PAC2 Response to The American Cancer Society's Post - Bald Barbie Demand is an Over-Reach

Dear American Cancer Society,

for your convenience we have compiled some additional responses to your article “Bald Barbie Demand is an Over-Reach” re-posted below. These responses were posted on the People Against Childhood Cancer (PAC2) website (www.PeopleAgainstChildhoodCancer.org) or Facebook page by PAC2 members. PAC2 is a grassroots advocacy group that does not raise funds but seeks to raise awareness of childhood cancer and unite the childhood cancer community to speak as one voice against childhood cancer.

While you raise many controversial points in your article, one we do take exception to is your statement “Childhood cancer is exceedingly rare.”

We could debate statistics (e.g., at the September 2010 Pediatric Cancer Caucus, Dr. Eugenie Kleinerman, the Head, Division of Pediatrics, Children’s Cancer Hospital at MD Anderson Cancer Center was quoted as saying: “Curing childhood cancer is the equivalent of curing breast cancer in terms of productive life years saved” or the fact that about 1 in 300 kids will be diagnosed with cancer before age 20 or the fact that the incidence of childhood cancer has increased 29% over the last 20 years or the fact that a diagnosis of childhood cancer is a life-long affliction where 2/3 of five-year survivors face long-term health issues from the ‘cure’ or the fact that 1 in 5 of our five-year survivors will die from disease-related causes before 30-years [does a 35-year old dying of childhood cancer sound cured?])….but that would not address the fundamental issue.

America is simply not putting its best foot forward in saving our children from childhood cancers - the leading cause of death by disease for children.

In every other human endeavor our society strives to first protect the young, the innocent, the vulnerable: our children. Yet children battling cancer are virtually ignored.

Large, national cancer organizations do not focus efforts on children’s cancers (e.g., ACS directs approximately 1% of its funding to childhood cancer research). The pharmaceutical industry also views childhood cancers as “rare” and conducts very little research into better treatments because there is no profit motive (please see http://www.KidsvCancer.org and the Creating Hope Act for innovative legislation to incentivize pharma to research childhood cancer treatments). The NIH/NCI devote less than 4% of their budget to childhood cancer research.

In our opinion statements such as yours trivialize childhood cancer and demonstrate a true lack of understanding of the issues surrounding the challenges our children and the childhood cancer community face. This occurs at a time when the childhood cancer community is uniting and rising up to demand change. So, while it may not have been your intention, thank you for galvanizing the efforts of so many to speak united as one voice against childhood cancer.  Together, we call on the American Cancer Society to do better.

In 1852 the British frigate H.M.S. Birkenhead sailed from Ireland with 638 people on board, including 20 women and children. It struck a rock and began to sink. The crew was unable to launch lifeboats to save all passengers and crew.  If the entire crew tried to board the few working lifeboats, they would be swamped and all would be lost. Lieutenant-Colonel Seton commanded his crew to stand fast, for should they make for the boats, they would endanger the lives of the women and children. The Birkenhead broke up rapidly. In the tragedy 445 people lost their lives, yet all the women and children survived. The Birkenhead has secured a place in history due to the gallantry of her men, who, in the face of great danger, allowed the women and children to escape in the boats before trying to save themselves. Thus “The Birkenhead Drill” was born: Women and children first! And we know 13,500 moms of children that will be diagnosed with childhood cancer this year that would say to a child: “Take my place”.

Can’t we all be as gallant as Lieutenant-Colonel Seton and his men?

Please ACS — share with your audience the true facts about childhood cancer.

Sincerely,
PAC2

PAC2 Member Comments:

- That is approximately 1 child in every classroom.. Where do they find these people??

- My child was that 1 in 300! Childhood cancer is not rare in my world.

- My daughter has had two different cancers in four years. . .she is 9 now. First dx was at age 5, and second dx was at age 8. Rare. . .I think not.

- how can ACS call 1 in 300 rare??? And yet when it is your daughter calling it rare is an insult

- My daughter lost her hair twice.. From the first time in treatment foe AML and the second time in treatment due relapse. She wasn’t hung up over the hair loss. As a matter of fact we observed that it wasn’t other children who had a traumatic reaction to her baldness.. The kids they were curious never judgmental. But it was the adults my daughter encountered that were the most impacted. Some would panic and flee.. But most profound were the survivors themselves.. It was in their eyes.. A bonding and a sense of mutual respect.. A badge of courage.

- I lost respect for ACS and the whole pink push a long time ago.

- We parents are finally looking beyond our own grief and/or exhaustion to at least try something and therefore we are a lynch mob. The Adult Cancer Society disclaimer is what put me over the edge and here was my response: Sorry IF, sorry IF? So not only are we Cancer Parents littering society with our totems, a lynch mob and bullies but now we’re imagining offense? No deal Adult Cancer Society, no deal. An apology reads “We are sorry for” not “if”.”

- This is why I only support the organizations that really support our children..
I know because they helped my daughter, National Children’s Cancer Society, CureSearch. Make a wish, St Jude they are on my list because they have done more than anyone for pediatric cancer.

- Wow! Just read the article…..I wish to remain silent, as the words that want to spill out of my mouth I would regret. I was told if you have nothing nice to say don’t say anything at all. Well, I have nothing nice to say to ACS. Except…How would a child be terrorized?? The doll would be purchased for a young girl dealing with being bald…so in other words are you stating that a BALD child with cancer is terrorizing to look at???? Makes no sense to me.SHAME ON YOU ACS!!!!!

‎- “Childhood Cancer is exceedingly rare” says the ACS. Who are you trying to kid????:((((

- They don’t seem to have a hard time finding children battling cancer to use for their newsletters, and advertising for relay for life.

- This post shows how out of touch the Cancer Society is. How sad!

- That is awful. Would the ACS like to come to Children’s Memorial Hospital in Chicago where my son is being treated for leukemia and see him and all the other children battling pediatric cancer?!? Then maybe they can see how “rare” it is. Shame on you, ACS.

- It’s not rare to my family – 1 out of my 2 children were diagnosed with cancer. Not rare at all… nor is it for all the families we see at the hospital fighting the deadly disease. Boils my blood!

- Uggggh! SO maddening! I don’t even know where to start. The one thing I do know is that ACS doesn’t represent us. Society? I don’t think so! And as the chief of pediatric oncology at MD Anderson (i think that’s who said this) pointed out, if we add up productive life years
saved, childhood cancer equals that of breast cancer. It’s up to us — the families and communities affected to push this.

- omg…this is terrible….I just lost my baby grandaughter to Neuroblastoma…She was 3….diagnosed at 17 months….I can not believe ACS could even say this……

- You know whats irritaiting “kids need a bald barbie like a breast cancer patient needs a pink kitchen aid mixer” I agree to the extent that I do not want to see millions of gold products with nearly nothing going to childhood cancer research. That being said, this statement is comparing apples to oranges, kids DO need things that bring them hope! Kids do need toys like them, it harbors self worth, and makes them feel good. Donate money to research instead, well…people have to know kids get cancer in the first place for that to happen, but the good ol people over at ACS seem hell bent on making sure no one knows that! I never likes the ACS..for a variety of reasons, here is one more.

- Consumer bullying? If we as parents are so powerful we would bully pharmaceutical companies to focus on better, targeted, less toxic treatments for our kids.

- ‎10 children every day in the UK are diagnosed with cancer, ACS, nothing rare about that……..PLEASE stop using that word “rare” as it undoes so much of the work that individuals and organizations are attempting to do. We/they are attempting to inform our people that it is
NOT rare and also what the symptoms are of this devastating disease. This illness took my nephew at six years of age so tell me it does not happen often………..less children than adults YES but rare NO!!!!

- Thank you, American Cancer Society, for effectively telling the world that our kids aren’t important.

- http://www.standup2cancer.org/node/3738 – “rare”

- “Sadly, some 1340 children under age 14 are projected to die from cancer this year”
ummm…seems like a lot of kids to me!!! My son died last year of Neuroblastoma -

- I wonder how rare the 46 families who were just told their child has cancer today feel it is? I wonder how rare the 7 families who just watched their sweet angel slip into heaven today feel it is? I wonder how rare the 1 in 330 who will develop cancer before the age of 20 think it is? I can tell you that rare is the LAST word I would use!!!!!

- The only thing more ‘rare’ than childhood cancer is common sense at the ACS. This is infuriating.

- My daughter must be super rare because she had 2 cancers in 2 years. She was diagnosed with a Germ Cell Brain Tumor in 2008 and was treated with Chemo and Radiation and in Nov 2009 was diagnosed with treatment related AML and had to get a bone marrow transplant in 2010. She is now recovering from a stroke which is thought to be treatment related as well. The ACS is focused on adults because they are the ones donating to them not our kids. Why does the Children’s Mercy Hospital need to add rooms to already crowded oncology floor if this is so rare?

- I can name 5 children with in 10 miles of my house that lost their lives in the past 6 months to neuroblastoma…& these are only children I knew…I can only imagine how many others have passed in the Boston area alone…It is NOT rare….

- I am absolutely sickened by this article. As a volunteer with the ACS and a two time cancer survivor, I WHOLLY believe there needs to be more funding from the ACS to childhood cancer awareness and research. I am working on implementing a program for the ACS, specifically for CHILDHOOD CANCER AWARENESS AND RESEARCH. I have been affected by cancer, twice, neither of them being breast cancer. We are in a new millenium since ACS started and ACS needs to step up. This article is completely RIDICULOUS and you, ASBECKER, should be completely ashamed of yourself, for your thoughtless comments about the “stats” of childhood cancer. Really? 1 child is too many!!! WE, ASBECKER, need to be the
voice for these children, the advocates, the investigators and the supporters. I am so completely flabbergasted at why you would even write this article, let alone POST it!!!! YOU, ASBECKER, DO NOT represent those of us that are on the front lines of ACS, fighting cancer, raising money for awareness and research and volunteering for the programs that ACS offers to cancer patients and their families. I guarantee that you, ASBECKER, have never stayed up all night, at a Relay For Life event, holding the hand of a caregiver that recently lost a family member, cheering that cancer survivor on, as they walk the track, using a walker or cane, watching the youth of our communities help fight back against cancer with their fundraising efforts. Whether Mattel makes a bald barbie or not, should not be ANY or YOUR concern, what should be YOUR concern as a “national media relations” for the ACS, is what can the ACS do to change the amount of money that NEEDS to be going to CHILDHOOD CANCER RESEARCH!! I, as a volunteer with ACS am going to continue my efforts in finding a cure for cancer, ALL CANCERS!!! I will also be watching to see if ACS, nationally and worldwide, will step up and endorse the BACC PACC (Bringing Awareness to Childhood Cancer by Pedaling Against Childhood Cancer) event. This is a brand new event, that the ACS office in Phoenix, AZ, is proud to be a part of. I am truly concerned as an ACS volunteer and as a cancer survivor, about your position within the ACS, ASBECKER. I am the FACE of the ACS, you are
NOT!!! I freely give my time and efforts to something I believe in, would you, ASBECKER?

- When my 4 year old daughter’s hair fell out, she took scissors into her room and started cutting away on several of her Barbie’s hair. She slept with her “bald” barbies every night until her hair started coming back in. I don’t know how many times that she was mistaking for a boy
(even when wearing pink) or had other kids commenting about her hairloss. The bald barbies helped her self-esteem. It was important to her. Before writing a idiotic article, especially coming from the ACS, put yourself in these kids shoes and walk a mile.

- Wow we have done the relay for 5 years and I am not so sure we will be a part of it I have done this for my daughter who was 4 months old when diagnosed with AML!!! Wow I am sickened by the thought that they would say its rare BS!!!!!! Its just UN-AWARE you dumbasses!!!! Maybe if we had more awareness you stupid itiots wouldnt think its so rare!!!!share the breast cancer awareness with our kids!!!!!!!ughhhhhhh!!!!!

- what??!??

- Consumer bullying my butt! We sit thru how many commercials and displays that are thrown upon our kids to ask for Mattel toys! That’s not bullying???? Loved the part about how the Bald Barbie could cause more harm than good! Seriously???? Our problem as Americans is we put to much faith in corporations and “societys” to have our best interest at heart. Shame on you ACS! How much money did Mattel donate to your organization? and how did you donate to childhood cancer research???????

- If childhood cancer is so rare, I wonder why St. Jude has so many commercials on TV? I wonder what St. Jude spends the $600million+ in donations it gets each year. There must be a lot of silly people out there supporting them. Why did Toys R Us support Alex’s Lemonade Stand, because they were thirsty? I don’t understand why anyone would shave there head for St. Baldricks either then? If it is so rare, why does US News & World Report spend the time to rate the hospitals that treat our kids? Rare or not, it does take the suffering and pain away from the children and families fighting it. Making comments like that just undermine efforts to cure it.

- This is my issue on the Barbie thing. If someone thinks it’s dumb or a waste of time, then DON’T support it. Let others waste their own time on their own causes. Why belittle and degrade it? Why the attack this movement seems to be getting? I’ve never seen anything like it. BUT – when it comes to a group like ACS, HOW DARE they have an opinion on this AT ALL?!!!!!! ACS won’t support anything that could take away $ for THEM. And it’s no secret they could care less about pediatric “rare” cancers… YET they plastered my son’s bald headed picture all over the media and publicity the year we walked while he was in treatment. DISGUSTING how they USED him to get more sympathy and $$ yet couldn’t care less about actually finding a cure for his cancer. ACS disgusts me. Add this to their already huge pile of crap!

- This writer is the Director of Media Relations for ACS and epitomizes their entire organization. What an ass! I suggest we each write him a note telling him how “exceedingly rare” feels.

- I believe this blog post is a smoke screen for the real agenda… Fund raising revenue competition…According to charity navigator, American Cancer Society (2010 data) is in negative growth, -2.4%… AND childhood cancer charities are growing: St. Jude CRH, which takes in amounts comparable to ACS,- 5.0% revenue growth; St. Baldrick’s Foundation 20.4% growth; ALSF 7.4% growth; CureSearch 9.2% growth; … The Bald and Beautiful Barbie (and GI Joe) campaign is increasing awareness which could increase donations to childhood cancer charities…. Plus it is clear to all advocates for Childhood cancer charities that ACS offers no services for children or teens during treatment; limited “information resources” and pitiful levels of research dollars…. Their donation appeals always feature children…. Kids are their “pity Factor” and the jig is up if more CC advocates get the public’s attention…..

- Rare?? Our 1 year old son lost his battle with brain cancer on 2-16-11. If they could ask our son if he thought it was rare bet he as the one going through cancer wouldn’t say it was rare and neither would we.

- I want to Like your comment, because childhood cancer being called “rare” pisses me off too, but I can’t like your post because of your precious son leaving too soon :(

- ACS, I ‘unlike’ you.

- They are more than welcome to visit my 4 year old daughter who was diagonsed with ALL leukemia and the other children who have cancer at cook childrens hopsital. Childhood cancer needs to be addressed!!!! When I take my child to clinic for her chemo, I don’t see
it as rare!!

- My daughter passed away on 5-27-11 of neuroblastoma! I would give anything to have her here with me again and hate to think that some people just brush off childhood cancer as “rare”…It is not rare. When a hospital floor is filled wtih patients day in and day out that is
not rare! I feel like my family is working ourselves to raise funds for childhood cancer awareness and am so glad that we are providing it to curesearch instead of the ACS!

- My daughter is a 3 1/2 year survivor of ALL…diagnosed 1 month shy of her 16th bday. As a senior in high school donations for that years Relay of Life were a tad sluggish to begin with. Unaware of my daughter’s experience, the mom of the ACS liason to the high school stated,
“We would see more donations this year is there were another diagnosis in the high school.” My daughter was stunned. I lost all respect for this organization. Obviously my opinion was well founded…shame, shame on them!

- There is a wonderful organization that has created Chemo Duck to help children who are going through cancer treatment. The duck has a bandana on his head and a removable central line. My daughter who was three when she was fighting cancer loved that duck, still does today. While it gave her great comfort at a time she needed something to relate to in the way a three year old can, a bald Barbie would have lit up her little world. She loved playing with Barbies and for a little girl with no hair there would be no better toy than a bald Barbie. There are so many options for Mattel here that could be a win win for them and the children. They don’t have to produce millions of bald Barbies. Maybe just sell them online or donate them to peds oncology depts and on request for children whose moms have lost their hair. The positive pulicity would be more than advertising money could buy. And no where did I see the figures that 30,000 to 40,000 children are in treatment every year for cancer. Many seems to look at only the new cases each year and fail to realize that children relapse and can spend many years fighting cancer, it does just end because the calendar year did.

- Don’t tell me that Childhood cancer is rare! I survived from a rare cancer when I was 4 years old. That was 40 years ago. I can’t believe that you can say that Childhood cancer is rare or even think of comparing it to the odds of Breast cancer. Take your blinders off! Children
by the dozens are being diagnosed with cancer every day. They are being diagnosed with all forms and you have the nerve to compare it to only only one type of cancer! How ignorant can you be? I have been going to Relay for Life for almost 10 years. I may not this year unless you apologist to everyone and rebute.

- I really hope the ACS looks at this post and sees all of the families that have lost a child, watch a child struggle thru chemo or a loved one see the pain in a child’s eye wondering why they are sick and not “normal” like other kids…I might just have to print it out and send
it to them.

- It could very well be a publicity stunt.. That would make it even more shameful.

- it was a horrible article and should be completely pulled. So very incorrect in facts. And so very rude to anyone who has been impacted by childhood cancer — maybe i should have my 5 year survivor who is 5th grade write a book report on it and tell these insensitive goons waht
she thinks

- What a mean spirited article. Very rare? Puh-lease. What incredible gall!

- Maybe they should come to our small town where two elementary school children died of cancer last school year.

- People need to boycott Relay for Life as they give nothing to childhood cancer research.

- PAC2, I’m as appalled by this article as everyone else, though not as surprised as most seem to be. I am, however, SHOCKED that the ACS is a “partner” in the group “Alliance for Childhood Cancer”. Our family has been to Reach the Day in D.C. with CureSearch in the past. I felt like we were being heard and making a difference. But I’m beyond disgusted that we’re being asked to come to the “Childhood Cancer Action Day” that is being held in partnership with an organization that would write THIS article!

- Idiots!

- Proud mom of montana… Leukemia survivor

- Rare my A$$ my 4 yr old son has brain cancer. Medulloblastoma. Dx at age 3 1/2. This is a very aggressive form of cancer and only thing that really kills it is radiation! My son is the third brain cancer person on his fathers side of the family. So being told childhood cancer is rare… My you know what!!!! Shame on Andrew Becker!

- My daughter is one of the “rare” kids to get cancer as well. We are fortunate that she is 5 years off treatment and doing great. She is half bald as a result of the radiation treatment for medulloblastoma. The condescending attitude of this “author” bothered me

- he compared cancer risk to risk of a lightning strike!

 

Bald Barbie Demand is an Over-Reach
Posted on January 13, 2012 by asbecker

You may have seen in the news that a Facebook campaign is underway to pressure Mattel, the maker of Barbie Dolls, to manufacture a bald Barbie. Cancer is one of, but not the sole reason for this campaign. The group’s Facebook page notes,

“We would like to see a Beautiful and Bald Barbie made to help young girls who suffer from hair loss due to cancer treatments, Alopecia or Trichotillomania. Also, for young girls who are having trouble coping with their mother’s hair loss from chemo.”

To the extent that this effort is about fighting cancer, we should ask ourselves what it accomplishes, who would benefit, and while we’re at it, how about asking if a bald Barbie could in fact do more harm than good for kids and parents, not to mention Mattel.

In a world already littered with cancer totems such as rubber bracelets and pink everything (a limited number of which are from ACS initiatives) , do we need one more thing whose function is to “raise awareness” about cancer? Is raising awareness worthwhile?  Over at Mary Tyler Mom, who herself is the mother of a child who died from cancer, the answer is a resounding “no.” She makes the excellent suggestion that a donation of $10-$20 to support cancer research would make far more of an impact than buying a doll.

We know that funding more research is key, and every dollar helps, but who would benefit from sales of these dolls? Would it really be about fundraising?

The downside to raising awareness has been well documented by activists in the breast cancer arena. Awareness of breast cancer, for example, has been so thoroughly achieved, and many women are so afraid of the words breast cancer, that about one in 20 who are diagnosed with LCIS, a condition that may lead to breast cancer, are choosing bilateral mastectomy; the surgical removal of both breasts.

This isn’t to say that awareness doesn’t have an important role in defeating cancer. It can be incredibly important when it comes to informing people about ways to reduce risk or about getting recommended screenings regularly. But there may be better ways to attack childhood cancer. Just like radiation and chemotherapy, awareness must be deployed thoughtfully and carefully.

Childhood cancer is exceedingly rare. I would also argue that cancer is rare among the age group of women likely to have daughters young enough to play with Barbies. Women have about a one in 50 chance of developing any kind of cancer before the age of 40 . Which brings me to the claim that bald Barbies can help improve the self-image of little girls who are faced with having lost their hair, or seeing their mothers lose their hair. If they are mass marketed, many of these dolls will end up in the hands of girls who luckily aren’t likely to be touched by cancer in themselves or their mothers. But could they end up being terrorized by the prospect of it in a far outsized proportion to their realistic chances? There is no reason to create this sort of fear. It’s why we don’t see advocates calling for lightning strike dolls.

My final concern is the no-win position Mattel finds itself in. Last year the company went above and beyond, and made one bald Barbie for a four-year-old who was going through chemotherapy. Now the company risks a severe backlash of ill will if it does not accede to the demands of the social media mob. After all, what is more sympathetic than a little girl with cancer? How could this corporation be so unfeeling as to not make the major investment required to put a new product on store shelves? What happens when the next group demands a custom Barbie to represent its social concerns?

Sadly, some 1340 children under age 14 are projected to die from cancer this year. Each one is a tragedy, and they and their families deserve sympathy and support, but it is critically important to pull back from this exercise in consumer bullying and ask whether the need this movement is rising to meet is as big as imagined, and whether it will result in any meaningful support reaching those who need it.

 

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So glad you saved ACS blog post before they changed/deleted it......

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