Nebraska family sparks idea for cancer research bill

By Haley Dover, Nebraska News Service

LINCOLN–An email sent by one Nebraska family to all 49 state senators served as a plea for help–and illustrates how individuals can be part of the law-making process.

Mitchell and Karri Ahlschwede, whose family is affected by pediatric cancer, asked senators to write a bill that would give money to the University of Nebraska Medical Center to conduct research that could be the answer to saving their daughter, Leyna’s, life. The 2 1/2-year-old was diagnosed with Stage IV, High Risk Neuroblastoma — a cancer of nerve tissue — in February 2013 at her 18-month check-up.

Mitchell Ahlschwede of Lincoln was following an awareness campaign in September 2013 posted by the Gold Hope Project, a group of international photographers that have come together to photograph families for free, with the hopes of bringing about awareness of and raising funds for pediatric oncology research and treatment.  The project asked people to contact a senator or congressman to support bills related to cancer research.

“I did that in support of three bills at the national level, however, I believe in change at a state and local level are as important as awareness in Washington,” he said. “I decided to write every state senator and encouraged everyone I knew to follow suit.”

Ahlschwede received many emails in return expressing condolences, but he responded with more emails challenging someone to take action.

“While I appreciated the thoughts for my family, awareness is empty without action,” he said.

Sen. Danielle Conrad of Lincoln answered that email in late fall.

“As a parent, it was a personal story that touched my heart,” she said. “I started thinking ‘what if every Nebraskan pitched in $1 to pediatric cancer research?'”

With 1.8 million Nebraskans, $1.8 million could be donated to research,  Conrad said, and that became the amount of money that Legislative Bill 764 would give to UNMC’s cancer research center.

Dr. Don Coulter, a pediatric oncologist at UNMC and The Children’s Hopsital in Omaha, said the money would really just get the ball rolling. If passed, all of the funds would go towards conducting cancer research and hiring more faculty to conduct the research.

There is an existing research team of senior scientists who are engaged in work that addresses the root causes of cancer, as well as the means of enhancing the detection and treatment of cancer. That is funded by federal grants, Coulter said.

If passed, LB764 would give money to establish a pediatric cancer program and get more hands in the building to conduct research, he said, including new faculty or technicians who would assist them.

“The return on investment is really easy because you’re not wasting money on buying computers or machines — we already have those things,” Coulter said.  “Once you have the money to establish the program, it makes it easier to do future research and get future money.”

LB764 was brought to the Appropriations Committee Feb. 6. Committee members heard testimony from a dozen families affected by pediatric cancer, including the Ahlschwedes, who got the bill started. While the children and grandchildren of those who testified in support of the bill suffered from different forms of cancer, one thing was common among all of them: they had to leave Nebraska to get treatment because of the lack of experimental drugs in the state. This money could fix that, Coulter said.

“One mandate of our research group we have currently is every investigation, we want to have some kind of drug development that comes out at the end,” he said.

This could keep Nebraska families from having to travel to larger cities like Houston or Boston to participate in drug trials and instead they could stay closer to home and closer to their families, Conrad said.

While Leyna has been lucky enough to receive treatment in Omaha, the Ahlschwedes have met a few dozen families who have had to leave the state for treatment. Ahlschwede said they are fortunate that Leyna has responded well to all of her treatments and she currently has “no traceable evidence of disease.”

After meeting with the Appropriations Committee, Conrad said she felt the bill was well received and has hope that it will make it onto the committee’s budget report. To bring LB764 up for debate, five of the nine senators on the committee will have to give their support to the bill. It will then go through three rounds of floor debate and hopefully land on the governor’s desk, she said.

“When this gets signed into law, we’re going to have a big party with the kids to celebrate all of our efforts,” Conrad said.

Contact Haley Dover at nns.hdover@gmail.com

The Nebraska News Service is the state government news wire service provided by the University of Nebraska-Lincoln College of Journalism and Mass Communications.

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