I was fortunate enough to be on a conference call with an NCI Director of Advocacy Relations yesterday. My primary goal was to determine the best method for PAC2 to advocate for increased funding for childhood cancer. Secondly, to determine "how the system works", in other words; the who's, what's and how's of how NCI allocates funding for specific cancer research areas. Ah if it were only that simple.....

The call was approximately an hour long, and I believe the NCI attempted to be helpful. However, I still am unconvinced of the information I got, and have sent a follow up letter, posted below. Essentially, in response to my allocation process question, the NCI claimed that grants are awarded based on being the "best science". Period. REGARDLESS of cancer type, mortality for that cancer type, incidence of that cancer type, person-life-years-lost for that cancer type. They also are unable to adjust awards or account for the fact that there may be a high level of research ongoing on similar cancer types outside of the NCI grant process. I asked that question a few different ways and got the same answer.

As far as advocacy, I do have some info there and will work that relationship for us and pass on. All in all, an interesting and frustrating call. But one we will not let lie....(did I say lie as in rest or...?). Here is the follow up letter I sent earlier today.


thank you so much for your time and patience today. I wanted to ensure that my understanding of the funding process is consistent with what you described. I also have a couple additional follow up questions.

Grant Funding Process Description


1. Initial Grant Selection
a. Internal NCI Grant Review Teams review all grant applications
b. The selection criterion is "good science"
c. Criteria such as type of cancer, incidence, mortality/5 or 10 year survival rates, or person-lost-life-years are not considered
d. NCI is unable to quantitatively or qualitatively account for funding to research into similar projects or cancer types outside NCI

2. Program Director Review
a. Completed by a Program Director
b. Goal is to identify research "gaps" and eliminate redundancy
c. Identified gaps are then reviewed in a workshop, then to an Executive Committee who makes recommendations to an External Board
d. Approved gaps are filled with additional funding

3. Peer Review Boards/Advocacy Groups
a. The primary means for the public to advocate is to assist existing Peer Review Boards/Advocacy Groups
b. Additional or alternative advocacy efforts for the general public exist, but may require expertise


Follow-up Questions


1. At what stage(s) in the funding process do the Advocacy groups become involved? Can you briefly describe the Advocacy efforts?
2. Can you provide a complete list of all the Advocacy Groups and contact information?
3. Can you provide further information on the Grant Reviewers, Program Directors and Executive Committee members (i.e. - names, resumes, past and current affiliations)
4. Is there a database showing approved/rejected grants and research topics?
5. What percentage of funds are distributed in the initial grants vs. grants to fill gaps?
6. Are grant awards required to be published in the Federal Register for a 30-day public comment period?
7. Are public meetings held to discuss the grant awards?
8. Is there a written policy or guidance document that describes the NCI funding process?
9. Is there a written policy or guidance document that describes a "gap" as was discussed today?
10. Can you provide a reference for your general statement "research dollars do not directly correlate to increased survivorship"?
11. Should any questions require a FOIA, please provide as much detailed information as possible to assist in the request.

Thanks again for your time, and I look forward to your response.

I had other things I wanted to say, but the brains of this operation came to the rescue, and convinced me to start the dialogue and build up to the tougher questions. This is a portion of what I withheld. Discussion Again, forgive my ignorance, and I recognize that you provided a “watered down” version, but I am still struggling with the simple explanation. It would seem that; 1. There is no basis of design for the grant selection program. 2. The basis of design can only be completed after an evaluation of the problem during a problem formulation stage.
3. The problem formulation stage would evaluate real world data such as mortality rates, incidence, level of existing research, person-years-life-lost, etc.
4. Once the problem is defined, an NCI-wide strategy for selection of grants would be developed, focusing on the prioritized problems. (Recognizing that potentially some problem areas may “come up short” due to lack of quality grant applications.)
5. Then, and only then, is there a scientific basis to address the prioritized problems, allocate funding to address the problems and begin the review of grants and select the “best science” to address the prioritized problems.
6. A final step would involve a monitoring program to determine the success/failure of the funds allocated in addressing the problems.
7. Without this basis of design, problem formulation and, ultimately, the development of metrics to measure success, how can the NCI, through an essentially “random” funding process based on “best science” only, possibly hope to achieve its goal of a “Nation free from the suffering and death due to cancer”?

I specifically asked and you specifically claimed that real world data (e.g. cancer type, mortality, incidence, etc) is NOT a criteria in the Funding Process. My question is how can the data which defines the problem NOT be used or considered irrelevant?

But perhaps I asked the wrong question. Perhaps when you say the data is not used in the funding process, the grants being reviewed are already focused on addressing a particular “problem” as already identified by NCI. In that scenario, if grants being reviewed were focused on being the “best science” to address a particular “problem”, I can see how the “data” would not need to be considered in the grant review process. Perhaps I should ask how the “problem categories” are selected and funded? Or perhaps I just misunderstood your explanation.

If none of these apply, surely you see the reason for my incredulity?

I know, I know, we are not even close to yelling for more childhood cancer funding. Still at the bottom of the mountain. But we have to understand the process, and, unfortunately, work within the process. As soon as it makes sense to flood someone with letters, or advocate, you will know..... PAC2 comments, thoughts, suggestions are welcome.......

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you are doing this the way it NEEDS to be done. you rock.

so basically science is blind and kids just HAPPEN to get screwed. ugh.

gotta build the foundation though. excellent start.
As Dari said, an excellent start! Your questions were great. The frustration is deep, I know. The best part is that you actually had a conversation with those that matter, hopefully it can be built upon and we'll make real progress. I am trying to get some true contacts and an in to the lobbying arena. Personally, Bob, I feel that I must get myself down to D.C. and get in front of whomever I can, myself. I'll keep you posted on any progress I make.
PEACE.
and Thank you always for your incredible work!
Dennis
This is a good start! Without you, Lori and the many others talking to the people who decide what "best science" means I would be lost on the path somewhere in the woods complaining about breast cancer awareness- I would not be able to see the "mountain". "Best science" needs to be built on unity that is what PAC2 is all about. The NCI cannot ignore us forever ....the times are a-changing! I await your call to action.

Jenni
I applaud you!!!!

Would it be a shot if we contacted the doctors, (when you say to), who have and are currently treating our children and ask them for some incite and possible ways to approach the "system" (ex. NCI). Most of the hospitals our children use are research based hospitals and the doctors have to submit their research grant ideas to those giving the grant money.

If we had the same standard letter then we would all be addressing the same questions to each hospital. I realize that the doctors are busy fighting for our kids, but if they understood we are trying to fight for the funding they may not have time to fight for they might be more apt to answer our questions.

Just a thought.
Karen Vannatter, Angel Emma's mom
Wow, this is significant. I'll look forward to when you hear a response. I wonder if there is a way to identify both grantees that DID receive funds for Childhood Cancer and those that applied that did not. I would think that there would be value in understanding what did and didn't work but of course I have no idea how to figure out what grants are which. Seems like something you could certainly get from NCI either easily or via a FOIA request.

I can understand how the individual grant might not correlate directly to survivorship stats (because some of the science is pretty far from the bedside and needs to be done) but I don't quite understand how they cannot be deliberately addressing the full spectrum of cancer types.
I agree on what the did and didn't grant, I asked if there was a database. And I also understand the need for basic research, but to me, if your mission is to create a “Nation free from the suffering and death due to cancer”, you have to allocate some to basic research and then some to the actual issues you are attempting to fix.

Each application has to have a focus or they would not be able to characterize them as they do here

http://www.cancer.gov/cancertopics/factsheet/NCI/research-funding and more completely other places i cant find right now.....

SOMEBODY tracks that......and not after the fact.....And THAT's what we need to find.....who the advocates are, who they are affiliated with, what their past affiliations were....I have a call tomorrow AM with the childhood cancer guy they mentioned....we'll see....
Have you seen this part of the website that lets you search for grants?
http://deais.nci.nih.gov/Query/

Peg
yeah....have you tried to use it lol
LOL, I ran a couple of searches last night but I agree, not exactly sure what we would do with it. Would be nice if there was some sort of export functionality. There's probably a way to get the data that's behind it but we'd have to figure out what questions we want to ask.
Here is their '06 Fact Book in .pdf. The item I was interested in were the Specialized Programs of Research Excellence (SPORE) discussed on page E-6 (page 63 of the document). This seems to be a program where they strive to wed basic science and bedside science as well as developing scientific talent for the future. I see a general leukemia one and a lymphoma one but nothing specifically pediatric. Maybe this is our target...ask that NIC establish a SPORE for pediatric cancers or I imagine, even better, would be one for each of the types of pediatric cancers but that might be me dreaming again. This chart once again shows the large $'s going to breast and prostate cancers. I wonder if in your conversations Bob you can start to discern how a SPORE gets established.
Attachments:
Check out this private/public partnership between Avon and NCI for breast cancer (I'm sure using funds from the Avon walks that I've participated in). Wouldn't it be awesome if CureSearch or one of the other fundraising orgs could partner in some way like this?

http://spores.nci.nih.gov/public/2006%20Avon%20NCI%20Brochure.pdf
One other tidbit out of the '06 factbook and I promise I'll quit. :)

Stamp Out Breast Cancer
The Stamp Out Breast Cancer Act (PL 105-41) was established in August 1997 and extended in July 2000 (PL106-253) and again in November 2005 (PL 109-100). This act allows postal customers to contribute to funding for breast cancer research through their voluntary purchases of special rate postage stamps from the U.S. Postal Service. The Act required the USPS to transfer 70% to NIH and 30% to the DOD of the funds collected
above the postage costs and administrative costs. As of November 2006, NCI has received $36,665,602. NCI has used these funds for research projects directed towards breast cancer research. Thus far, three major programs have been funded -- the "Insight Awards to Stamp Out Breast Cancer," the "Breast Cancer Research Stamp Exception Program," and the "Breast Cancer Premalignancy Program." In FY 2006, $6.896 million wasobligated on Breast Cancer Stamp Fund programs.

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