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The Oncologist, the Patient and CKN — Sharing Knowledge

The Failed Arms Race of Childhood Cancer

FailedArmsRaceby Jonathan Agin, CKN Section Editor

 

Imagine for just one minute this scenario:  A super-power sending its soldiers off to defend itself with 18th century muskets against a very well armed foe.  Would we be so ignorant as to think that these soldiers would stand a chance?  Of course not.  It would be nothing short of a complete slaughter.  So, why are we arming children fighting cancer with weapons that are in some cases forty to fifty years old?  Then, five, ten or even twenty years down the road, when the “survivors” end up with long-term health issues, or worse yet, die or contract secondary malignancies, why have we labeled these kids as cured in the first place.

Last month, I wrote about the overall message regarding our success rates against childhood cancer.  The mainstream thought process is that there is an eighty (80%) percent cure rate for childhood cancer with current conventional therapies.  Recently, I had the opportunity to address this point at the Childhood Cancer Caucus meeting on Capitol Hill in Washington, DC on September 19, 2013.  My point to the members of congress and the other people gathered in the audience was that this message was significantly hurting our cause.  Another childhood cancer advocate immediately followed-up on my point and addressed the very issue of what exactly being “cured” means and how misleading this concept remains.  She shared her daughter’s tale of survival from childhood leukemia.  Some twenty years later, her daughter is left with major life-long health issues that have impaired many of her daily functions including sight and hearing.  The very treatments that “cured” her daughter have left her significantly impaired for the remainder of her life.  Is this the “cure” we are talking about?  More importantly, is this the type of cure we are accepting?

 

The simple fact is that the children treated today are being sent into battle with outdated drugs, leaving them impaired with life-long health issues and the real chance of secondary malignancies and death.  Statistically speaking, thirty-four percent of children who are “cured” will die within thirty years; twenty percent of these kids will die within the first 5 years after being labeled “cured.”  Twenty-five percent of these kids will survive thirty years but suffer mild to severe chronic health conditions.  Nineteen percent of kids will suffer severe and life-threatening health conditions as a result of treatment.  Finally, twenty-two percent of kids that are “cured” will live without any significant health impact.[1]  Do these numbers excite anyone?  They certainly do not thrill me.  This discussion does not even touch upon types of childhood cancer such as DIPG, an inoperable brain tumor, which has no available treatment.  I should know, I watched as DIPG took my four-year-old daughter Alexis.

 

What is behind these grim numbers?  Underlying these statistics are the barbaric and caustic treatments that we utilize in the name of curing kids with cancer.  Of course, the same commentary regarding many of these types of treatments can be made about current therapeutic regimens for the adult population; however, one difference exists in my opinion.  Children are not simply small adults.  Drug development for childhood cancer lags behind in more than a significant manner.  In many instances, it is almost completely non-existent.  There has not been a single new pediatric cancer drug approved in the United States in well over twenty years.[2]  New drug development specifically for children with cancer has simply not been a priority on the federal level.  Despite the lack of transferability in many instances, there are generally no current mechanisms to ensure that drugs being developed for the adult population are even tested in pre-clinical settings on childhood cancer cell lines.  It is a complete failure of our approach that we force children to fight cancer in this fashion.  Despite the efforts of so many amazingly dedicated pediatric cancer researchers and advocates, the current process of drug development in the United States is all but ensuring the continued use of decades old treatments that leave these children scarred and impaired for life.

 

There is some hope that this equation may change a little south of the Canadian border.  With the passage of the Creating Hope Act, a piece of legislation that incentivizes drug manufactures by providing vouchers for expedited review of another drug once they place into development a drug for a pediatric rare disease, there is market incentive to help children with cancer.  This market driven shift will take some time to bring new compounds to market.  And thus, in the interim, creating awareness of the plight of children with cancer is the best mechanism to overcome the incorrect assumption that we are winning the proverbial war against childhood cancer.

 

Before my daughter Alexis was diagnosed with an inoperable brain tumor in April 2008, I was under the impression that children diagnosed with cancer lost their hair, were treated by St. Judes in Memphis, and were cured living long happy lives.  This belief was the one sold by the masses and even some who operate within the childhood cancer space.  It was the happy story of childhood cancer and the amazing medical and research community.  I found out the hard way through watching my daughter pass away that this simply is a fiction.  It is a story wrapped up with a nice bow, sold to the masses to entice donations for the feel-good side of childhood cancer.  It belies the reality of so many parents who have watched as their child is lowered into the ground, or parents who live with the life-long issues caused by antiquated treatments and outdated adult drugs.  As a society, we would not accept arming our soldiers with 18th century weapons; why then do we accept arming children with cancer with similarly outdated weapons?  It is frankly unacceptable.

 


 

[2]  http://mct.aacrjournals.org/content/5/8/1905.full See also http://www.kidsvcancer.org/thecreatinghopeact/

 


 

jonathanaginSMALLJonathan Eric Agin is a childhood cancer advocate, speaker  and an attorney (www.jonathanagin.com) in Washington, DC. He is married to Neely Agin and is the father of Alexis, Gabriel and Trevor Agin. Alexis was diagnosed in April 2008 with a tumor in her brainstem and battled for 33 months before passing away on January 14, 2011. Mr. Agin, along with his wife, run a Washington, DC chapter of a pediatric brain cancer foundation. In his spare time, Jonathan participates in endurance events, such as triathlons and running races to raise increased awareness for childhood cancer.

 

 

 

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19 Responses to The Failed Arms Race of Childhood Cancer

  1. Dalia Taylor says:

    Keep up the good fight!

  2. Thank you for sharing this important set of information, Jonathan, and please don’t stop reminding our lawmakers how important it is to never let up on the research that will save more families the heartache you describe. If we can send men to the moon, we should be able to lick pediatric cancers.

  3. Thank you Deborah. I appreciate you reading this piece and your kind words

  4. Thank you very much Dalia

  5. Robin says:

    Thank you, Jonathan, for your your fight to right the far too many wrongs surrounding the research, funding and general information put out there regarding pediatric cancer, and helping to get the word out about the dire truth.

  6. Maggie Crump says:

    I am so sorry for your loss and appreciate your work on childhood cancer awareness. On October 15, 2012 we were grandparents of 8 and on October 16, 2012 we became grandparents to a child with cancer. It has been an very tough 11 months but as of right now he is in remission, but Ewing’s will always be with us.

  7. Ashleigh Kussman says:

    Thanks for fighting with us, Jon. I am fighting with you too. We need to keep spreading awareness until change is made. We need to remove the rose-colored glasses which you and I know hide the truth about current “therapies” and effects on survival.

    Thanks again–sincerely–from a long-term survivor with long-term side effects from these unchanged toxic “treatments.”

  8. I am in tears reading this. I am one of those parents who also believed the lie of childhood cancer before our 14 y/o was diagnosed with AML, Jan. 15th, 2012. We have been medically displaced 21 months now as she lives with a VAD while waiting for a heart transplant. Cancer free but no where near out of the woods. We know personally the lie of the 80% survival rate. Bronwyn is a survivor. If she doesn’t survive the transplant she will still be counted as a survivor. Her death would be a cardiac one even though she had no cardiac issues before cancer and her cardiomyopathy is directly a result of cancer treatment.

    Keep speaking the truth, Jonathan. We need your voice! Thank-you.

  9. Jackie says:

    Jonathan,

    Thanks for such a great article. My son is currently battling cancer, the same type of cancer that I had 28 years ago. In fact there using the same drugs on him that I was treated with. But his cancer is different and requires more chemo’s then what I required. I agree there needs to be more therapies so these children have a chance at life!

    Jackie

  10. Lori Fields says:

    Thank you for standing for those who can’t!! My brother is now 40 and is starting those secondary “cures”! It is heartbreaking to see loved ones live with pain. With people like you hopefully we all will see some change!! Keep up the great fight!

  11. Thank you for writing this. We founded an endowment shortly before our daughter passed away from one of those cancers for which there is no real cure, as yet: adrenocortical carcinoma. The treatments were horrendously toxic and did not cure her; the 18-hour surgery to remove her primary tumor did not cure her. The Katie Gerstenberger Endowment supports the work of Dr. Michael Jensen of the Ben Towne Center for Childhood Cancer Research in Seattle. They have a clinical trial of T-Cell therapy underway, and the first patient enrolled (with twice-relapsed leukemia) went into in remission after 9 days (and continues to be in remission). We have real hope for this new way of treating cancer! You can learn more on my website, or at http://www.bentownefoundation.org. Thanks again.

  12. christine vacheresse says:

    How sad,but oh how true.my son was diagnosed with medulablastoma,brain tumor.at the age of 5.his treatment left him physically
    ,and mentally impaired.even so he was a truly beautiful human being who loved life and everyone he met.with all his problems we felt blessed that he was cured of cancer.then 13 years later,at the age of 18,the same cancer came back.we were told there was nothing to be done,since the original treatment did not work,and in all that time,no new advances had been made.

  13. Margie Lindsey says:

    Thank you for advocating for our kids and helping bring this horrible injustice to light. My son is going through many things as you spoke of. He was diagnosed with Leukemia (AML) at the age of 16. He suffered a relapse after 6 months of chemo, went through radiation, more chemo and a bone marrow transplant. Now at the age of 20 he is completely bedridden, has avascular necrosis in all joints, has had a hip replacement, is diabetic…..the list goes on.Keep fighting for my son as well as thousands of other kids who as you say are labeled “cured.”

  14. Donna Tine says:

    Always thankful that this community has a voice like Jonathan’s with the reach that he’s built, shouting the messages that need to be heard. Keep up the fight Jonathan –

  15. Pingback: Social Competence in Childhood Cancer Patients | Cancer Knowledge Network

  16. Grace says:

    How can we help, who should we contact? I live in AZ, I steadfastly agree treatment for pediatric cancer needs a voice, a movement. I want what we see in pink to also be done for children. We should be screaming this from the mountain tops. I do not have a child with cancer, but have known too many families. I want to be a voice of change on this, where can I get started!

    • Grace, one of the places that is doing fabulous work is the Ben Towne Center for Childhood Cancer Research at Seattle Children’s Hospital’s Research Institute. They are using T-cells (from the patient’s own immune system) to help wipe out cancer. The first patient in the first clinical trial had 2x relapsed leukemia and went into remission in 9 days! They are now treating patient #2. You can read all about it here: http://www.seattlechildrens.org/research/childhood-cancer/
      Our daughter Katie died from childhood cancer, and because of Katie, we are supporting the Ben Towne Center’s work.

  17. michelle says:

    thank you for your article…it has helped me to clarify some of what i am processing after losing my daughter to AML in May/13 at 15 years of age. we are coping somehow but your words have helped me to understand part of what i’m feeling is…betrayed. although i know she had good care at the hospital, i don’t feel they were honest with us – but maybe that’s how they keep us fighting and filled with hope for the fight? But the fight includes causing pain and suffering for our children – and us as parents having to watch them being tortured…yes, we want them with us! But at what cost…? truly horrific. We are building orphanages in her honor.

    • Jonathan Agin says:

      Michelle: thank you for your comment, and so sorry about your daughter. I’m glad that you found this piece helpful. Building orphanages is an amazing tribute.

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