Life-saving cancer drugs for children stuck in federal legislative limbo

(CBS News) There's been a nationwide shortage in life-saving cancer drugs for children. The Food and Drug Administration (FDA) tells CBS News that 14 drugs are in short supply.

Fifteen months ago today, Republicans and Democrats introduced bills to solve to problem. The Preserving Access to Life-saving Medications Act would require drug companies to notify the FDA if a shortage is coming. Both parties and the President support the bills, yet they haven't passed.

28 cancer medications in dangerously short supply

CBS News medical correspondent Dr. Jon LaPook found out more about the shortage and then traveled to a place he'd never worked before -- the U.S. capitol.

Ten-month-old Elena Schoneveld is running out of life-saving medications that can treat and cure her cancer.
CBS

A good day may not look great when you're ten months old and fighting leukemia like Elena Schoneveld. But 80 percent of children with her kind of cancer can be cured with the right medications.

Two months ago, her dad Mark Schoneveld was told her chemotherapy drug, methotrexate, was running out.

"You just pray that stuff is handled by the professionals, and people do their jobs and get it done," he said to CBS News.

But, it's not getting done. Dozens of cancer drugs are running out. The reasons include manufacturing problems and reduced production due to lower profits with generic drugs.

"The industry has to not be afraid to let the FDA know if they have a problem so that we can get in there and work with them and fix it before it results in a shortage," FDA commissioner Dr. Margaret Hamburg said to CBS News.

The FDA said that the two bills that are languishing in Congress would help fix the problem by requiring drug companies to give the agency early warnings.

The bill's sponsors -- Republican Senator Susan Collins, Democratic Senator Amy Klobuchar, Democratic Representative Diana Degette and Republican Representative Tom Rooney -- have watched it go nowhere. LaPook asked them why, despite the fact they have live-saving legislation that both parties agree on, they can't bring the bills to a vote.

"I don't know what has to happen for people to recognize that this has to happen," Rooney said to CBS News.

"Why would we turn our backs on these patients and on the medical community who needs this help when we know something helps?" Klobuchar said to CBS News.

LaPook asked why it was taking months and why it couldn't be voted on today.

"I've been in Congress for 16 years," Degette said to CBS News. "I have never seen a Congress more difficult to pass legislation. I think you should call the leadership and ask them why they haven't brought this bill up for vote!"

So LaPook did. He showed up at Speaker of the House John Boehner's weekly press briefing and asked why legislation that everybody agrees is desperately needed is taking so long to pass.

"Well, the Congress is working on this," Boehner told CBS News. "The Senate is getting ready to move a bill. The Energy and Commerce Committee is getting ready to mark up a bill in early May. But I would also ask: Where's the administration been? Where's the president of the United States been?"

LaPook responded that the legislators told him to talk directly to Boehner.

"I respect the committee process, and the committees have their work to do to investigate this," Boehner responded.

Remember, that committee process began over a year ago. During that year, another of Elena's drugs has hit the shortage list. She needs it to soften chemo's toxic effects.

"I can't imagine what it would be like without it. When you have diaper rash which is literally an open wound over your whole bum, it's like screaming pain. It's horrible," Mark said.

Legislation has cleared a committee but still needs a vote by the full Senate. LaPook asked Senate Majority Leader Harry Reid to explain why it has taken 14 months before has even began to look like something is going to happen.

"You know, as I said, things take a long time. When someone's been a governor in a state and comes to Congress and goes, 'Wow, what's going on here?' That's the way we've always been," Reid told CBS News.

LaPook asked Reid if he had any power as a one of the leaders to move the legislation along faster.

"I would say this. First of all, things have happened. We'll have it on the floor soon. There's a step in the right direction, but there's no way I or anyone else can explain how slowly things move here in the Senate. It's been that way for 230 years," Reid said.

Reid told CBS News he hopes the full Senate will vote on drug shortage legislation by July 4th, and that he expects it to be approved.

Fortunately, Elena has not missed any medication, but others have. This legislation, while not a solution, is at least a step in the right direction.

  • Jonathan LaPook

    Dr. Jonathan LaPook is the medical correspondent for the CBS Evening News. Follow him on Twitter at @DrLaPook

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