Written by Junior Advisory Board Member and OsteoWarrior, Camille Brady
Thursday, September 18th: Childhood Cancer Caucus Summit
With a suitcase and a smile, I arrived at the nation’s capital with my fellow Junior Advisory Board (JAB) members. Stuffed into Ann’s hotel room, we devoured some D.C. pizza (I’d give it a 9.5/10) and talked about the days ahead. Thursday was going to be a big day for MIB Agents.
Looking around the room at the friends I just met in person for the first time, I couldn’t believe how lucky I was to be surrounded by such incredibly hilarious people who also understood the complete and utter agony that comes with the MAP regimen. It was a room filled with dark humor (mostly from playing Cards Against Humanity), but also overwhelming support and excitement for this year’s Climb the Hill Day.
We woke up early Thursday morning and fueled up for the day with the infamous DuPont Circle Hotel breakfast sandwiches before heading to the House. Our OsteoWarrior and JAB member, Allisen Rambur, was scheduled to speak at the 16th Annual Childhood Cancer Caucus Summit hosted by Representatives Michael McCaul and Ami Bera. Spoiler alert – she crushed it!
We filed into the House Committee on Appropriations room and took our seats, not yet knowing what incredible stories we’d hear over the next three hours. Rep. McCaul, the champion and primary sponsor of the Give Kids a Chance Act [H.R. 1262], gave opening remarks that electrified the crowd and provided a sense of hope that this time, our bill would pass.
At the end of the summit, we had the honor of meeting Rep. McCaul and speaking with him directly about why this bill is so special to us. The Gives Kids a Chance Act (GKAC) does two important things: (1) it incentivizes drug development for pediatric cancers; and (2) it closes existing gaps in drug research for children with rare diseases. It does so by:
1. Authorizing the FDA to direct pharmaceutical companies to study novel (new) combination drug therapies for pediatric cancer patients,
2. Amending §505B of the Federal Food, Drug, & Cosmetic Act, and more specifically, the RACE for Children Act, to include an additional option for the FDA when approving a novel cancer drug for adults; for example, the FDA could utilize the GKAC Act to require a pediatric investigation of a new single novel cancer drug in combination with another active ingredient,
3. Reinstating the expired FDA Rare Pediatric Disease Priority Review Voucher (PRV) program, which allows pharmaceutical companies to expedite FDA review of more profitable drugs in return for developing treatments for rare pediatric diseases.
Standard pediatric chemotherapy regimens have remained virtually unchanged for more than 50 years. Let that sink in. Every year, nearly 16,000 children in the U.S. are diagnosed with cancer and although these children represent up to half of all people living with rare diseases, they have far fewer novel treatment options than adults. While thousands of combination drug therapies are being developed for adult cancer patients, children typically only have access to clinical trials that test one new drug at a time – and these trials are only accessible to pediatric patients after their standard chemo regimen fails, wasting valuable time to tackle ever-mutating cancer cells. What’s interesting? It’s often targeted drug combination therapies that pose the highest success rate for patients and maximize the chance of cure. Passing the Gives Kids a Chance Act could completely transform how pediatric cancer is treated, saving lives and saving families.
Last December, the Give Kids a Chance Act passed the House unanimously, but didn’t survive the Senate. So, in true “why not go straight to the problem” fashion, Ann took us to the Senate side immediately after the summit. There, we met with the offices of Senator Husted and Senator Cassidy, both of whom had become newly converted fans of MIB Agents.
At Senator Husted’s office, Ann put me on the spot and asked me to pitch the bill. Somehow, I recited everything I knew beautifully and even surprised myself when my own tears started to well up as I shared my story. Being that vulnerable in a place like the Capitol isn’t easy, yet we all did it, time and time again, with every staffer we met.
You could see the raw reaction on every staffer’s face, each uncertain with what to say or how to respond. They never said no to our request for co-sponsorship, but they never quite said yes either. That’s when I started wondering about the legislative process and whether constituent voices truly matter. How could an issue that seems so innately bipartisan ever be contested? Pediatric cancer research is just asking for a little more attention! But honestly, I left proud. We told our stories, made our case, and made a few people a little squeamish. Mission accomplished. After a long day of advocating, we headed over to the Carter’s house for an amazing dinner, filled with giggles and lots and LOTS of tacos. Thank you to Luke and his wonderful family for hosting us!
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Friday, September 19th: Climb the Hill Day
At last, it was Climb the Hill Day. With more breakfast sandwiches in tow, we returned to the Capitol to meet Nancy Goodman, founder of Kids v. Cancer. Alongside Jennifer Flynn, Nancy brought together more than 150 children and young adults to share their cancer stories with Congress. The Junior Advisory Board was asked to lead small groups of advocates, some as young as five, through meetings with legislators where we pitched the bill and had every advocate explain their connection to pediatric cancer. The coolest part? We directed these meetings entirely on our own, no guidance from our adult leaders.
I co-led a group of six remarkable advocates with my fellow youth leader, Colby. Over the course of the day, we met with staffers from four congressional offices, sharing stories that were raw, hopeful, and impossible to forget. By the end of it, the halls of Congress felt a little different, and so did we. The Junior Advisory Board left the Capitol feeling proud and accomplished.
Childhood cancer awareness shouldn’t end just because it’s October. As MIB Agents, we need to keep the pressure going and ensure that this legislation gets passed as soon as possible because cancer doesn’t wait for Congress. Since leaving the Capitol, the Give Kids a Chance Act has secured 14 additional co-sponsorships. With a grand total of 298, we are now well-positioned for another unanimous vote in the House!
Want to help? Check out this link to see if your representative is a co-sponsor. If they aren’t, give them a call and share your story. Our fight isn’t over yet, and every conversation brings us closer to victory.
About the Blogger
Camille Brady, 22, is an OsteoWarrior from New Jersey. She was first diagnosed with Ewing sarcoma at 12 years old in the middle of sixth grade. With the tumor attacking her left hip, she was treated with a standard chemotherapy and radiation protocol. Camille remained in remission for five years before she was diagnosed with radiation-induced Osteosarcoma in the same location during her senior year of high school. In addition to undergoing chemotherapy for a second time, Camille underwent an extremely invasive surgery where she received a total hip replacement and pelvic reconstruction. This surgery impacts her left leg’s motor function, so she uses a crutch to walk and wears a foot brace to mediate her foot drop. Even though she’s not sure she’ll ever ditch the crutch, she has a lot to be proud of. She loves traveling the world, going to concerts, and walking countless blocks through New York City with her best friends. When she’s not on her feet, Camille works as a program coordinator in the policy division at the Nuclear Energy Institute in Washington, D.C. She’s also a recent public policy graduate of Cornell University. Camille looks forward to continuing her advocacy with MIB Agents and giving back to the incredible community that has supported her post-treatment journey.
