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The Oncologist, the Patient and CKN — Sharing Knowledge

World Cancer Day 2017: A few words from Jonathan Agin

jonathanaginSMALLby Jonathan Agin, Childhood Cancer Advocate

 

Someone once said that hope springs eternal.  In the context of cancer around the world, as 2016 came to a close and 2017 dawned, a palpable sense of hope continued to take root despite the backdrop of a cautious and uncertain landscape.  Peeling back the layers of hope, there are a number of dynamic factors that have fueled this optimism.  A greater understanding of the underlying genetic and molecular targets and drivers of cancer continues to expand almost daily.  Global efforts to unlock new targets and treatments, precision guided therapies, precision medicine, investigation into the use of drugs widely proliferated in other diseases, cheaper access to genetic testing, and on and on, all form the foundation of hope.  Hope is not created through alternative facts; rather it is nourished by steadfast effort.  For those of us in the cancer advocacy community, effort is never lacking.

 

For children with cancer across the globe, it is never a linear equation unfortunately.  Hope remains in a constant flux and ground is gained inch by painful inch.  Globally, children with cancer continue to suffer from the lack of primary investment into the development and availability of new or less toxic therapies.  There is still a major hesitancy to include children in early stage clinical trials or combination therapies for fear of possible negative effects.  This hesitancy, fostered on the basis of “do no harm” consistently ensures that children with no options are left with no options rather than the ability to have clinical access to promising drugs.  In the United States, federal research investment, for childhood cancer specific research, remains low.  Many forms of childhood cancer, including DIPG, the same brain tumor that took my own daughter’s life, continue to see zero improvement in overall survival statistics.  In many countries, the most treatable forms of childhood cancer continue to have dismal cure rates due to the lack of pediatric-specific care or availability of drugs.  In 2012, it was estimated that greater than 80% of children with cancer in Africa die as a result of not having any access to adequate treatments.  (https://www.ncbi.nlm.nih.gov/pubmed/22475119).  Today, the numbers are not much better.

 

Uncertainty in healthcare policy as a result of the inauguration of a new administration is causing significant anxiety.  Projects such as the Cancer Moonshot and the Precision Medicine Initiative feel as though they are adrift in the murky waters of the North Atlantic waiting at every turn to encounter an iceberg leading them to the same fate as the Titanic.  To date, several days into the new administration, there is still no clear statement as to the status of these initiatives.  Judging from the first few days, there is reason to have a sense of dark foreboding.  Parents who have a child in treatment or one who survived the diagnosis now worry about the ability to obtain insurance coverage for them.

 

Reading this far, you may be wondering what is my point.  It is a mixed bag at this juncture.  As we celebrate, or more appropriately mark World Cancer Day on February 4, 2017, my message is simple; where there is hope there must remain action and continued advocacy.  Allowing the momentum created by the efforts of the scientific and advocacy communities to slow or sink needlessly is not an option.  At the end of the day, despite the best advances, we as a community must remain vigilant and steadfast.  Cancer is not a regional disease.  It exists around the four corners of the globe and back again.  We mark this day with a simple common goal: universal survivability for all forms of cancer.  We simply need to ensure that the road map to that destination remains solidly pointed forward and not dramatically forced backwards. 

 


 

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: www.jonathanagin.com 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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