Prior to Fathers Day 2007, I had not given much thought to how funding for cancer research worked. That all changed. We thought we would share some thoughts and observations based on my own experiences and our research. This only seeks to inform, raise questions and to provide a platform for discussion. Nowhere in here will we suggest what charity you should support. But, without the right amount of funds directed towards the right research, PAC2 will only continue to grow, and we really want to shut it down. Let's just look at a few of the groups competing for your money.
When a child is treated at a hospital, the hospital incurs costs and produces a bill for the treatment. The bill covers labor, drugs, supplies, new equipment, other operating costs and, if it has a facility, some may be directed to research. Obviously not all hospitals have research labs, and the size and funding varies.
Many if not all hospitals have a fundraising arm. If you are at a facility that treats both adults and children, generally the funds it collects support operating costs, additions the hospital may desire, and some may go towards research. Research may be into treatment of any disease you can imagine. Some may go towards cancer research, both adult and childhood cancers. So, if you give to XXX Hospital, your money is directed towards many various causes, with an unknown portion related to childhood cancer research.
With hospitals, it would seem you need to ask if you can direct your donation to the cause you want to support.
Obviously, St. Jude is likely the hospital the majority of the public thinks of if and when they think of childhood cancer. Their marketing campaign is hugely successful. The post "What if...." has the actual data on St. Jude. In summary:
The American Cancer Society
The mission statement of the American Cancer Society (ACS) reads: "Founded in 1913, the American Cancer Society (ACS) is the nationwide community-based voluntary health organization dedicated to eliminating cancer as a major health problem by preventing cancer, saving lives, and diminishing suffering from cancer, through research, education, advocacy, and service. With more than two million volunteers nationwide, the American Cancer Society is one of the oldest and largest voluntary health agencies in the United States. Headquartered in Atlanta, Georgia, the ACS has state divisions and more than 3,400 local offices."
Many chose to become involved with the ACS fundraising events, including the "Relay for Life". The funds collected by the ACS are used for many causes. The numbers, in millions:
Childhood Cancer Research - $12
Other Research - $136
Prevention - $149
Detection/Treatment - $112
Patient Support - $271
Management - $68
Fundraising - $202
Looks black and white to us. The numbers speak for themselves with regard to the funding for childhood cancer, but just to be clear, 1% of funds are directed towards research to cure the entire suite of childhood cancers. That's actually up from about half-a-penny last year.
Imagine you participate in a Relay-For-Life. You raise $1,000. $280 (28%) goes to admin and fundraising costs. Only $10 of that $1000 you raised is targeted towards childhood cancer.
Overall, Charity Navigator gives ACS 3 of 4 stars but only 1 of 4 stars for efficiency. John Seffrin, Chief Executive Officer earns $685,884 or 0.06% of expenses. Program expenses (what it spends on the programs and services it exists to deliver) are 72%, management 6% and fundraising expenses 22%. Total revenue in 2010 was $956,159. up about $60 million from 2009.
#1 - Are there ways to "direct" the money raised toward your cause? The ACS site provides the following options for "Donation Designation"; cancer research, breast cancer research, prostate cancer research, colorectal cancer research and lung cancer research. But is there a manner to direct your funds towards childhood cancer if your amount raised is significant?
#2 - Why, when 1% of the funds are directed at childhood cancer, do we see so many childhood cancer victims in the ACS literature?
(We know we'll hear the "well research into adult cancers can benefit children" argument. Well, most adult cancers do not occur in children. And simple downsizing of adult doses is where we are at now, and the long term consequences have been demonstrated time and again and again and again to be simply unacceptable. We need targeted childhood cancer research!)
The Leukemia and Lymphoma Society
From its website: "The Leukemia & Lymphoma Society (LLS) is the world's largest voluntary health organization dedicated to funding blood cancer research, education and patient services. The mission of LLS is to cure leukemia, lymphoma, Hodgkin's disease and myeloma, and improve the quality of life of patients and their families. Since its founding in 1949, LLS has invested more than $600 million for research specifically targeting blood cancers."
We're sure many of you have had excellent experiences with the LLS. Many chose to become involved with the LLS fundraising events, including the "Light the Night" and "Team in Training". The funds collected by the LLS are used for many causes. The chart shows the various things supported (Year End 2009 data). The LLS has stated that almost $6 million of its $288 million in total public support is directed to childhood cancer. That equals $0.02 for every dollar of public support. The numbers, in millions:
So, you raise $1000 for LLS: $240 goes to LLS fundraising, general and management costs. $21 is directed to childhood cancer.
Overall, Charity Navigator gives LLS 3 of 4 stars, and for fundraising efficiency, 2 of 4 stars. John Walter, the President, CEO earns $482,000 or 0.18% of expenses. Program expenses are 75%, admin 8% and fundraising expenses 18%. Total revenue 2009 was $277 million.
#1 - Are there ways to "direct" the money raised toward your cause? I believe that national Light the Night teams raising over $100k may direct the funding? Anyone with experience?
#2 - As it is not readily apparent, has anyone seen the percentage of funds directed towards pediatric blood cancer research?
UPDATE - JULY 2009 - Here is a link to some information directly from LLS. Judge for yourself.
UPDATE - APRIL 2010 - We're a little disturbed by LLS's latest idea for fundraiser events. They've embarked on a Totally Baldacious campaign, where participants shave their heads. I know I've heard that one before....oh that's right, St Baldricks has been doing that for many years solely in support of CHILDHOOD cancer research! Shame on you LLS...
UPDATE - AUGUST 2010 - from the LLS:
"LLS recently launched a research initiative focused on the long-term and late effects of today's curative therapies - many of these quality-of-life limiting consequences impact pediatric patients differentially as children can live for decades after they are cured. LLS just committed more than $2 million to new projects in this research area, thanks to generous donors, and anticipate investing more than $5 million over the next 3 years, in order to make today's cures safer.
We are also involved in the Alliance for Childhood Cancer - http://www.allianceforchildhoodcancer.org/acc/Main and the Pediatric Cancer Survivorship Legislation - http://www.capitolconnect.com/lls/contentpage.aspx?page=pediatricsurvivorship"
We thank LLS for it's involvement!
National Cancer Institute
The National Cancer Institute (NCI) is part of the National Institutes of Health (NIH), which is one of 11 agencies that compose the Department of Health and Human Services (HHS). The NCI, established under the National Cancer Institute Act of 1937, is the Federal Government's principal agency for cancer research and training.
Here is the NCI total funding and the amount directed to childhood cancer over the past five years, it averages $176 million/year and ranges between 3.6 and 4% of NCI's budget. Over that same period, average NCI breast cancer funding was 24%, prostate 5% and lung 5%. During 2009 NCI did direct an additional $49 million in ARRA funds to support TARGET Research.
A portion of that NCI funding goes to the Children's Oncology Group. Dr. Peter Adamson discuss the new COG Foundation and funding arrangements here: An Important Message from Dr. Peter Adamson - Chair, Children's Onc...
Why is Federal funding for breast cancer five times the dollars per person life year lost when compared to childhood cancer funding? Why is Federal funding for prostate cancer, with a 99% five-year survival rate, nearly five times the total amount given to all types of childhood cancer? Why?
We challenge the entire paradigm of the NCI funding for cancer research. Have you ever known scientists who could manage? Think of cancer as a sinking ship, with all of us on-board. Who do we care for first? We get the women and children to safety. And we know many grieving Mom’s who would give up their seat to any child. But what we have is first class seating, funding, for adults.
Further discussion of NCI funding is provided in a review of the NCI's Pediatric Cancer Research and Pediatric Cancer-Related Activi... and the post NCI Funding: more lies, damn lies and statistics.
Susan G Komen
Just for comparison....Susan G. Komen for the Cure, formerly known as Susan G. Komen Breast Cancer Foundation, was established in 1982 by Nancy G. Brinker. Nancy promised her dying sister Susan that she would do everything in her power to end breast cancer forever. Today, Komen for the Cure is the world's largest grassroots network of breast cancer survivors and activists fighting to save lives, empower people, ensure quality care for all and energize science to find the cures. Thanks to events like the Komen Race for the Cure, they have invested nearly $1 billion to fulfill our promise, becoming the largest source of nonprofit funds dedicated to the fight against breast cancer in the world.
Overall, Charity Navigator gives SGK 4 of 4 stars, same as last year. For fundraising efficiency, SGK receives 4 of 4 stars, same as last year. Hala G. Moddelmog, COO, earns $532,000 or 0.18% of expenses. Program expenses are 83%, admin 11% and fundraising expenses 7%. Total revenue last year was $299 million. Course...that's before they started suing....
So you see that not all cancer charities support childhood cancer research. You see that the NCI funding is lacking. We know that industry supported research into childhood cancers is relatively non-existent because they don't represent a market force. Who should you support if you want to focus on childhood cancers?
PAC2 has assembled a list of wonderful childhood cancer fundraising organizations here. Others can be found on the Coalition Against Childhood Cancer (CAC2) website (a collaborative project of many national and local childhood cancer groups). Please consider St. Baldrick's, Alex's Lemonade Stands, CureSearch, The Rally Foundation for Childhood Cancer Research, Cookies for Kids Cancer, Bear Necessities, B+ Foundation and others listed on CAC2. These guys direct money only to childhood cancer related causes, primarily research or patient/family support.
Awareness --> Funding --> Research --> CURE! Speaking from the heart, over the past 5 years, PAC2 has come to know, respect and believe in the great people in these organizations. We believe that they will find a cure. And we know they will work with you in virtually any capacity and are ALWAYS looking for leaders and volunteers. They will work with you directly to meet your needs. The best part is that the VAST majority (typically 80 - 90%) of any money you raise for them is directed towards cutting-edge research into childhood cancer or patient & family support. Period.
Other diseases, local police, the United Way, March of Dimes, Red Cross, Save the Whales, World Wildlife Foundation, the nature of charitable funding is that it is a business. There are over 900,000 registered with the IRS. It must be a pretty competitive business eh?
So we as consumers should know where our donations are going. And expect accountability. Transparency. Just like this note is attempting to be. If we're wrong somewhere....please let us know.
In the end, it's your call. Decide if you want $10 (ACS) or $21 (LLS) or, typically $800 (CC orgs on our list) of the $1000 you raise to go to childhood cancer research.
Research is the key to a cure.
Big Disclaimer – our thoughts, experiences and analysis of their financial data. We just wanted to inform and show the differences, raise a few questions for the community, and to say things that we think need to be said. We are NOT saying ACS or LLS is not right, they just aren’t focused on childhood cancer.
I am so thankful for the information in this post/article and have been sharing it on a regular basis on the facebook page for our upcoming St Baldrick's event or during the radio interviews that I have been doing. I am still angered by the advertisements or recruitment for children to be part of the Relay for Life and/or Light the Night walk to get more donations when the money is not going to the same children that they are using. I am not saying that I do not support these events but my mother was a breast cancer statistic and I am married to a nonHodgkins lymphoma survivor so if others want to support these events it is not the issue. However, do not support those events thinking that you are supporting children with cancer. Thanks for the article again and again.
First, let me thank you for your clear passion for pediatric blood cancer research. If you are considering supporting such research with LLS, you have probably been touched by one of these diseases and wish that no other child or their family suffer today’s cancer experience. We at LLS share that sentiment and so, like you, are committed to helping children with cancer as part of our mission to help all blood cancer patients live better, longer lives. To realize this vision, we provide critical services and support ground-breaking research.
Let me tell you a story about one family we know:
In February 2009 Nancy Potter took her sons, 5-year-old Jonas and 4-year-old Ethan, for their annual check-up. The pediatrician noticed that Ethan looked a little pale, and ran some quick tests. “We had no idea that within 40 minutes of pricking his finger our lives would change drastically,” Nancy told us. “The doctor came back in the room and informed us that his platelets were so low that he was in danger of bleeding internally and that his white blood cell counts were the highest the office had ever seen.”
Soon after, the Potters learned that their precious four-year-old was battling Acute Lymphoblastic Leukemia (ALL). Nancy explained, “My husband and I did not know very much about leukemia. We knew it was a form of blood cancer that was inside the bone marrow but not much else. At the advice of our caseworker...we turned to LLS to help get a better understanding of this cancer.”
The Potter’s utilized some of LLS’s free brochures and DVDs to get a better understanding of the disease and share the information with their children. Nancy recently shared with us, “Today, Ethan is doing fantastic and feels great. His treatment will last 3 1⁄2 years and he will be completely done September 2012.”
The facts about childhood cancers are daunting:
• About one-third of all childhood cancers diagnosed in the U.S. are leukemias.
• ALL is the most common pediatric leukemia and the most common cancer in children 1-7 years old.
• Children are also diagnosed with other types of leukemia, including acute myeloid leukemia (AML) and chronic myelogenous leukemia (CML), and with Hodgkin and non-Hodgkin lymphomas (HL, NHL).
• Recent estimates are that about 4,700 new pediatric blood cancers were diagnosed last year in the U.S., of more than 10,000 cancers in children 15 years of age and younger.
• Research has already led to remarkable improvements in leukemia therapies in children. Now about 9 of 10 children under 15 years of age are expected to survive their ALL diagnosis, due to the use of aggressive multi-drug and multi-year therapies like Ethan received.
• But leukemia still causes more deaths than any other cancer in children and teens, and serious long- term and late side effects remain an unacceptable reality for too many leukemia survivors.
Clearly, more research is needed—and LLS is addressing this urgent need:
• LLS is investing in research to develop new targeted therapies, including targeted drug combinations, that promise more effective and less toxic treatment for leukemia and lymphoma patients of all ages.
• Last year alone, LLS funded almost $51 million of research focused on leukemias and lymphomas, including nearly $5 million specifically focused on pediatric blood cancers.
• In 2009, LLS launched our Quality of Life research initiative aimed at discovering the biological causes of long-term and late effects of today’s therapies and developing measures to prevent or at least significantly reduce these toxicities. Last year, LLS committed nearly $3 million to 15 projects that could help reduce the negative consequences of today’s cancer therapies, including heart and bone damage, infertility, obesity, and cognitive impairments that too many young patients suffer.
Overall, leukemias and lymphomas are relatively rare, especially in children. So, laboratory studies often use cancer cells from adult patients and new therapies are generally first tested in adult patients. As many of the molecular abnormalities that cause particular blood cancers are the same, regardless of a patient’s age, once new therapies that target specific irregularities are shown to be effective in adults, they usually can help children too. Of course, they must be tested in children, especially for safety, but this can happen pretty quickly once an effective drug is in hand.
One of our favorite success stories like this is Gleevec®, the remarkably safe and effective targeted drug for CML patients. CML is quite rare, with less than 5,000 new cases per year, about 100 in children. As soon as Gleevec was approved for adult CML patients in 2001, it was quickly shown to be at least as effective, if not more effective, for pediatric patients. Gleevec was FDA approved for young patients in 2003. In 2006, it was also approved for an even rarer leukemia, Philadelphia chromosome+ ALL, that carries the same molecular abnormality as found in CML and afflicts patients of all ages (25–30% of adult ALL cases and 2–10% of pediatric ALL cases).
Other examples include Rituxan®, Velcade®, Zolinza®, and Dacogen®, all approved based on clinical trials that enrolled mostly or entirely adult blood cancer patients, and now also showing real promise for young patients. LLS helped make these advances possible and many more new therapies are now on the horizon, thanks in part to continuing LLS funding. As researchers learn more about what causes these cancers, they are finding similarities not only between cancers in patients of all ages, but between cancers in entirely different parts of the body. For example, Gleevec has also been approved to treat patients with rare forms of stomach and skin cancers.
We hope that people who care about young patients will rejoice that studying cancer cells from adult patients and testing new therapies first in adults can quickly help children, as do studies that focus exclusively on pediatric cancer cases. Based on reports from our researchers, we expect many more treatment advances as new breakthroughs are occurring in every aspect of research, from laboratory studies to clinical trials.
We at LLS are working towards the day when there are safe and effective treatments for every blood cancer patient, of every age. We are relentless in this mission, and invite you to join us as has theRally Foundation for Childhood Cancer Research—they are partnering with us to fund life-saving research.
Louis DeGennaro, Ph.D. LLS, Chief Mission Officer
You should not be amazed at "how they talk about how many kids get leukemia followed later by saying how rare it is in kids!", as these two statements are not contradictory. They first say that a third of all cancers in children are leukemias, and then that leukemias and lymphomas are rare, especially in children. There are about 60M kids in the US under the age of 15, about 10500 of them were diagnosed with cancer in 2016, and 4700 of them had a leukemia. That is less than 0.01% of the population, which is rare. we should be thankful that childhood cancers are rare, even as we wish they were non-existent, or all curable.
This is great information, but I did have a question… Have you been able to obtain updated disclosures on actual childhood cancer research funding from any of the organizations noted in this article - ACS, LLS, St. Judes, etc.? I have looked at the Annual Reports, Stewardship report, and the 990s for both ACS & LLS but note they no longer provide detailed breakdowns of the "research" dollars spent.
Thank you for everything you do, and any insight you can offer on this.
I also would like to know if there is updated current data from the ACS. I have been posting the numbers that were last reported on here, but a "big" supporter of Relay for Life is challenging me in terms of where the UPDATED information is. She said these stats are from 2010. She wants to know what are they now - because things have changed. Any help you could provide would be greatly appreciated. I know PERSONALLY that when I first found out about my son having cancer (age 11), the first organization I contacted was the ACS. They couldn't help me because they had nothing to help me with. Thank you!!!
This is great information and highlights one commonly overlooked feature of making donations: designated funds. When you make a charitable donation to an organization, they can use that money however they see fit. This is when your donations get spread among administrative costs, fundraising costs and the like. However, you have the right to specify where and how your donation funds are used. If, when you make the donation, you specify that it is to be used for a research project or in a specific area, they, legally, are required to use that money only as you have designated it. You'll need to be specific, so if you're unsure, contact the organization and ask them about their current funds to which your money can be donated. If you've ever sent in money to a March of Dimes letter or to St. Jude's in response to the mailing labels that you received in the mail, then you've already given money to a designated fund. Don't let this power to determine how your money is spent go by the wayside!