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Austinites leading the charge to improve access to experimental drugs

Friends say Andrea Sloan would have loved to attend a summit this weekend in Washington, D.C., that will focus on research for childhood cancer and expanded access to experimental drugs for all cancer patients.

Sloan, 45, passed away earlier this year after a fight to gain access to an experimental drug to treat her ovarian cancer through a process called compassionate use. She was eventually granted access to a different drug made by a different company, but by then, her cancer had progressed too far.

Now, her fight for better access to experimental drugs is being taken up on the state and national level.

U.S. Rep. Michael McCaul, R-Austin, founded the Childhood Cancer Caucus in 2009 and this weekend marks the fifth annual Childhood Cancer Summit. Two of the big issues under discussion this weekend will be how to get more pediatric cancer drugs on the market and how to expand compassionate use of experimental drugs for all patients.

“Andrea was a friend of mine,” McCaul said. “It was very sad to see. You could easily imagine yourself in that position, having a terminal disease and a company out there with a potentially life-saving drug.”

In the existing process, if a terminally ill patient wants to get access to an experimental treatment that has not received approval from the Food and Drug Administration, that patient’s doctor has to certify the person is terminal and no other treatment will help. The patient then has to sign consent forms and the drug company has to agree to release the drug. Then the FDA has to sign off on each individual case.

“It took a month for Andrea’s paperwork,” said Michelle Wittenburg, Sloan’s best friend and the president of the KK125 Ovarian Cancer Research Foundation based in Austin. “It was a month she didn’t have.”

On average the process can take six to eight weeks, said Kurt Altman of the Goldwater Institute in Arizona, which is pushing for reform of the compassionate use system.

The Goldwater Institute has written legislation that has passed in Colorado, Louisiana and Missouri called “right to try” laws. These laws remove the FDA from having to sign off on individual cases in those states.

“States can recognize rights greater than the federal government,” Altman said. “When there is nothing left to try and your life is on the line, we think the patient should be able to make that decision, along with their physician, to give it a shot.”

State Rep. Eddie Rodriguez, D-Austin, said he is examining similar legislation to put forward during the next session.

“I’d like to make Texas among the first states — not the last — to pass laws that empower patients like Andrea,” said Rodriguez. “She meant a lot to me, and I’m very committed to putting more power in the hands of patients like her.”

McCaul said he is working to develop federal legislation called the Andrea Sloan CURE Act. CURE stands for Compassionate Use Reform and Enhancement. The measure would help terminally ill patients find open clinical trials and make sure pharmaceutical companies have a clear, publicly accessible policy for expanded access. The bill would also require the pharmaceutical companies to report requests to the FDA and — if a request is denied — the patient should be told why.

“Andrea would tell me when she was at her sickest, ‘When I get through this we’re not going to quit. We’re going to change this and we’re not going to let this happen to anyone else,’” Wittenburg said. “I hate that she is not here to be at this summit and participate in it, but we are all heartened by the efforts of the Congressman and others.”

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