Austin woman dies after prolonged battle for access to experimental cancer drug
Austin American-Statesman (TX)
Jan. 03--Andrea Sloan, an Austin woman whose fight for an experimental cancer drug drew hundreds of thousands of supporters across the world, died New Year's Day from complications of pneumonia.
Sloan, 45, attracted international attention last year with a powerful social media campaign to pressure BioMarin Pharmaceutical to let her use an unapproved cancer drug that, while not yet FDA approved, has shown success in early trials. The California-based company refused, saying it would be "unethical and reckless" to give her an unproven cancer drug.
More than 230,000 people signed an online petition supporting Sloan's effort to obtain the drugs. Her Facebook page -- Andi's Army -- has more than 15,000 followers.
"I have the most blessed life on the planet," Sloan told the American-Statesman in September. "I'd like to keep it going."
As the executive director of the Texas Advocacy Project -- which provides free legal advice to victims of domestic abuse and sexual assault -- the Austin lawyer knew how to advocate for herself. But Sloan's battle for the drug quickly morphed into a bigger mission: to reform the FDA's "compassionate use exemption."
That exemption allows pharmaceutical companies to provide unapproved medications to seriously ill people who are not in clinical trials and who have exhausted other treatment options. There is no single policy or process followed by the drug companies, no single list of drugs available through compassionate use, and no way to force the drug company or FDA to approve the desired treatment. Some companies don't have policies at all.
Sloan and her army of followers began to advocate for laws that would require each pharmaceutical company to develop its own compassionate use exemption policy outlining guidelines so patients could navigate the system more easily.
Sloan took her advocacy effort to political leaders in Washington, including former House Speaker Newt Gingrich and U.S. Sen. Ted Cruz, R-Texas. State leaders also backed her, with more than 80 Texas legislators signing a letter asking the California State Assembly to put pressure on BioMarin.
"This is life and death for a lot of people," said Rep. Eddie Rodriguez, D-Austin, a friend who spearheaded the effort.
Sloan was diagnosed with ovarian cancer seven years ago. She went through chemotherapy, a stem cell transplant and multiple surgeries. Last summer, doctors at MD Anderson Cancer Center advised Sloan to pursue a compassionate use exemption for BMN 673, which early research shows has had a positive effect on 44 percent of the ovarian cancer patients who took it.
Sloan eventually got a similar drug from a pharmaceutical company in October. But by then, her health had deteriorated, said friend Deece Eckstein. The name of the company was not released because it had requested confidentiality.
Family and friends will remember Sloan as more than just a fierce advocate for compassionate use laws. She loved horses and Ryan Gosling. She listened to music by Bon Jovi and Luke Bryan. She looked great in yellow.
Eckstein described Sloan as a "force of nature" devoted to making a difference in the world.
"Laws are going to change," he said. "I think that that's going to happen. That's going to be her legacy."
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