Kids With Cancer: 8 Brutal Truths to Choke on
By Suzanne Leigh
Published on the Huffington Post
1) 1 children’s cancer drug OK’d in 20 years; 23 OK’d for adults in 1 year
That drug, clofarabine, for refractory pediatric acute lymphoblastic leukemia was FDA-approved in 2004, 14 years after the last pediatric cancer drug. Meanwhile in 2012 alone, the FDA approved 23 cancer drugs for adults.* The average cost of bringing a drug to market is $1.3 billion. Not surprisingly, pharmaceutical companies favor investment in the larger more lucrative adult market.
2) Targeted therapies target the adult market
Targeted cancer treatments are one of the more exciting innovations in oncology. Not only do they act more precisely on cancer cells, by focusing on the molecular and cellular changes related to malignancy, targeted therapies may be more effective than chemo or radiation and are usually easier to tolerate. While some have gone on to receive additional approval for pediatric use or are being tested on children in clinical trials, no targeted therapy has been developed specifically for a childhood cancer.
3) Kids get 4% of cancer funding
The National Cancer Institute spends 4 percent of its revenue on research for all childhood cancers. Sounds generous when you consider that less than 1 percent of cancers occur in children? Not when you take into account that the average age of a childhood cancer diagnosis is 6; in adults it is 67. When cancer kills, an average 15 years of life is lost in adults, vs. 71 years in children. That’s decades for children to “grow up, have children of their own, create something beautiful or even discover a cure for cancer.”**
Among pharmaceutical companies, that 4 percent sliver of the drug discovery and development funding pie might be even skimpier. BigPharma needs big profits that they can only get from the remunerative adult market.
When reporters cover fatal accidents or disasters, it’s commonplace to identify the number of child victims (“200 people died, including 28 children”). That’s because most of us place a higher value on a child’s life than an adult one. The NCI and pharmaceutical companies do not appear to concur.
4) Scientists still stumped over what causes cancer in kids
Evidence mounts that environment and lifestyle account for the majority of cancer cases in adults –- as much as 90 to 95 percent according to some studies (smoking, alcohol, obesity, diet, sun exposure, sedentary lifestyle and pollutants being the main culprits). But scientists are still baffled by what causes cancer in kids. We know that children with Down syndrome and other genetic conditions are more susceptible to some leukemias and we know that the chemo and radiation therapy used to treat cancer are risk factors, but to date scientists are no closer to knowing how parents can protect their children from the #1 disease killer.
5) ‘Official sponsor of birthdays’ short shrifts kids
The American Cancer Society, the seventh largest nonprofit in the nation with its catchy “birthdays” slogan and total revenue in excess of $900,000,000 in 2011, directs less than 4 percent of its research grant funding to childhood cancer ($26,855,350 of $718,166,682). Donors are given the option of routing their dollars to “where it’s needed most,” cancer research, lung, breast, prostate or colorectal cancer. There is no option for childhood cancers. (You’d hope that would come under “where it’s needed most,” wouldn’t you?) Does the ACS care about pediatric patients having lots more birthdays to look forward to — or only those old enough to have a diagnosis of prostate, colorectal, breast or lung cancer?
6) Survival rates stagnate for decades in some childhood cancers
There have been steady declines in death rates for the more common adult cancers. For breast, prostate and colorectal cancers, these have been continuing for 20-plus years. Not so for kids with many types of cancer.*** Among them:
Diffuse intrinsic pontine glioma, the third most common pediatric brain tumor with an average survival of nine months, has the same bleak prognosis as when the disease was first identified decades ago.
Ewing sarcoma, a bone cancer, has a five-year survival rate that has remained stable since 1983 in older teens (around 50 to 55 percent).
Rhabdomyosarcoma, a soft tissue cancer, has a five-year survival rate that has plateaued since 1979 (40 to 50 percent in older teens and around 65 to 75 percent for the under-15s).
7) The ‘cure’ is more likely to kill kids than adults
Radiation and chemotherapy have saved many young lives, but because they are carcinogens, they can lead to secondary cancers. These can occur in adults, too, but children are more susceptible to their effects and have many more years in which to develop then. Ironically these risks of getting a secondary cancer increase with time. So a child that was “cured” of a cancer is significantly more vulnerable to getting another cancer in their teens — and more so in their twenties — than someone with no history of the disease.
8) Shady charities reap rich rewards from children’s cancers
Three of the top 10 among the “50 worst charities” named in a media investigation focus on helping children with life-threatening conditions, including cancer. These charities spend substantially more on the corporations they hire to raise money than on the children they claim to serve. The worst offender, according to the report, is the Kids Wish Network that raised $18.6 million in 2012 for children with terminal illnesses. Just $240,000 was spent on granting wishes — typically gift cards, coloring books and board games — and millions were spent on generous salaries and consulting fees for a fundraising company, in which the Kids Wish president was also a partner.
*Drugs included everolimus, which is also approved for pediatric use for benign tumors that can occur in patients with TSC, a genetic disease.
**From St. Baldrick’s Foundation
***From the National Cancer Institute’s Surveillance Epidemiology and End Results
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THE MOURNING AFTER NATASHA 
Uncomfortable but necessary reading from a mom telling it like it is.
Hi again Suzanne!
These statistics make me want to throw up! I was too familiar with some but I also learned a lot. You did your research for this post!
Thank you again for raising awareness! I dont get how the biggest killer of children has so little awareness and funding. A part of me will always be a little bitter of how breast cancer gets all the glory! I wish everyone would know that gold means childhood cancer awareness as much as they know about ThePink.
Thank you again for your posts! While I find them painful to read sometimes because of all the emotions it brings back, I could not be more excited to read each one. Each time I read I say a pray for your family. Thanks again
God Bless!
Jen Blakley
Thank you for your research in regards to the lack of funding when it comes to childhood cancer. This is such an eye opener! Shame on big pharmacy, the national cancer institute and kids wish network! Isn’t there a way to allow U.S. voters to try to force NCI to provide more of its funding allocated to children’s cancer research?
Sara and Jen, Thanks for your kind words. I appreciate your last sentence, Jen. You raise a good point, Jonie. I think the NCI is dedicating a little more money to childhood cancers than it used to and the government is coming up with incentives for drug companies to develop new drugs for childhood cancers (let’s see if BigPharma bites, though).
The bottom line is our kids deserve so much more. But until one actually has a child with cancer, we are shielded from all these facts and we define crisis, not as the 12-year-old who dies from brain tumor, but the 45-year-old with cancer, whose prognosis might be pretty good (thanks to all those new cancer drugs!).
I’m showing my ignorance here, I apologize. You explained clearly how chemotherapy is far harder on children’s bodies than on adults. It makes sense. But the cancer drugs that adults are having some success with? Are they too strong? Does success at targeting certain types of cancers not carry over to many of the types of cancers in children? I have heard of many leaps and bounds in cancer research and success rates. I assumed these applied to everyone. I am saddened that is not the case. I am happy to write some letters or sign any petitions that you may know of to do my small part to make this right. Thank you for the information and for your time.
And also, my sincerest condolences to you, and this world, on the loss of your dear Natasha.
Actually chemo is not harder on children’s bodies than adults’ bodies, Heather. The issue is that children are more sensitive to carcinogens and chemo and radiation are carcinogens. A secondary cancer, due to radiation and/or chemo, can occur in cancer patients of all ages — sometimes 20 years after treatment. In someone with prostate cancer, for example, they are usually old when they are diagnosed and might not live long enough to develop a secondary cancer, but in a childhood cancer patient, that secondary cancer can occur in their 20s. It can be more aggressive and deadly than the original cancer.
As for the targeted therapies that I think you’re referring to, these are developed for adult cancers, which are very different from childhood cancers even when they have the same name (brain tumors in adults are very different from brain tumors in children, for example, and require different treatments). Some of them are being studied in clinical trials on children, but we don’t know yet how successful they are. My understanding is that it’s a long shot. The main issue is that no drug company is excited about developing a drug for a childhood cancer, because there’s no money to be made.
There have been successes in some childhood cancers, especially the blood cancers: the leukemias and lymphomas. Five-year survival has gone way up in some types of blood cancers. But children with most types of brain tumor (the #1 cancer killer), neuroblastoma, the sarcomas … improvements have been insignificant.
Thanks for offering to write letters, sign petitions. Will keep you posted on that. And thank you for the condolences.
The 4 percent of funding for cancer research for children may sound very low, but only 1 percent of total cancers are diagnosed in those under 20. By that measure, childhood cancer research is actually quite well-funded at 4 times the rate that would be expected based on incidence. This is, of course, what one would hope would be the case.
Elaine, Please read the rest of my paragraph about NCI funding. You’ve repeated my stats about the 4 percent and the 1 percent, but missed the point about the number of years lost when a child dies from cancer, vs. the number of years lost when an adult dies from cancer.
I read a very good peer-reviewed article from the Molecular Cancer Therapeutics Journal – it is from 2006, but it points to most of the same information you refer to here. The author speaks to why, in the world of cancer research, this adult/child dichotomy exists, how it sometimes works in favor of children (e.g., if the drug just isn’t going to work, that is found out in adult phase trials, and since children’s cancers are much more aggressive, kids don’t have time to find that out), and where it doesn’t — as in, no drugs coming down the pipeline that concentrate solely on childhood cancers. While it is dated, and there is a bit of research to be done as far as pending legislation it refers to that surely has come and gone, and other changes that have to have happened in the 7 years since it was written, I think it still speaks well to the problems that childhood cancer exposes in the entire system of drug research and approvals. The conclusion that I took from it is that children’s cancers have to be treated very differently than any other medical condition known to mankind when it comes to the FDA process (I don’t mean that to sound negative, it’s that they need to think outside the box for kids because kid’s cancers don’t act like anything else on the planet), that pediatric oncologists try very hard with what they have, and that there has to be some incentives — because legislation, regulation, and altruism aren’t working — to make the pharmaceutical industry to take up this task. I will give you a link to it, it’s very short and to the point, and for a peer-reviewed piece, very readable. I hope it helps in your understanding of the “why” things are this way, I find that when I know “why,” I have a clearer path of attack to press for changes since we know the specific point at which the problem falls apart.
Click to access Littlepatientslosingpatiencepediatriccancerdrugdevelopment.pdf
Kelly, Thank you! You make a great point.
I would highly recommend that you investigate the trial and research practices of the big pharma first. If you have not read the Ben Goldacre’s book, read it!!!
Very surprised that moms who have kids with cancer can get behind and endorse this comment:
“…but to date scientists are no closer to knowing how parents can protect their children from the #1 disease killer.”
Wow. That is untrue. Even the President’s council on cancer states that a big thing we all can do is reduce our risk of cancer is to reduce our exposure to pesticides. So having that awesome bugman come once a month to keep your home bug-free, having that lawn guy come once a month to spray pesticide/herbicide cocktails on your lawn so your grass can be green, and of course eating pesticide laden foods – these are all things concerned parents can do immediately to reduce their child’s exposure to known cancer-causing chemicals.
Great eye-opening article other than that.
Well, you’re not quite right there … Pesticides are indeed carcinogens and we need to minimize their exposure, especially in children. But it is their repeated and prolonged cumulative exposure to pesticides and other carcinogens over years that makes children vulnerable to adult cancers. There is no evidence as yet to link them with any childhood cancer. If there were, you would find the incidence of childhood cancers significantly lower among certain populations.
Egran, when my 5 year old son was diagnosed with his inoperable brain tumor, the doctors surmised it had been growing his entire life. As a pregnant woman who ran out of the room every time I turned on the microwave, I’m at a loss as to how my sweet boy acquired his deadly cancer. But thanks for trying to make us cancer moms feel more guilty and question every single thing we’ve ever done around our child even more than we already do.
Amen, sister.
the common manner in which medical pros look at disease burden is person life years lost. Dr Eugene Kellerman of TCH Cancer Center says: Curing childhood cancer would be the equivalent of curing breast cancer. Yet there are huge funding inequalities. Here’s a look at them: http://curechildhoodcancer.ning.com/forum/topics/updated-lies-damned-lies-and
Bob, I’m aware of Kleinerman’s (sp?) breast cancer statement. The funding inequity is terribly unfair to those of us who have lost kids to cancer. (At the same time I want to be careful that drawing too much attention to the breast cancer comparison comes across as “blaming” those people who do have that diagnosis.)
Suzanne, thank you for putting this together. My daughter has neuroblastoma and I appreciate you speaking out about the disparities in funding and research. My experience is that most people have no idea what we as parents are up against.
You’re right, Christine, they don’t (and neither did I before my own child was dx’d). Positive thoughts to your daughter with neuroblasoma.
I would like to see you send this to the President. According to his email explaining why the White House won’t be going gold in Sept. although it will sure be pink in Oct. He said the NCI and ACS are making wonderful strides and…..well the whole letter was bullcrap and only instilled anger in anyone that read it. This was well written and pretty much negates every thing state in the formal letter.
I’m going to look into this, Jami. Thanks for drawing my attention to it.
Not just you, but we all should send this to the President. Harder to ignore if we fill his office with the truth.
Very well written article. My husband passed away from Ewings sarcoma @ 18 (he was dx @ 17, we were high school sweethearts that married when he was told he was terminal and passed 16 days later). This is all too sad. I did not realize a lot of this. Thanks for sharing.
I also encountered that when you are young… no matter what type of research you make… most physicians will not listen to you. They swore he had Ewings sarcoma… a mutated form… He matched all of the signs and sx of mesotheleoma but wouldn’t listen to me because I was only 19. After he passed, they acknowledged that they really never truly knew what type of cancer he had, only after I inquired about donating organs.
Oh my goodness, Ariana. What a tragic place to be in, in your teen years. I’m so sorry to hear that you lost your husband. I have heard cases when the docs have been stumped about making a cancer dx, but they should have shared their reservations with his family, and you should never have felt that your opinions were invalidated.
Suzanne, thank you so much for research and publishing these facts! I have started a non-profit called Bold for Gold Foundation: Childhood Cancer Awareness and Hope. For Awareness, we are creating curriculum for the public schools all about the signs and symptoms, facts, types, and what cancer does. And how to be a great friend to someone with cancer. We also are helping other non-profits that deal directly with childhood cancers by providing funding for their printing costs to get the word out. I am the one who runs the Facebook page, and I make graphics about the facts of childhood cancer. For Hope, we are mailing care packages to cancer kids all over the world, and giving out care packages to our local families right here in Tulsa, OK. Our big project right now is providing backpacks full of school supplies for the cancer child, and their siblings. As we grow, I want to provide funding to the families to help pay bills, buy groceries, pay the mortgage, and to financially recover from being on active treatment. The reason I am writing all this is to ask your permission to use your facts in this article for our 30 days of Awareness in September for Childhood Cancer Awareness Month. Everyday I want to post a new fact about childhood cancer on our Facebook page. Let me know your thoughts! My website is http://www.boldforgold.org, facebook is http://www.facebook.com/boldforgold
Thank you so much!
Sincerely,
Kim Fahrion
You can definitely use this article for your new foundation, Kim. Best of luck with Bold for Gold.
I would like to raise funds to donate to children’s cancer research. I’m glad I found this post because donating to a reputable charity is a concern of mine.
Good luck, Lorraine, and thank you.
Please consider donating to Bold for Gold: Childhood Cancer Awareness and Hope! 100% of all money donating goes to the children battling cancer and their families. http://www.boldforgold.org
Actually Kim, either you misspoke when you said that 100% of all money goes to the children and their families or the information posted on the website is incorrect. From the website link you posted, that statement is not correct where it clearly states that it’s 90% and not 100%:
“90% of every dollar donated goes to Awareness or Bringing Hope.
•30% — Awareness Efforts
•60% — Family financial assistance
•5% — General business costs
•5% — Salary and contract work”
I agree that awareness efforts and financial assistance to families is crucial, but your reply was posted on a comment about someone looking to donate to childhood cancer research. According to the numbers on the website, research isn’t funded by your organization, so I find your solicitation of donations there to be in poor taste. It seems to me from the previous comment that the poster is looking to donate to a more established 501(c)(3) charity with a proven track record.
I do appreciate you trying to bring awareness to kids with cancer as I lost my own six year old hero to cancer. I also hope your non profit does well and I truly wish you the best, but those “little” details matter.
And to mominmourning1, thank you so much for your article. I’m sharing it across my social networks in hopes of raising awareness about lack of funding for kids with cancer. I’m so sorry for your loss and I’m sending so much love to you and your family.
Thanks for reading it, Sue, and for spreading the word. I am so sorry about the loss of your 6-year-old.
Sue, I am the one who runs Bold for Gold. You are correct in the fact that I am not more established, but I want to be. I am doing whatever I can to Bold for Gold off the ground. I am a single school teacher in Oklahoma who pours most of my salary into helping families who are on the cancer journey with their children. And yes, you are correct, I do have it started on my website about the 60-30-5-5, but right now, I am not receiving any donations at all. So nothing is going anywhere, except for what is coming out of my own pocket.
We have some amazing goals for Bold for Gold, like writing curriculum to get into the public schools (like STD’s and/or AIDS/HIV) so our children are being taught about Childhood Cancer, who can then become educated adults who support Childhood Cancer funding, and funding becomes research, and research becomes a much needed cure. Any money that is just donated, 100% goes back to the families/awareness, and someday, grants for research. If something is sold for money, then I will split it up. But right now, nothing is being sold, except for my Bold for Gold awareness signs, where I am losing money on it to sell to cancer families to keep their costs down. I am a non-profit, and I am waiting on the official 501(c)(3) paperwork back from the government. I absolutely agree, and thank you so much for calling me out. Forgive me. Seriously, forgive me.
All I am trying to do is to get the care packages sitting in my living room in the mail, due to the fact I can’t afford to mail them, because I need to buy groceries to eat. I literally have 7 care packages sitting in a bag that are filled, but I can’t afford to mail them, and 33 others that aren’t filled, due to not being able to afford to fill and mail. So asking for donations is all I can do, so I can someday help families pay their mortgages, pay medical bills, buy groceries, and send care packages to their sweet heroes.
I am so sorry to hear about your 6 year old. That breaks my heart. We lost 3 heroes in Tulsa in July. I will change the statement on my website to say 100%, which I really mean. If Bold for Gold were ever to get big, meaning making more than 0 dollars a month, I would never pay myself huge salaries like some of the other organizations. I never want to make more than a teacher salary in Oklahoma, which is never more that $44,000, after 30 years of teaching. And honestly, I would give most of my salary away to families on the cancer journey, like I do know. I will continue to teach, even though my true passion is childhood cancer, so I can afford to support my non-funded non-profit. I have only had one person donate to me in 6 months, and she donated $10.00.
I have spent hundreds of dollars out of my own pocket to keep Bold for Gold afloat. I take meals to the hospital to families admitted, I take meals to their homes, I take desserts when the hair falls out, I am on the CureSearch Committee in Tulsa, I donate my time to take pictures at No-More Chemo parties, I spend almost every weekend going to people’s houses who have kids battling cancer, to help clean, or spend time with their kids so they can have a date night, or help with garage sales to donate all the money to find a cure. I promise I am not saying all of this out of anger to you, or anyone else. I am probably saying this out of frustration. Frustration in the fact the no is donating, no one is paying attention to childhood cancer, kids are passing away everyday, and no cares. No one is paying attention to these very precious children and families. No one is doing anything. It is exhausting to think I am battling a losing battle with the public.
My parent’s haven’t even donated to Bold to Gold. They really don’t understand the need for awareness, or how many kids are diagnosed a day. No one, but one, has donated to Bold for Gold. That is fine if they are donating to CureSearch or St. Baldrich’s or St. Judes, but guess what…most people are not donating at all. It makes me sick. It makes me sick to think that 99.99 percent of the population just don’t care. Anyways, it is late, and I need to go to bed. It is finally September, and I have lots of things to do tomorrow! Time to PAINT THE TOWN GOLD!!! Thank you, and have a wonderful night!
This is all so sad I lost my little boy liking 1 month being 9 yr old he was cancer free for about 1.5 then developed a brain tumor in result lost his fight he started out with in 83 a very rare child cancer ewing sarcoma please help our children to where other children don’t suffer the pain my Danny did or no other parent suffers the loss we have
Thanks a lot.The articles on your site is really helpful and usable for visitors.excellent blog.
Presently raising money for Go Gold month of September. Where is the best place to send the money that all proceeds will go to help for a cure for these angels?💛💙💛💗💛
Thanks for raising money for childhood cancer, J. If you are looking for childhood cancers in general rather than one specifically, the ones that have higher ratings are CureSearch, St. Baldrick’s and the Pediatric Cancer Research Foundation.
Hopping over from HuffPo so I could leave a comment. THANK you for this excellent research, which I will share with my followers. I have been researching children’s cancer charities to tell people about, and I’m glad that you recommend the same three that I have. Having lost a six year old son to a brain tumor, I get sick to my stomach every time I hear of another sweet child getting diagnosed. It’s a tough, tough thing – cancer research for children, but it has to be done. Hugs and love to you.
Thanks for reading, Kathy, and I’m sorry you lost your 6-year-old to this beast. Yes cancer research has to be done and I hope that more donors will give it precedence over endeavors that offer treats that tend to make the donor feel good — but not necessarily the child.
Protect our children. Stop ignoring their cancers.
Agreed, Marilyn!
Thank you for this excellent article. It sums up and validates all of our anger in a tasteful way. We lost our 10-year-old son to the evil Ewing’s Sarcoma just a little over two months ago. He battled it for almost 8 years :(. He had to endure an internal hemipelvectomy at 3 years old and thoracotomy at 4 years old and radiation to his sacrum and spine which caused a later onset of pain. We basically had no more options because the horrible treatments were causing such bad quality of life. The Ewing’s did spread to his skull in May and we radiated due to severe headaches and nausea. He passed away on July 24th in unbelievable pain despite receiving THOUSANDS of milligrams of iv dilaudid that day. Maybe if more influential people experienced what we have, there would be more awareness or funding. I don’t know. All I know is that our lives are completely shattered, seeing Pink [for breast cancer awareness] everywhere is like salt on the wound.
I’m so sorry you lost your son and his last days were spent in great pain, Amanda. Breast cancer awareness month is salt on the wound for us cancer parents — especially the moms, because most people assume we will pledge instant sisterhood to women with breast cancer, when usually their prognosis is pretty good. I try to remember that this disease in its most invasive high-grade form does claim many lives, even if those lives are decades older than our late children. Keep talking about your 10-year-old. And take care of yourself. Those first few months are so challenging — and lonely.