Fixing the Faults

FixingFaults_edited-1This summer I wrote a raw piece entitled “The Fault in Our Systems”. Our family’s efforts to get Nathalie access to immunotherapy treatment (available to adults) seemed to be going nowhere. The inequities were everywhere and the playing field was tilted against us. In high school on the Big Island, I dreaded playing travel soccer games at Hilo High. The soccer field was on a laughable slope. Thank goodness for halftime field switches. Nathalie is still playing up hill – there is no other playing pitch with ASPS, but gaining access to a new therapy is significant.

facebook-pictureLast weekend I was able to take a look under the hood at some of those faulty systems in the world of childhood cancer. Our family traveled to Washington D.C. with the express intent of leveling playing fields- one determined step at a time. Vicki took the redeye flight ahead of us, landed in DC and lasered to the Capitol for the “Hill Day for Medical Research”. She was able to meet with a number of lawmakers, urging support of policies to increase research funding, incentivize pediatric cancer drug development, and remove barriers to access.

The girls and I arrived in the afternoon, quickly changed into DC level attire and joined Vicki at a “Golden Toast: Reception for Congressmen McCaul (R) and Van Hollen (D) Co-Chairs of the Childhood Cancer Caucus“ It was the movers and shakers of pediatric cancer NathanReceptadvocacy. A certain pharmaceutical pediatric oncologist was there, eager to meet Nathalie. Our first introduction had been long ago when he had been on the other side of the phone letting our oncologist know that the the immunotherapy drug would not be available at this time. Through many phone calls and communications we gained a mutual respect, and even as I wished the answer for Nathalie would change, I supported his efforts to bring treatments for all pediatric patients sooner. Today we were both in DC as partners with a similar goal.

He announced that his company had enacted some wide policy changes in the default age limit for their future clinical trials. Unless specifically necessary, twelve would be the new age limit on the “adult” trials. The future pediatric trial of PDL1 will include all tumor types – also a nod to rare cancers like Nathalie’s.

At one point a few months back, Nathalie remarked that it can be lonely in front, pushing for something new, something you believe is right. I told her, “It always is.” I am thankful NathanAutoriumwe get to see this door widen for others.

So many other scenes float past – sitting as a family in the richly appointed congressional auditorium listening to the head of NIH, MD Anderson, Johnson and Johnson give their take on the challenges of pediatric cancer, compassionate use, immunotherapies, and science advancing faster than access. So much had been part of our story – I bit my tongue on the Q & A’s till I couldn’t anymore. The CEO of St. Baldrick’s turned around to thank Nathalie for the trail she had blazed and the reporter who took her story national was typing away in the row behind. The seats were filled with the names of many we’d met from afar on Nathalie’s journey.

Later that day I learned of the triplicate security measures involved in attending a meeting at the White House. The briefing/discussion for Pediatric Cancer Advocates was held in the Indian Treaty Room. I wasn’t in the mood to make treaties (in fact if the suit wasn’t required, I’d have preferred one of StillBrave.org’s “Keep Calm, My A$$! Cure Childhood Cancer” T-shirts) but I sat quietly down in the front row a few feet from the government officials best poised to advance childhood cancer efforts.

RobVarmusDr. Harold Varmus, director of the National Cancer Institute shared how budget instability was turning away young researchers from pursuing funding. A new pediatric MATCH Trial was set to begin, using genetic analysis of non-responding tumors to match them with existing market and developmental medicines – which hopefully pharma would make available as they have with the adult version of the MATCH trial. He was of course pressed on the 4% of the total cancer budget devoted to pediatric cancers. I took some solace in the words of Dr. Gregory Reaman in charge of the FDA’s oncology drug development. He is a former chairman of the Children’s Oncology Group and is very well-placed to question pointless barriers. I overheard the phrase “It’s time to stop “protecting” children from research, and use research to protect them.” What was historic about this meeting was that the administration had made available just about every government official connected to pediatric cancer and had given a forum for the diverse collection of pediatric cancer advocates to have a conversation. There is so much to be done. The many drums are starting to find the same beat.

IMG_4700There were lighter scenes as well, accidentally taking the “Senators Only” elevator, enjoying the “schmoozing” food at receptions, taking advantage of the Smithsonians sandwiched between our business at the Capitol and White House, screening the animated film addressing children’s cancer “Henry and Me” and chatting with the directors, bumping into one of Nathalie’s former NIH doctors who demanded a pic for the team there rooting Traller_HenryAndMefor her, debating the merits of “half smokes” versus normal hot dogs, and participating in the most scenic fundraising walk ever (“so head down to the capitol, turn around The Mall and then circle around the Washington Monument”). We took cabs among the alphabet and number streets and were inspired by the families and foundations that have been in this advocacy effort for years watching it slowly grow. Humbled and inspired was the theme.

Childhood cancer is the number one disease killer of children. It’s time to stop calling it rare. I used to think the lack of progress in pediatric cancers (other than blood cancers) was due to the tremendous complexity of the task. Now after I’ve looked under the hood, I know that it is really no surprise based on the paltry stream of resources. Imagine large NASCAR vehicles representing the most prevalent adult cancers – their hoods are plastered with corporate sponsors such as Merck and Bristol Myers Squibb. Now imagine NathanCar_edited-1a small car with only two small decals, that of the National Cancer Institute and Children’s Oncology Group. Call me crazy but I feel if those big companies want to keep racing to the profit line on the adult cancers, perhaps they can all agree to a small share of sponsorship of the pediatric cancer car that represents future dreams. You won’t find a company that doesn’t profess to be patient first, let’s stop defining that patient by age. Let’s make sure our government removes the speed bumps for the companies with the character and courage to join in. I saw engagement by Genentech, GlaxoSmithKline and Johnson and Johnson this weekend – Know someone with a company that was missing? Encourage them to get in the game. I can personally guarantee that the Traller family will keep pushing up hill. Sometimes it’s the difficult things are the most worth doing.

Author: Nathan Traller

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NathalieVideo_edited-1The Fault in Our Systems bounceballauthor

This entry was posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized and tagged , , , , , , , , , , , , , , , , , , , , , , , , , , . Bookmark the permalink.

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