President Barack Obama signed legislation providing incentives for pharmaceutical companies to develop new drugs for rare pediatric diseases on Monday, and it’s in part thanks to a little Brenham boy.
In January 2003, Donna and Tim Culliver’s 4-year-old son Adam died within four hours of being diagnosed with a rare form of leukemia.
Adam got sick around 5 p.m. and was dead later that night, the father said.
“There is two ways to do this — you either go in a dark hole and never come out again or you get up and do something about it,” Culliver said.
Since Adam’s death, the Brenham residents have traveled to Washington, D.C., twice a year to meet with members of Congress about funding for pediatric drugs. That is where they met Rep. Michael McCaul, R-Austin, and his wife and shared their story.
McCaul introduced the Creating Hope Act of 2011 after being affected by the many stories he’s heard and children he’s met. His wife Linda serves on the board at M.D. Anderson Cancer Center.
“It really impacts and touches you, when you personally see these children fighting this disease,” McCaul said.
The act will transform the way drug companies look at the No. 1 killer of children — childhood cancer, he said. Also, there were no incentives for pharmaceutical companies to find new pediatric drugs because of a lack of profit.
“We haven’t had a [pediatric] drug developed since the 1980s, which I think is shameful,” McCaul said.
With the bill’s passing, companies that develop drugs for pediatric cancer will qualify for a priority review voucher. The voucher will allow them to take another drug they developed that could be more profitable and shave off four months of the Food and Drug Administration’s wait period, time that could rack up to $500 million for companies.
“The thing we need to start talking about is pediatric disease — we sure don’t spend money on [children],” Tim Culliver said. “Do you think a 65-year-old grandparent would say ‘Give me the drug first and allow my grandchild to die?’”
The question of how to get pharmaceutical companies to make needed drugs loomed until Nancy Goodman, founder of Kids V Cancer, proposed the voucher incentive, which already applies to companies that target drugs for tropical diseases, be used for pediatric drugs. Her son Jacob died of a brain tumor in 2009.
“Through advocates like the Cullivers and personal meetings, by the end of the day we found we were getting broad bipartisan support, a Ron Paul to Nancy Pelosi spectrum,” McCaul said.
With 12,500 children diagnosed with cancer each year, the Cullivers started their own ministry to help families any way they can.
Adam’s Angels Ministry was started as a mission out of First Baptist Church in Brenham and is now operated as the couples’ nonprofit organization from their own Brenham office.
A woman donated the office to the Cullivers a month ago, and Donna Culliver is aiming to have the grand opening in September, Childhood Cancer Awareness Month.
Tim Culliver works in the oilfield 14 days on and 14 days off so his wife can devote her time to helping families with financial, emotional and other types of support. The organization gives families gas cards and toys, helps them find places to live and offers prayers.
“Sometimes you just sit there and tears just flow from the happiness that someone is listening and hearing you,” she said.
Donna Culliver is currently working with two families in College Station.
“We do so much up in [D.C.] that doesn’t mean anything,” McCaul observed. “This bill at the end of the day will change something in the lives of children.”