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WILLAMINA CLAYTON

A local youth recently joined in efforts lobbying the U.S. Congress on behalf of Kids v Cancer.

Willamina Clayton, a local cancer survivor, joined with advocacy efforts over the summer.

Clayton said that a representative of the Kids v Cancer organization contacted her mom to ask if Clayton was interested in helping with the advocacy efforts.

She said she joined in the advocacy meetings this summer, speaking with congressional staffers via Zoom.

Recently, Clayton took part in Climb the Hill Day.

Usually, she said, advocates would visit Capital Hill in-person, but the event was held virtually this year.

Clayton and other advocates spoke in favor of two bills Kids v Cancer are trying to get passed by congress: the Gabriella Miller Kids First Research Act 2.0 (HR 623, S. 1521) and the Give Kids a Chance Act, H. R. 5416.

“Our main goal is to get the staffers to talk to congress about sponsoring Kids v Cancer,” she said. “The whole point of sponsoring us is so that we can develop new medicines and drugs for these kids who are fighting for their lives.”

Clayton said there were generally four or five advocates to a group on the calls.

She said each advocate would share their own story, why they were there why it is important to them and then the staffers would respond.

For Clayton, advocating was a new experience.

“I’d never done any advocating before,” she said. “It felt to me really powerful. Because I’m young doesn’t mean that I can’t help or make a difference or make a change. My voice and my story matter. Sometimes it’s hard to talk about, but you have to do it because you there are other people who are suffering and you want to use what you can do to help them.”

Clayton was nervous at first, but soon came to realize it wasn’t too difficult.

“At first I was really scared, because I’d never done any advocating before,” she said. “As I got used to it, I realized it wasn’t so hard. You just told your story and it’s impactful and it’s powerful and I just hadn’t used my voice before.”

While she said she didn’t know much about the details in the bills that Kids v Cancer were advocating for, Clayton said she know they will provide funding for new research for the medicine and drugs that kids need.

Clayton said it is important for kids with cancer to have medicines and drugs developed specifically for their bodies as a problem that may children with cancer face is a lack of medicine designed specifically for them.

She said children with cancer usually get adult-sized portions of medication and this can long-lasting side effects.

“When they have adult medicine, it can leave long-lasting side-effects like what I have and it can damage their bodies,” she said.

Clayton hopes that these advocacy efforts can lead to more medicine being developed specifically with children in mind.

“If we had medicine for them, just for the kids, they probably would improve and they wouldn’t get side-effects,” she said.

Kids v Cancer provided the following description for the Gabriella Miller Kids First Research Act 2.0:

“Kids need to beat cancer. To find cures, cancer research focuses on inventing new medicines. It takes many years to discover and study a new drug. Doctors and researchers need money to conduct studies of new drugs and other treatments.

The Kids First Research Act 2.0 provides a new source of funding for the childhood cancer research and other pediatric diseases conducted by the bright scientists at the National Institutes of Health (NIH). The bill redirects hundreds of millions of dollars in penalties collected by the Securities and Exchange Commission from pharmaceutical, cosmetic, and medical device companies who break the law to the NIH. These millions of dollars of penalties are currently not used. The bill is named in honor of Gabriella Miller, a Virginia girl who was diagnosed with a brain tumor. Gabriella became an advocate for children with cancer and started the Smashing Walnuts Foundation. Gabriella was only 10 years old when she passed away in 2013. We urge Congress to swiftly pass the Kids First Research Act 2.0 to send these unused money to a lifesaving and urgent cause that helps sick kids.”

Kids v Cancer provided the following description for the Give Kids a Chance Act:

The GIVE KIDS A CHANCE ACT will authorize the FDA, at its discretion, to require companies undertaking regulatory directed pediatric cancer trials to do combination drug trials instead of single drug trials. Almost all pediatric cancer trials are conducted on kids with relapsed cancer. But, these kids can’t be cured on one-drug treatments because their cancers are so robust. They need at least two drugs. GIVE KIDS A CHANCE Act gives kids with relapsed cancer a chance to be cured on combination pediatric cancer trials.

2017: The RACE for Children Act amends the Pediatric Research Equity Act to authorize FDA to require pediatric study plans for targeted cancer investigational therapies substantially relevant to children’s cancers.

Today: The Give Kids a Chance Act (H.R. 5416) amends the RACE for Children Act to authorize FDA to require pediatric study plans not only for single cancer therapies, but also for combinations of cancer therapies. It also authorizes FDA to require preclinical studies.

To have a chance of cure, kids with cancer need clinical trials with combinations of drugs

The problem:

RACE for Children Act has profoundly accelerated pediatric cancer research by authorizing FDA to require pediatric studies of investigational adult cancer drugs. However, RACE Act only authorizes FDA to require single agent pediatric studies. Following the science would indicate pediatric clinical trials should be of combinations of drugs as well, as almost all adult cancer trials now are.

Children in single agent cancer trials rarely have any chance of cure and receive little benefit. Some single agent trials are not necessary to make a decision to undertake a combination study. Even when results of a single agent trials are necessary, there is no path forward. Companies lack incentives because pediatric markets are small. Academic pediatric oncologist cannot afford to purchase newly approved cancer therapies for off-label use on their own pediatric trials.

The solution:

Give Kids a Chance Act amends RACE for Children Act to authorize FDA to require combination pediatric study plans. Under Give Kids a Chance Act, when the requirement for a cancer pediatric study plan is triggered, FDA would have two options. First, FDA could require a pediatric study plan of the investigational drug — as under current law. Second, as an alternative, FDA could require (1) a pediatric study plan of the investigational drug in combination with an active ingredient of a drug in that sponsor’s pipeline, or (2) a pediatric study plan of the application drug in combination an active ingredient of an already approved drug. Give Kids a Chance Act would also authorize FDA to require preclinical studies as part of the pediatric study plans.

When Clayton was nine months old she was diagnosed with a rare liver cancer, hepatoblastoma.

She said the cancer spread to her liver and infected her lungs.

Clayton said she had a liver transplant, several rounds of chemotherapy and some other treatments before being involved in an experimental stem cell treatment.

Clayton said these experiences have made her understand the importance of developing new medicines and treatment options for children.

Clayton hopes to continue her advocacy efforts in the future and encourages other kids to advocate.

“I would strongly encourage other kids to advocate,” she said. “Even if their not a [cancer] survivor, they can become an ally and that’s important too. If they have a friend or family member who passed away from cancer and they want to advocate for kids. It’s important. I would encourage anyone really at any age to advocate, to use their voice, and share their story.

To learn more about Kids v Cancer’s advocacy efforts, visit www.kidsvcancer.org.

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