Remember the Caroline Pryce Walker Childhood Cancer Act?
Seems like it’s been a long time since it was passed as Public Law in 2008, authorizing appropriations of up to $30 million per year for childhood cancer research.
The first funding appeared in 2010. As John Lehr of CureSearch said in his interview with PAC2, in 2010 the Act was funded as follows: $3 million was appropriated to help establish a national childhood cancer registry and $1 million was appropriated for informational services to patients and families. And for the future? This year's attendees to Advocacy Days did not even ask Congress to fund it.
We have all wondered why this Act, which had 100% bipartisan support, would NOT be fully funded. Interestingly enough, so did the House of Representatives Appropriations Committee, who said this to National Cancer Institute (NCI) in the FY 2010 House of Representatives Report 111-220 (Page 109):
"Pediatric Cancer -- The Committee urges NCI to intensify pediatric cancer research, including laboratory research, to identify and evaluate potential therapies, preclinical testing, and clinical trials through cooperative clinical trials groups. This research should include research on the causes, prevention, diagnosis, treatment, and late effects of pediatric cancer. The Committee also requests that NCI report to the Committees on Appropriations of the House of Representatives and the Senate by June 1, 2010 on the actions it has taken to implement the research-specific portions of the Caroline Pryce Walker Conquer Childhood Cancer Act."
The NCI’s response to the Appropriations committee questions was published July 19, 2010 and, in my view, was quite underwhelming. Click here to download the full report: "NCI's Pediatric Cancer Research and Pediatric Cancer-Related Activities".
This is the Executive Summary:
"In the fiscal year (FY) 2010 House of Representatives Report 111-220 (page 109), the Committee requested that the National Cancer Institute (NCl) intensify pediatric cancer research and provide a report on the actions it has taken to implement the research-specific portions of the Carol inc Pryce Walker Conquer Childhood Cancer Act. The following is submitted in response to those congressional requests.
The Caroline Pryce Walker Conquer Childhood Cancer Act (CPWCCCA) authorized $30 million dollars per year for five years across HHS for a variety of purposes described in the law, including expansion of the National Childhood Cancer Registry, development of a public awareness initiative, and an intensification of cancer research efforts.
The FY 2010 Congressional appropriation for HHS specifically provided $3 million to the Centers for Disease Control and Prevention to enhance and expand its existing cancer registry, and $1 million to HHS to develop informational services for patients and families affected by childhood cancer. In March 2010, the Department provided this $1 million to NCI for expenditure through an intradepartmental delegation of authority. To invest these funds in keeping with the requirements and spirit of the CPWCCCA, on June 4, 2010, the NCI announced an opportunity for current grantees to compete for administrative supplements that would enable successful applicants to expand and implement activities focused on increasing awareness of pediatric cancers, including current state-of-the-art treatments for these diseases and clinical trials of new interventions, and/or on improving the long-term care and quality-of-life of pediatric cancer survivors and their families. Successful applicants are required to utilize a current partnership or establish a new partnership with one or more organizations who provide support and services in areas of childhood cancer and to individuals and families affected by those cancers, and who must be involved integrally in the development, review, and/or dissemination planning for the informational materials and resources. Priority in funding will be given to applications that address the needs of low income and ethnically diverse populations with regard to childhood cancers and persons affected by those cancers. NCI anticipates awarding four to seven administrative supplements in response to this initiative.
In the consolidated Appropriations Act Conference Report 111-366, the conferees commend NCI for its attention to the issues of pediatric cancers. The NCI continues to expand and intensify its robust pediatric cancer research program.
In 2008, NCI provided $189.7 million for pediatric cancer research. In 2009, NCI funded this research at $192.5 million within the annual appropriation and an additional $49 million from NCI's American Recovery and Reinvestment Act (ARRA) allotment. NCI estimates that its pediatric cancer research funding will reach $196 million in FY 20I0. NCl uses this funding to support an ambitious research program designed to help children with cancer by bringing the Institute's most promising new technologies and ideas into our efforts to develop effective therapies and other interventions. NCI's strategy encompasses a broad spectrum of pediatric cancer research. It begins with basic biology research and preclinical testing to identify and validate new therapeutic targets, and extends through our comprehensive clinical trials program that translates discoveries into clinical benefit for children with cancer. An important feature of our research program is our work addressing the special issues faced by childhood cancer survivors."
These are the conclusions:
"NCI funding supports a large portfolio, which includes studies to understand the biology of; identify causes of, and discover effective treatments for childhood cancers. NCl-supported studies are developing new treatment approaches that target critical cellular processes required for cancer cell growth and survival. Preclinical studies of new agents are identifying promising anticancer drugs that can be evaluated in clinical trials and clinical trials are identifying superior treatments for childhood cancers, thereby leading to improved survival rates for children with cancer. The portfolio also encompasses projects designed to evaluate new drugs that may be more effective against childhood cancers, have less toxicity for children, improve the health status of survivors of childhood cancers, and monitor U.S. and international trends in incidence and mortality rates for childhood cancers.
More than 10 million cancer survivors are alive in the United States, at least 270,000 of whom were originally diagnosed when they were under the age 21. Although there has been some increase in the incidence of all forms of invasive pediatric cancer over the past 20 years, from 11.5 cases per 100,000 children in 1975 to 14.8 per 100,000 children in 2004, death rates have declined dramatically and five-year survival rates have increased for most childhood cancers during this same time. Advances in cancer treatment have meant that today almost 80 percent of children diagnosed with cancer are alive at least five years after diagnosis, compared to about 58 percent in the 1970s. This improvement in survival rates is due to significant advances in treatment, resulting in a cure or long-term remission for a substantial proportion of children with cancer."
Let's examine this statement from the Executive Summary:
"In the consolidated Appropriations Act Conference Report 111-366, the conferees commend NCI for its attention to the issues of pediatric cancers. The NCI continues to expand and intensify its robust pediatric cancer research program."
Here is the quote from the Report 111-366:
"The National Cancer Institute (NCI) reports that it is meeting the funding level identified for pediatric cancer research in the Caroline Pryce Walker Conquer Childhood Cancer Act of 2008 within its base budget. The conferees commend NCI for its attention to this issue."
So, while the funding numbers don't add up to what we hope for, what our kids deserve, it seems that there is a more fundamental issue. While I have the greatest respect for the work done with the NCI funding; NCI, in response to a direct statement from Congress saying "intensify pediatric cancer research" and a direct question from Congress asking for a report "on the actions it has taken to implement the research-specific portions of the Caroline Pryce Walker Conquer Childhood Cancer Act" essentially says..."we've got it covered" and are commended by Congress.
I respectfully disagree. Until no child dies from cancer and the cure does not cause significant long-term health effects in survivors -- we do not have it covered.
PS: At the very least the NCI should NOT downplay statements like "Although there has been some increase in the incidence of all forms of invasive pediatric cancer over the past 20 years, from 11.5 cases per 100,000 children in 1975 to 14.8 per 100,000 children in 2004". According to data from the Annual Report to the Nation on the Status of Cancer, 1975–2007, published in the Journal of the NCI in March 2011 the incidence rate in 2007 was 17.1 cases per 100,000 children. That represents a 49% increase in incidence rate from 1975 to 2007. The data also reports that in 2007 there were 14,119 cases of childhood cancer. I know and love one of them. 2007 sucked.
I couldn't agree more that it is NOT covered. It appears to be extremely sugar coated....
more money is needed for more research, and 1 in 5 children will still pass away from cancer.
While I don't want to be too hard on CureSearch on this issue, since I haven't spoken to John Lehr on this yet, I would say, as the Chair of CureSearch when the CWPCCCA was passed, not continuing to press and even embarrass both the NIH/NCI and our Congressional Representatives on the lack of focus on 1) the funds spent on Childhood Cancer versus Adult Cancers in total, and 2) the failure to fully fund the system of COG translational trials, with (2) being the best return on dollars invested since man has started to tackle curing cancer of any form, is not acceptable. This Act passed unanimously in both Houses of Congress. There is no way that a 28.7% increase (by my calculation) over any time period is acceptable, and the funding should be there to determine the cause, but most importantly, the COG has shown that their (they, not the NCI runs these trials!) trials are the most effective process to improve cure rates, and have consistantly done so in comparison to nearly any adult cancer. The fastest way to get new trials and new cures to patients is in these COG trials, and never, never since the COG was formed by consolidation, has the COG gotten the funding they are prepared to use without major infrastructure increases. Trials are left unpopulated by kids who could be cured every single day.
Despite the lack of any discussion on the CPWCCCA on the materials given to the attendees/advocates on the subject, I spoke to every one of the Kentucky delagation I saw about my disgust and dissappointment that they have dropped the ball, that if Federal Government proves to me that on such basic, universally backed medical issues, with such a pitifully small amount of money requested, they can't do the right thing, it is obvious to me that Government is broken, and the Libertarians are right. Stop taxing me so I can do the right thing, since you won't.
Since the realization, finally, during my visit to one of the CureSearch Walks, which had only been heretofore tolerated by the CS Board, and my report to them that this is an amazing and wonderful event that should be replicated in every city with a COG hospital, so long as the hospital will approve and back it, CureSearch has backed these Walks. Since Mr. Lehr comes from a background of fundraising as opposed to waiting on the Federal Government to do the right thing, I suspect his focus is on the success he knows he can achieve, based on the Walks. That having been said, allowing the Congress and NCI to get off like they are doing the right thing and all they can is sickening to me. Why do we pay any taxes if they can't get this, the most basic of things right. It would be only slightly more acceptable if there were any profit incentive available to private enterprise to find cures, but there isn't.
Let me be the first to grow back my hair so I can shave it off in a St. Baldrick's style Cutting of Shame on the Steps of NCI's Headquarters. Let me know the date, and I'll make the application for federal permission the protest.
Tom Dunbar, former Chair, NCCF/CureSearch