Hurdles Remain in Eradicating Childhood Cancers

Research!America

A total of “1.7 million Americans will receive a new cancer diagnosis this year,” announced Frederick Ryan, President, and CEO of The Washington Post, in his opening remarks for the Post’s Chasing Cancer event earlier this month. Sponsored by Tesaro and the George Washington Cancer Center, the event did not shy away from difficult topic matter.

Still, there were bright spots. “Why does cancer seem to work better in terms of novel therapeutic discoveries than other areas?” Asked new Acting FDA Commissioner Ned Sharpless. He believes it’s in part because researchers have a “good biologic understanding of the problem,” something that may be lacking when it comes to other conditions. The “use of surrogate endpoints to approve drugs in cancer has been a good thing,” Sharpless added.  Though this approach was originally used for HIV, it’s been very effective for cancer.

Sharpless also discussed the FDA’s role in ensuring a supply of new options for cancer patients, and access to treatment. The growing cost of clinical trials makes drug development expensive, Sharpless explained, saying the FDA has and will continue to be aggressive about using real-world data and other forms of evidence. As precision-based medicine grows, therapies will become more targeted—and more difficult to examine through a classic randomized controlled trial. Novel clinical trial design is going to become more and more important.

Senator Jack Reed (D-RI) took the stage next. A strong advocate for pediatric cancer research, Reed partnered last year with Senator Shelley Moore Capito (R-WV) on the Childhood Cancer Survivorship, Treatment, Access, and Research Act, which set aside dedicated funding for advancing pediatric cancer research and child-focused cancer treatments, improving childhood cancer surveillance, and providing resources for survivors and those impacted by childhood cancer. The STAR Act, which became law in July of 2018, built on Reed’s previous success in pushing for pediatric cancer research, most notably with his role as the lead Senate sponsor of the Caroline Pryce Walker Conquer Childhood Cancer Act of 2008.

With Reed’s dedication to pediatric cancer research, Post reporter Paige Cunningham asked what the Senator thought of the Administration’s plan to devote $500 million to pediatric cancer while proposing cuts to the overall budget of NIH.

“Just focusing on pediatric cancer and then cutting most everything else I think will be so disruptive that it will not advance pediatric cancer—[but] maybe inhibit it, the research,” Reed replied. Instead, the budget of the NCI — and the NIH—should be raised. Childhood cancer, Reed stressed, is something we need to try and eliminate.

The discussion then turned to ovarian cancer, as cancer survivor and founder of Cancer Grad Nora McMahon took the stage, alongside oncologist Dr. Rebecca Arend, CEO, and Co-Founder of the Sandy Rollman Ovarian Cancer Foundation Robin Cohen, and actor and Not on My Watch ambassador Scott Foley.

Nearly 85% of women diagnosed with advanced ovarian cancer will experience a recurrence in their lifetime. “Ovarian cancer is becoming more and more of a chronic disease,” explained Dr. Arend, “and you have options when you recur. Recurrence is not a death sentence.” Maintenance therapies can delay recurrence, but more than half of women eligible for maintenance therapy do not receive this care.

As the field advances, it can be hard to keep up. “Information we provide to patients needs to be in an easily understandable format,” added Cohen, “so patients can be their own advocates.” Sponsored by Tesaro, the Not on My Watch campaign aims to empower patients and their families, so they can be involved, have a voice, and raise awareness of the availability of maintenance therapies.

The final panelists, divinity professor Dr. Kate Bowler and writer Wajahat Ali, are both intimately involved in struggles against cancer. Bowler was diagnosed with incurable cancer at age 35, and Ali’s toddler daughter was diagnosed with advanced liver cancer at age two. Experimental treatments have helped Bower. She gets scans to check on her cancer every six months now, instead of every three, and speaks about the impact cancer has had on her. Used to being an expert in her field, a cancer diagnosis—and the new language and jargon that come with it—made her feel “stripped of all the things I knew how to do…eclipsed by something I couldn’t choose.”

Wrestling with cancer alongside parenthood poses its own set of intense emotional challenges. “You can’t absorb your child’s pain and suffering,” commented Ali. “You just have to be there in your inadequacy.” Bowler had a young child when she was diagnosed. “When you become a parent, your body is suddenly a home,” said Bowler, but covered in medical accouterments from various treatments, she had to find new ways to relate to her son.

Navigating relationships with well-meaning friends can also prove challenging. “Most of it comes out of these thick cultural scripts we have about positivity,” says Bowler. “None of that language is helpful. They can’t promise me anything, and I don’t need [them] to promise me anything.”

Ali agreed—still, he said, “When your baby gets cancer, it brings out the decency and kindness in people.” What has been helpful, say, Ali and Bowler, is sustained care, and a strong community. Bowler and Ali are both religious people, and their faith has also been important to them. “We’re very lucky. We have healthcare, friends, and family that love us,” said Ali. “Being grateful every day has given me a perspective that allows us to move forward. What throws me out is not knowing…how come I can’t solve this, protect my daughter.”

It’s the desire to address that question — to protect Ali’s daughter, as well as Dr. Bowler and all patients battling cancer — that makes supporting research so deeply important.

You can watch the full Chasing Cancer event here.

 

This blog post was written by Sonya Sternlieb, Research!America policy intern.

Add comment

Plain text

  • No HTML tags allowed.
  • Adds node titles to internal links found in content (as HTML "title" attribute).
  • Web page addresses and e-mail addresses turn into links automatically.
  • Lines and paragraphs break automatically.
CAPTCHA
This question is for testing whether or not you are a human visitor and to prevent automated spam submissions.
Luck shouldn't play a role in why I'm alive.
Laurie MacCaskill, a seven-year pancreatic cancer survivor