#MoreThan4 NCI Email Exchange

EmailExchange_edited-1The National Cancer Institute recently sent a response to an email sent to them containing a selfie and a #MoreThan4 flyer. You may have received one. Below is the NCI email and our response.

Thank you for taking the time to reach out to us. We know far too many children suffer from cancer and we are fighting this terrible disease alongside you.

We also recognize that children are not just small adults and children with cancer need new approaches and tailored treatments that allow them to live long and healthy lives. In addition to our efforts to understand this disease so that we may better prevent and treat all cancers, NCI has a number of research initiatives specifically for childhood cancer. To learn more, please visit http://www.cancer.gov/researchandfunding/areas/childhood and follow us on Twitter.

Thank you again for your passion and commitment. We never lose sight of the patients we serve and your picture is a powerful reminder that there is still much work to be done.

Kelley Landynci-logo-english.gif
Director
Office of Advocacy Relations
National Cancer Institute
31 Center Drive, Suite 10A28
Bethesda, MD 20892
(301) 594-3194 | NCIadvocacy@nih.gov

Dear Ms. Landy,

Thank you for your response to our email where we expressed our displeasure with the NCI only devoting 4% to childhood cancer research.

First, we want to let you know that we are very appreciative of all of the efforts made daily of the hardworking men and women of the National Cancer Institute in the fight against all cancers.

Regarding childhood cancer:

We applaud the developments that are being generated under the TARGET program.

We support, and very much appreciate the great work that the Children’s Oncology Group does and we look forward to the benefits to be gained from the Pediatric MATCH program.

With nearly half of a million-childhood cancer survivors alive, and most suffering from late affects of their treatments, our community surely welcomes and supports the Childhood Cancer Survivor Study (CCSS).

Immunotherapy work that you are doing offers tremendous opportunities for our children! We are extremely excited and fully support this area. We appreciate the hard work your researchers are doing to get effective results as quickly as possible.

We want to see all the above programs operate at FULL potential. For years, childhood cancer has been the unintentional victim of budgets developed using such factors as best scientific merit, potential impact, and likelihood of success. What we are saying is this: With all the potential that has been unlocked in genomics, and the vast area of knowledge that has been obtained in the last few years, you are not applying enough financial resources to the above areas that will hasten impactful successes that will generate major increases in life years for children affected by cancer.

In short, we have not been satisfied with the 4% in the past several years when NCI used the same budget methodology as outlined above. We are not going to be satisfied in the future unless NCI either changes its priorities, or changes the way they determine how to finance their “best science.” Once that is done, we are certain that the result will be more than the 4% we have seen in the past.

4%20X30Sign_edited-1We look forward to the day we see change.  We look forward to real progress. We also look forward to a day where the increasing number of survivors will not have to fear living only to 35 or 40 years of age, but can look forward to living a full life rather than an abbreviated one because we did not invest properly in the opportunities that have been uncovered in the last few years since we mapped the human genome.

We respectfully remain unsatisfied,

#MoreThan4

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This entry was posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized and tagged , , , , , , , , . Bookmark the permalink.

4 Responses to #MoreThan4 NCI Email Exchange

  1. Linda versone says:

    I basically said the same thing in my response-promising research is great, but research for children needs more MONEY!

  2. Trisa Gordon says:

    The Gordon family supports 4% is not enough,our son has AML it been so hard. He has a major infection right now and is in the ICU 😥

  3. jacksangels1 says:

    I got the same email of course.

  4. Pingback: Moving the Needle | Four-Square Clobbers Cancer

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