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4th Annual Childhood Cancer Summit

Houston Chronicle: Michael McCaul, Brianna Commerford ‘create hope’ for pediatric cancer patients

Usually, when Brianna Commerford misses school, her mom has to write a note to her principal that says ‘doctor’s appointment’ or ‘sick.’ This one said ‘speaking on Capitol Hill.’ “When I was nine years old, I was diagnosed with stage four Hodgkins’ Lymphoma,” the 14-year-old told the third annual Childhood Cancer Summit Thursday. When Commerford was diagnosed in 2007, she was taken out of school for a year of chemotherapy treatments. Instead of participating in cheerleading or soccer, she had nine surgeries, as well as blood fusions, infusions, and transfusions. “It wasn’t the cancer that almost killed me,” she said. “It was the treatment.” Thursday’s summit, led by Rep. Michael McCaul, R-Austin, celebrated the passing of the Creating Hope Act. Under the law, companies who develop better treatments for childhood cancers will get vouchers to speed the drug approval process. “Pediatric cancer is the number one cause of disease related mortality [among U.S. children],” said Dr. Paul Harker-Murray, a pediatric oncologist at Children’s Medical Center in Dallas. “There are about 12,500 new cases per year.” Harker-Murray said although about 78 percent of children with cancer are cured, there are late and long-term effects with the therapies used to treat them. About three-fifths of cancer survivors develop life-threatening diseases related to the treatment they received as children. Unfortunately, developing treatments for children produces a low return on investment, according to Dr. Danong Chen, the CEO of MetronomX. Chen said that a small patient population limits the number of patients who can be enrolled in clinical trials, making research for children’s treatments less profitable. The drug development industry is driven by more common drugs, usually for adults. “If you are a profit-driven pharmaceutical company, your interest in treating pediatric cancer is very, very low,” agreed Harker-Murray. “Just financially it doesn’t seem like it would be worth it.” The voucher system makes it possible for companies to see quicker returns. MetronomX is a biotechnology company based in Houston that is developing treatment for neuroblastoma, a tumor that usually occurs in children five years old or younger. Currently, the survival rate for children with stage 4 neuroblastoma is approximately 40 to 60 percent, even with aggressive treatment such as surgery or radiation therapy. Chen, who also spoke at the summit Thursday, called McCaul last year to show support for the Creating Hope Act while he was lobbying it in Congress. “We believe this amendment, providing a voucher, is a powerful incentive for pediatric oncology,” she said, “especially for a small company like ours.” McCaul said the act will create competition between drug companies to find treatments for “orphan diseases,” which have such a small population of patients that there is little market incentive. Last year, McCaul brought Commerford to Washington to speak to his colleagues about the Creating Hope Act. With her help, he was able to get 172 cosponsors for the bill, including Rep. Ron Paul, the Lake Jackson Republican who ran for president this year. Commerford, who has been cancer-free for four years, visits cancer patients and tries to be a role model to let them know there is hope. She said when she heard about the bill, she was determined to help make it a reality. “I even got Nancy Pelosi to sign, which apparently was huge,” she said.

Caucus Hosts Third Annual Childhood Cancer Summit

Leaders from NCI and FDA address the third annual Childhood Cancer Summit to discuss federal efforts to combat childhood cancers.

Childhood Cancer Summit 2012

Rep. McCaul Speaks at the 2012 Childhood Cancer Summit

Rep. Van Hollen Speaks at the 2012 Childhood Cancer Summit

President Obama Proclaims September 2012 as National Childhood Cancer Awareness Month

This month, we pay tribute to the families, friends, professionals, and communities who lend their strength to children fighting pediatric cancer.

ABC News: Law Offers Drug Companies Vouchers in Exchange for New Cancer Drugs for Kids

President Obama signed a bill today that will provide incentives to drug companies to research and develop drugs for rare diseases. The Creating Hope Act grants pharmaceutical companies that create drugs for diseases like childhood cancers a voucher giving speedier review of any other drug they submit for approval. The Oval Office signature was a hard-fought victory for children like Mollie Ward, 11, who survived a rare form of pancreatic cancer thanks to an experimental drug, and for other families who have fought childhood cancers. Nancy Goodman, founder of Kids v. Cancer, which is devoted to pediatric cancer research, lost her son Jacob Froman, 10, to a rare form of brain cancer nearly four years ago. He’d been diagnosed at the age of 8. She was instrumental in getting the bill passed. She and others said that drug companies had little financial incentive to develop new treatments because childhood cancers are so rare. “The reason I started working on the Creating Hope Act was that I found very early on that there are just very few drugs to treat kids with cancer,” she told ABC News. “We created a big, fat carrot. The carrot is a voucher.” While 50 new drugs for adult cancer have been released in the last 20 years, just one expressly for pediatric cancer has gotten initial Food and Drug Administration approval, doctors say. The track record for drugs for other pediatric rare diseases is even worse. “The reason that companies don’t make pediatric drugs is all market force driven,” said Dr. Henry Friedman, an neuro-oncologist at Duke University Medical Center. “Companies have an obligation to their shareholders to make money. The pediatric diseases by and large are such low numbers. … The incentive to make pediatric drugs is very small.” Goodman said the measure was smart legislation and an attempt to ensure that more families don’t experience what she has. “I don’t think the American public realizes how devastating pediatric cancer is,” she said. “It’s far worse than any other adult cancer. There’s something unfair and unjust about the death of a child.”

ABC News: Law Offers Drug Companies Vouchers in Exchange for New Cancer Drugs for Kids

President Obama signed a bill today that will provide incentives to drug companies to research and develop drugs for rare diseases. The Creating Hope Act grants pharmaceutical companies that create drugs for diseases like childhood cancers a voucher giving speedier review of any other drug they submit for approval. The Oval Office signature was a hard-fought victory for children like Mollie Ward, 11, who survived a rare form of pancreatic cancer thanks to an experimental drug, and for other families who have fought childhood cancers. Nancy Goodman, founder of Kids v. Cancer, which is devoted to pediatric cancer research, lost her son Jacob Froman, 10, to a rare form of brain cancer nearly four years ago. He’d been diagnosed at the age of 8. She was instrumental in getting the bill passed. She and others said that drug companies had little financial incentive to develop new treatments because childhood cancers are so rare. “The reason I started working on the Creating Hope Act was that I found very early on that there are just very few drugs to treat kids with cancer,” she told ABC News. “We created a big, fat carrot. The carrot is a voucher.” While 50 new drugs for adult cancer have been released in the last 20 years, just one expressly for pediatric cancer has gotten initial Food and Drug Administration approval, doctors say. The track record for drugs for other pediatric rare diseases is even worse. “The reason that companies don’t make pediatric drugs is all market force driven,” said Dr. Henry Friedman, an neuro-oncologist at Duke University Medical Center. “Companies have an obligation to their shareholders to make money. The pediatric diseases by and large are such low numbers. … The incentive to make pediatric drugs is very small.” Goodman said the measure was smart legislation and an attempt to ensure that more families don’t experience what she has. “I don’t think the American public realizes how devastating pediatric cancer is,” she said. “It’s far worse than any other adult cancer. There’s something unfair and unjust about the death of a child.”

'Creating Hope Act' Now Law

Incentivizes Drug Companies to Develop New Treatments for Children with Rare Pediatric Diseases