Losing daughter spurs couple to raise research money for childhood cancer


Source: Cleveland.com 

May 4, 2010 (Cleveland Heights, OH) - By the time his 10-year-old daughter, Olivia, lost her three-year battle with cancer in 2005, Steve Crowley had learned two huge lessons about the devastating disease.


One: Treatment for many childhood cancers, including Ewing sarcoma -- the type of bone cancer Olivia had diagnosed in 2002 at age 7 -- had remained virtually unchanged since the 1970s.

Two: Some drugs that had shown promise treating childhood cancers in studies were pulled off the market because they weren't effective in adults.

Not long after his daughter's death, Crowley and his wife, Cynthia Van Lenten, began raising money for pediatric cancer research. They also began traveling to Washington, D.C., and Columbus with other advocates and supporters to lobby politicians for more research money.

This year, the Cleveland Heights couple have teamed up with the national organization, CureSearch, and are co-chairs of the inaugural Cleveland CureSearch Walk on Saturday. It's the organization's first and only Ohio event.

"More children die of cancer than any other diseases combined," Crowley said. "People would like to assume that finding a cure is being taken care of with government funding and drug companies doing research.

"I just don't think people are aware of the [funding need]."

Cancer in children is rare compared with adults. Only 2 percent of all cancers in the United States occur in children. About one out of every 330 children under age 20 develops cancer, according to the American Society of Clinical Oncology.

Progress has been made, however. Overall, five-year relative survival rates for childhood cancers have improved from less than 50 percent before the 1970s to nearly 80 percent today.

A hospital that doesn't specialize in pediatric oncology "may see only several types of cancer every year," said Dr. Gregory Plautz, chairman of the department of pediatric hematology-oncology at the Cleveland Clinic.

That is why working together is so critical.

"A lot of people have given up their egos and worked collaboratively with other children's hospitals," Plautz said. "That, by itself, was a huge factor in allowing the treatment for childhood cancers to improve."

Many of the hospitals that belong to the Children's Oncology Group, or COG, which receives money from CureSearch, are absorbing the costs of their clinical research, said CureSearch President and Chief Executive John Lehr.

CureSearch has an annual budget of $58 million, most of which goes toward grants and fundraising services to COG. Most of the money is supplied by grants from the National Cancer Institute and other federal funding, with an additional $10 million to $15 million in private money and other nongovernmental support.

"We're advocating for an increase in funding from the federal government, but we know we can't rely on that," Lehr said.

In 2007, Congress passed the Conquer Childhood Cancer Act. It was supposed to authorize $150 million over five years for, among other things, research.

But for fiscal 2010 -- the first opportunity to seek money from the government -- only $4 million has been allocated: $3 million to the federal Centers for Disease Control and Prevention for a pediatric cancer registry and $1 million for patient and family education.

More money simply isn't available. That's the frustrating message that people like Crowley continue to hear.

"It's why we're doing these walks," he said. "We have to get more people on board. We have to make more people aware of the situation."

CureSearch began organizing community walks in major cities in 2006. More than two dozen walks -- double last year's number -- are planned for 2010.

All three Northeast Ohio COG members -- the Clinic, University Hospitals Rainbow Babies & Children's Hospital, and Akron Children's Hospital -- are participating in the Cleveland walk.

Research nearly nonexistent

The problem of inadequate pediatric cancer research is so pervasive that it was the central focus of a 2005 report issued by the Institute of Medicine.

"The near absence of research in pediatric cancer drug discovery threatens to halt the progress in childhood cancer treatment achieved during the past four decades," the report stated.

The money is in developing new therapies for people with breast cancer, prostate cancer and other "adult" cancers, which make up 98 percent of the market for cancer drugs and therapies.

"Drug companies are not interested in the pediatric market because it isn't big," said Dr. Sharon Murphy, a pediatric oncologist who is widely seen as an authority in the field.

Murphy, former chairwoman of the Pediatric Oncology Group before it merged with several other groups to become the COG, hopes that will change soon.

"There have been a couple of initiatives from [the National Cancer Institute] that have provided some foundation for optimism," she said.

Those include a testing program to evaluate the effectiveness of new drugs for childhood tumors and leukemia and a program that promotes faster development of therapies.

What Plautz, of the Clinic, said gives him hope is an increase in drugs targeted to particular types of cancer cells. One of those drugs, Gleevec, was approved by the Food and Drug Administration in 2003 for children with chronic myeloid leukemia, a disease more common in adults.

Prior to testing the drug, "the only option was a bone marrow transplant, and survival was low," Plautz said. "Now, you don't even need to do a transplant, and survival is much higher."

Also encouraging is the emergence of technology needed to sequence a human genome so that cancer treatments can be individually tailored.

"It's still in the research stage but within five to 10 years it may become part of patient care, of targeted therapy," he said.

"One hundred percent survival," Plautz said. "That's the goal we're working toward."


- Angela Townsend 

Christine Bork
Email Christine
(800) 458-6223



Childhood Cancer

Medical Information

Research

Coping with Cancer

Get Involved

About Us