WASHINGTON -- For the past seven years, Andrea Sloan, 45, has fought her ovarian cancer with five surgeries, multiple rounds of chemo and radiation, and a stem cell transplant. Now, with her cancer back, she’s down to one hope left in her arsenal: social media.
Sloan is an Austin attorney and executive director for the Texas Advocacy Project, a group that offers pro bono legal services for victims of domestic violence. Despite traditional efforts to fight her disease, Sloan's body is no longer responding to typical treatments. But Sloan and her doctor believe a drug being developed by BioMarin, a Northern California-based pharmaceutical company, could prolong her life.
BioMarin has declined Sloan's request to use the drug. Now, Sloan, her family, friends and doctor have launched a campaign via Twitter, Facebook, and an online petition in an attempt to convince BioMarin to allow her to take the drug under a compassionate use exemption -- a term for when a company allows a patient to use an experimental drug that hasn't been approved by the FDA because no other options are available.
Since BioMarin has refused her pleas for the potentially life-saving drug, Sloan said she feels like she's now waging two wars –- one against the cancer eating away at her body, and one against the pharmaceutical company hiding behind red tape and corporate double talk.
“Right now what I need is hope,” Sloan told The Huffington Post. “If [BioMarin] would allow me just a little bit of that, I would sing their praises.”
In a statement released to HuffPost, BioMarin wrote that the company supports the kind of exemption policies Sloan hopes to use. "As a company, we do support preapproval expanded access programs," the statement read. The company added that more research is needed on the drug Sloan seeks.
But Sloan and her doctors can't wait. Sloan, along with her Facebook followers known as “Andi’s Army,” are pressing on with their campaign, gaining attention among the Texas and even national press, and winning over politicians to their cause. The petition has attracted more than 30,000 signatures in a matter of weeks. Former House Speaker Newt Gingrich has signed on.
Too many cancer patients like Sloan have battled for years, only to find their cancer back and the old tools no longer effective. Sloan's doctor, Charles Levenback, says he can’t operate on her anymore.
“We frequently reach this point with patients, where we look for a clinical trial,” Levenback, a Professor of Gynecologic Oncology at the University of Texas MD Anderson Cancer Center, said. “The difficult truth, the very sad truth is that for patients -- it’s not just about Andrea Sloan. We could go to my clinic tomorrow and find patients with similar circumstances.”
The only difference between Sloan and his other patients, Levenback said, is that Sloan's experience as a lawyer and advocate makes her especially suited to publicizing her life-and-death plight. Levenback said he's talked to Gingrich personally, and that Republican politicians in Texas have reached out to BioMarin on Sloan's behalf. On Tuesday, 82 Texas lawmakers sent a letter to the California legislature regarding Sloan's case. “Everyone involved -- including the politicians -- are frustrated by this,” Levenback said.
Earlier this month, Gingrich wrote an essay about Sloan's fight under the headline "A Sick Bureaucracy" on his Gingrich Productions website.
“Everyone wants to ensure our drugs are safe, but we must do something to speed up the bureaucratic process which keeps breakthroughs mired in studies and red tape for decades, or nips them in the bud entirely. The regulatory system originally intended to keep Americans safe has become so slow and ineffective that it is killing them,” Gingrich wrote.
Sloan’s decision to zero in on BioMarin as her possible last hope isn’t without justification. Levenback believes her type of ovarian cancer makes her likely to benefit from this class of medicine. BioMarin's drug, known as BMN-673, could target Sloan's type of cancer mutation without damaging healthy cells, Sloan and Levenback said. The drug is also more potent than others, which means it can be used in smaller doses -- good for someone with Sloan’s medical history.
Whether Sloan is a good candidate for the drug seems to be immaterial to BioMarin.
In an email Sloan provided to HuffPost, BioMarin Chief Medical Officer Henry Fuchs wrote that the company is "not currently recruiting patients with ovarian cancer to clinical trials. We are evaluating whether to conduct additional clinical trials in ovarian cancer but have not come to a conclusion yet. And I can’t give you a time frame in which a conclusion might be reached.”
In another email provided to HuffPost, Fuchs appeared sympathetic to the plight Sloan and patients like her face. But, he wrote, more clinical trials are needed for BMN-673.
“When patients have exhausted all options for approved therapy, we believe it's in patients' individual and collective best interest to participate in clinical trials where we test formally whether optimism and hope can be fulfilled,” Fuchs wrote. “While BMN-673 looks promising, we do not know yet whether it works, and in whom it works. We need to go through the clinical trials process because we want patients to have access to therapies if they are scientifically proven to work.”
Fuchs has been effusive in his praise of BMN-673 in his public comments. In January 2011, he remarked that "BMN 673 appears to have superior potency, selectivity, and bioavailability as compared to other products in development." In July of this year, he declared in a press release that "the data emerging from the ongoing BMN 673 study is progressively more encouraging."
Fuchs did not respond to email and phone requests for comment.
Sloan says BioMarin is no longer communicating directly with her. Levenback said company officials recently told him that there might be a clinical trial opening in Maryland. But, he said, there’s no guarantee that Sloan will meet the trial’s criteria to participate. With no set date on when the trial might start, Levenback said, it may be too late to help Sloan -- whose cancer is progressing.
This is just the latest curve in Sloan's ordeal with cancer. Diagnosed at 37, she had a hysterectomy and then extensive rounds of chemo that caused her to lose her hair. “I did all the traditional stuff you see on the Lifetime network,” she jokes. But she survived. After a two-year remission, the cancer came back. A stem cell treatment and radiation required her to move into an apartment in Houston to be closer to the hospital. But she survived.
Five months ago, Sloan said, she finished radiation treatment for cancer that had spread to her lymph nodes. In July, the cancer returned to her pelvis. “Every time I can get to this place where I think I can breathe, it rears its ugly head again,” she said. “I’m ready for the cure. I’m ready to close this chapter and start my new one.”
On Thursday, Sloan had an appointment with Levenback. The news wasn’t good. She said he told her: “We need to have the [BioMarin] drug in your system within the next two weeks.”
That same day, Fuchs sold 10,000 shares of BioMarin stock, making $700,000. A company spokesperson confirmed the sale to HuffPost.
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