work and the support from so many that we will be successful in our call to action and able to move on to the final phase – accountability!