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The Valley of Echoes: Bridging the Communication Gap Between Patients, Patient Advocates, Researchers and Clinicians

jonathanaginSMALLby Jonathan Agin, CKN Section Editor


Recently I had the honor of speaking at the FACTOR Osteosarcoma Conference in Miami, FL, put on by the nonprofit MIB Agents.  This was the first osteosarcoma conference of its type.  For two days, sitting in an ornate and impressively handcrafted room at the Biltmore Hotel in Coral Gables, FL, 150+ researchers, clinicians, parents, patients and advocates breathed in the same air.  Throughout the conference, there were medical presentations involving surgical intervention, limb salvage, drug discovery, drug development, trial design, genetics, patient advocacy and much more.  The agenda was amazingly and stressfully jam-packed.  The purpose of the two day meeting was to bring stakeholders together in one room and discuss priorities for the osteosarcoma community.  The talk I gave was affectionately titled, “Guilty as Charged: Opportunities from Miami and Beyond.”  I was guilty of providing Ann Graham, from MIB Agents, and Theresa Beech, an osteosarcoma parent herself and a childhood cancer community outlier (think Malcolm Gladwell’s book Outliers), with the thought that if they wanted to see change for the osteosarcoma community, then they should think about having a conference.  And thus, welcome to Miami circa February 2017.


I have always known that at some level a communication gap exists between parents, caregivers and clinicians.  But what happened within the first two hours of the conference highlighted that there is not simply a gap, but in many instances there is a valley.  During the course of a presentation on the topic of genetic analysis and sequencing of tumors, including upon recurrence and metastases, a conversation began to grow with a low rumble in the audience.  Specifically, there was a debate about the utility of having tissue sequenced from recurrent and metastatic growth.  The question arose as to whether there was any benefit to the specific child or rather if the biopsy done at recurrence or metastases was simply for research purposes.  Inevitably, the word “ethics” was thrown into the discussion and the torch illuminating the valley was lit.  Quickly, the discussion turned to the issue of money, insurance reimbursement for genetic sequencing, and of course the lack thereof.  Given the poor prognosis of children with recurrent osteosarcoma, concern was raised over the cost associated with, and potential risks of obtaining tissue for, sequencing.  One researcher reached out his hand for the microphone as he stood from his seat and stated emphatically that, “[p]arents won’t pay for genetic sequencing and analysis if it will not benefit their own child and they cannot get it covered.”  If ever there were a more perfect example of this valley, this discussion would be a textbook case.


The rising torrent that swiftly developed was generated from a chorus of parents who have watched children struggle and die.  The level of frustration over this lack of communication was palpable.  Why was the opinion held by some of the clinicians and researchers that parents would not want to have their child’s tumor analyzed at all costs?  Where did this belief originate?  This obvious chasm highlights a deep issue between the separation of parent and clinician/researcher.


Personally, I believe this is a greater issue and should cause concern on several levels.  I frequently see this in the DIPG community.  The diagnosis of DIPG is almost always universally fatal with the general prognosis of 9-12 months from the time of diagnosis to death.  Since its classification well over 40 years ago, much has been discovered about some of the genetic drivers of DIPG and the difficulties of treating the disease.  Well over 250 clinical trials have existed enrolling hundreds of children with very little efficacy.  Single drug phase I study after phase I study have been available for children with DIPG for many years.  The numbers have not changed and most children die within nine to twelve months.  Parents are desperate to break this cycle and want clinicians to move beyond the cautions and hesitancies that ensure its continuation.  More effective therapeutic delivery modalities exist.  The ability to create multimodal combinatorial therapy protocols involving cycling combinations of drugs is a reality that should be explored for each child upon diagnosis.  Providing a child with DIPG radiation therapy and then sending them home to “enjoy” their remaining time is not an acceptable option but continues to be sold.


Of course none of us wants to purposely harm our children.  And there is of course the physician’s motto of “first do no harm.”  Unfortunately, in many childhood cancers, “do no harm” equates to “let them die.”  There is an obvious balance.  Cancer treatment by its nature in many instances causes harm.  For children with the most common form of cancer, acute lymphocytic leukemia (ALL), the long and arduous treatment protocol by its very nature is harmful.  Statistically, children with ALL have an 85% chance of surviving five years from diagnosis.  Some estimates reach over 90%.  Few arguments exist to demonstrate that the drugs used for the treatment of children with ALL are not harmful.  In fact, the drug cocktail used is highly toxic and causes devastating lifelong side effects.


Every parent who hears the words “your child has cancer” seeks one outcome: survival.  We all begin the journey of having a child with cancer under the guise that our child’s clinical team is focused upon the same end game.  I believe that this statement is generally true unless the clinical belief is one resigned to almost certain death.  “There is nothing more that we can offer.”  Along the road to the hopeful destination certain gaps appear and ultimately, the valley deepens.  Communication gaps that arise as a result of different risk tolerance levels and interests can create complete clinical paralysis.  Clinical paralysis in terms of time can translate to the loss of ability to try a different treatment or seek another opinion.  Or, in the case of children with recurrent and metastatic osteosarcoma, the failure of a parent to act in obtaining genetic material for rapid sequencing in the hopes that new drug targets are identified.


The point is that if we continue to speak from different sides of the valley, parents of children with cancer will continue to hear the echoes of their desperation returned without answer.  Long held beliefs by clinicians as to what parents are and are not willing to do for their child must be eliminated in order to move beyond the barriers to create better outcomes.  I have often heard it voiced that parents, due to extreme stress, are unable to truly understand the ramifications of treatment decisions when signing informed consent documents.  Institutional barriers may be created that fill the role of gatekeeper dissuading parents from seeking aggressive options for treatment.  Communications must be bilateral in nature and those with a role not only need to hear each other, but more importantly listen.  Nothing about childhood cancer is comfortable or happy like the oft-utilized and misleading images utilized in television commercials depicting smiling bald-headed kids.  In order to advance beyond stagnating survival numbers, and in the case of DIPG the nonexistent survival rates, the combined understanding of our risk and harm profiles must be redefined and collectively accepted, even if not palatable to the clinical or regulatory community.


In the end, the discussion at the FACTOR Conference regarding whether parents would present their child for a biopsy, and if necessary pay out of pocket for sequencing despite the obvious poor prognosis, highlights the widening divide of the valley.  Parents are willing to do virtually anything in the hopes of saving their children.  Clinicians and researchers play a key role in guiding parents away from false hope and the widely existing snake oil.  Guiding parents does not equate to inserting false or limited beliefs.  It is achieved through open communication and the ability to appreciate the different vistas of the valley.  Once in a while, someone on one of the opposite sides needs to venture into the valley to cross to the other side.  One of the greatest gifts I ever received as a result of my daughter’s diagnosis was perspective.  This perspective provided me a seat on one side of the valley complete with dark and foreboding vantage points.  Following her death, I have been fortunate enough to venture through this valley to the other side.  The echoes from the absence of communication, or understanding of what was being communicated, have dissipated some for me. Unfortunately the valley continues to exist, despite some of the strides made by the advocacy community, and thus parents of children diagnosed with cancer face death because sometimes we simply do not know what we do not know, or allow fear to decide our fate.  Even a slight willingness to enter into this valley by all involved can sometimes reap significant benefits.  The first step is the biggest, but if everyone is willing to meet in the valley, even if it takes a conference to get us to walk there, it is a step in the right direction.




Jonathan Eric Agin, JD, is the Executive Director for the Max Cure Foundation and the Institutional Official, Development Liaison for the Children’s Cancer Therapy Development Institute, a non-profit childhood cancer research biotech located in Beaverton, OR.  He is also the Cancer Knowledge Network (Canadian Oncology Journal) Childhood Cancer Awareness and Advocacy Section Co-Editor and frequent contributor to the Huffington Post.  Jonathan is an attorney by training and a former trial lawyer from Washington, DC.  He is one of the most recognized names in the childhood cancer community.  He has testified before the United States Congress on issues of identity theft impacting the childhood cancer community, which ultimately led to the introduction of bipartisan legislation named after his daughter Alexis (HR 2720, The Alexis Agin Identity Theft Protection Act of 2013).  This legislation was later enacted into law as part of the overall budget deal of 2013.  Jonathan’s legislative advocacy has proven effective in the passage of several bills in a climate of congressional stagnation and he continues to work closely with members of the community and beyond on legislative initiatives impacting the rare disease community.  He has provided public comment before the FDA pedODAC Committee on the topic of biopsy in children with DIPG (an inoperable and almost universally fatal pediatric brain tumor).  Jonathan became involved in the childhood cancer community following the diagnosis of his daughter Alexis at the age of two with DIPG  in April 2008.  Alexis battled heroically for thirty-three months until January 14, 2011.  Jonathan frequently interacts with members of Congress and their staff, the White House, as well as various regulatory agencies and other cancer organizations in an effort to improve the plight of children with cancer.  He is an original founding steering council member of the DIPG Collaborative.  Jonathan resides in Falls Church, Virginia and has four children, Alexis (1-31-06 to 1-14-11), Gabriel age 7, Trevor age 4 and Kylie 2 years.  Jonathan maintains his own website for his advocacy activities: and can be followed on Twitter @jonathanagin.  In his spare time he also competes in endurance events like running marathons and triathlons.



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