You may recall my letter to the NCI of December 5th.  It is posted here.  Below you will find the response that I received today. 

I apologize for the delay.  This was quite a lot of information to gather.  However, thank you for all of the great questions.  I really appreciate that you’re trying to understand NCI and its processes.  I know there is a large amount of information out there.  I will do my best to help guide you through it.

One of the best places to see the complete funding process at the level of detail you describe below is at Everything You Wanted To Know About the NCI Grants Process, beginning on page 43 of the PDF file (Chapter 2 or page 27 in the hard copy).  The topic is very technical, and this reference book provides the correct sequence of events and terminology. 

The diagram on page 53 of the PDF file above describes NCI’s grant process.  The “NCI SRG” is where patient advocates are involved.  The National Cancer Advisory Board (NCAB) performs the second level of review after the SRG.  There are always public members on NCAB.  NCAB members are presidentially appointed for 6-year terms. 

Page 64 describes the evaluation criteria used for grants by the SRG.  For more details you may be interested in the implementation of the Inclusion of Children in Research Policy.

Continuing on pages 71-72 of the PDF file, the section titled “NCI Funding Determinations” is probably of most interest to you.  Program Directors are required to follow the rank order of applications that results from the peer review process.  This process is described in more detail on page 72.

A more concise overview of how the NCI budget is developed and executed can be found at

Advocacy groups are involved in this process many ways, throughout each fiscal year.  Many advocacy organizations have formal liaisons to the NCAB.  The NCI Director and other NCI leadership meet with advocacy organizations to discuss issues of mutual concern.  Patient advocates have participated in at least 742 NCI activities since 2001. 

The Office of Advocacy Relations is the primary point of contact for advocacy organizations at NCI.  We work with any individual (such as yourself) or organization (such as CureSearch).  We do not maintain a public list of these organizations, however, many national organizations that provide support to cancer patients and their families have applied to be listed on our website at    Full contact information is listed for each advocacy organization.

Executive Committee members are listed in the NCI Fact Book on page 24.  Links to all NCI Divisions, Offices, and Centers for Program Directors are found on NCI’s main website.  You can find contact information for any federal employee at NIH through the NIH Employee Directory

NCI does maintain a public database of funded grants.  Many fields are included in the database, including the grant abstract (research topic).  Grants that are not funded are confidential, and the property of the Principal Investigator who submitted the application.  The Principal Investigator may want to revise and resubmit the grant application or may want to use that idea in another application.  In fact, maintaining confidentiality of the peer review is mandated by law, and most peer review materials are shredded after the meeting. 

The NCI Fact Book discusses grants funded in rank order, versus grants funded as exceptions to this rank order, on page 11.  In FY07, 17% of grants were funded as exceptions to the established payline.  The NCI Fact Book is normally published in the spring of each year.  I recommend it as a source of information to answer a lot of your questions. 

Grant awards are not required to be published for a 30-day public comment period.

NCAB meetings are open to the public, except when they are closed to discuss proprietary issues.  Grant applications are proprietary information and confidential until they are funded.  Notice of all NCI advisory board meetings is provided to the public through the Federal Register and on publicly available websites. 

NCI’s funding policy for FY08 Research Project Grants is publicly available at

Here is a link to a peer-reviewed article that addresses some of the challenges and issues related to research funding and its relationship to disease statistics:

Hope you find this helpful.  We look forward to working with you in the future.

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I will just say, let's really try to understand what she's saying. I have to go back and read the questions. But I will say this. I don't care if God wrote the peer-reviewed article about how funding and treatments have no relationship......I still call BS.
i read redread, and read the pdf pages noted.
smells like politics to me.
but i had to read it twice, honestly. you may need to dumb this down for me.
but im thinking its the same old
GOOD JOB getting a response at all. how awesome that foots in the door. well sorta. can you even get a non elected foot in that door.
post script. its in black and white in the table that goes over cancer types and its funding. same old story
Well sh*t Bob, so much for keepin' it simple...
ever read Catch-22? It's just mis-direction......they disappear 95% this way.....are we 5%'ers???
Wow, this is DENSE information. I think we have our hands full synthesizing all of this but I really do think there are some priorities we can discern and set a course on. It's just going to take some time to dig in and figure out what the best course is. I would be interested to hear what others think the priorities for PAC2 should be. I'm thinking focusing on making sure that Pediatric Cancers/COG/CureSearch has advocates on every level of influence will be much more effective than trying to influence grant selection in a more direct way. Most of us are not scientists and we don't play them on tv. :) We need to let the scientists do their job but we have to make sure the right scientists are in the game for the kids. From what I know as a contractor in Health and Human Services, there are ways that Congress can give line designation to fund initiatives very specifically so that the agency has very little flexibility in how it is spent. I would think that would possibly be a good initiative and I'm sure CureSearch could guide us in how to do that exactly. I suspect it might be an expansion on the Carolyn Walker bill to get additional funding very specifically designated for pediatric cancers.

I know there is a lot of frustration but try to remember there are dedicated scientists who work for the betterment of the country, often at subpar pay for their field, at the other end of these agencies. They are making decisions at the crossroads of lots and lots of pressures, priorities and needs and given unlimited resources, they would do it all. I work in a different part of HHS and I know that there are good people doing good work and I think we have to be really careful not to alienate them. I can tell you that there is plenty of red-tape and you can be mummified in it or can be shepherded through it. There is finesse in this just as there is in all political arenas. Frankly, this request itself could have easily fallen into red-tape hell and they made a point not to do that.

I know I'm not going to get too far on digging into this before the holiday but hopefully when I have some time off around New Year's I can dig in a bit deeper. The abstract alone on the NEJM article is more than I can synthesize tonight!
Peggy et al;

this is definitely a complex set of answers. And I certainly agree with your point that this is not a reason to be frustrated or angry at the scientific community at large. They each do what they can with the resources available.

To me, this boils down to public health care policy debate about priorities. And, as you point out: How to best advocate for our views. Honestly, I think there is a fundamental disconnect in the entire process. As a country, as Americans, as parents; we have Child Protection acts, laws, services, policies, training and legislation, to name a few. We have safe school buses and lunches. We remove children from unsafe homes. Generally, we prioritize their health and well-being. Yet, when we view the links provided, we see a discrepancy. And a significant one.

So our challenge is to raise the question. To spread awareness of what we view as a burning question in priorities for childhood cancer research and funding.

Thanks Peggy,
I'm reading.....
The Consumer Advocates In Research and Related Activities (CARRA) program indicates about 1/4 of their current reps are representing pediatric cancers. Do we know if any of our members are also a CARRA member? I went ahead and subscribed to the weekly email where they will eventually announce the next round of membership selection. They are not currently accepting new members but this seems like a good goal. One or more CARRA members from PAC2.

Can someone that knows the list of specific pediatric cancers look at the list of cancers represented in the current CARRA membership and see if all the types are represented? If not, that would be an additional goal to get one from every type of pediatric cancer as members.
From a google search:
Dianne Traynor, Director of Research Funding Advocacy for the Pediatric Brain Tumor Foundation, has served as a CARRA member since 2001

Anyone have a connection with this org or person? I searched for her name but didn't find anything on PAC2.
Good grief, this is an abyss I've fallen into tonight. Must go to sleep BUT here's one more gem that I would like to see us review. This page lists a group of cancers they have done extensive evaluations of and created reports that make recommendations and identify the resources needed to bring those recommendations to fruition. Then for 3 diseases that I know have pediatric implications, they have done even further strategic planning. I would suggest that we find members who are willing to dig into the appropriate documents and try to discern if there are appropriate actions/focus areas w/in them.

Some of them are quite old so maybe it's time to push for another round of reviews. I don't think we'll know that until we look at them and see how much progress has been made on the recommendations.
You know what really pisses me off (excuse my french)? I agree that the funding could be appropriated differently but it is so FUNDAMENTALLY INADEQUATE from the get-go. $48 billion a year in cancer research seems so paltry when we drop $700B on bailouts and everything going on right now. $172M is completely, totally inadequate and we need to increase that substantially not by taking it away from other cancers that are also, in my opinion, inadequately funded. We need to get this country to put some money behind the things that actually matter, would save billions of dollars in health care in the long run and can make a real difference in quality of life long term for future generations.

You know the other thing I wonder is what are other developed nations doing for cancer research and pediatric cancer research?? We aren't the only deep pockets in the world.

The NIH guidlines for inclusion of children, reads like an OSHA or MESA regulation Much like those regulations, is also dated 1997. I know that those regulations usually recieve yearly admendments, so the ones for inclusion of children most likley have as well. I didnt see any newer dated amendments.
Bob, you also deal with OSHA regs, did you get the same opinion?


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