Clearity Foundation
Established: 2008
Headquarters: San Diego
Purpose: Provide ovarian cancer patients with tumor profiling to guide therapy
Founder: Laura Shawver
Executive director: Hillary Theakston
Patients assisted in 2012: 110
Total contributions in 2012: $740,000
Total expenses in 2012: $595,000
Contact: www.clearityfoundation.org or (858) 657-0282
After two remissions from ovarian cancer, Jan Amato was diagnosed for the third time in 2011. Because ovarian cancer grows more resistant with each round of treatment, it was doubtful whether she would have a third remission.
For her third round of treatment, Amato received chemotherapy. But after four months, another tumor had formed — the cancer was still spreading. Her physician, Dr. Bridgette Duggan, said the treatment had failed, and nothing else was likely to work. Because of her previous treatment, Amato didn’t qualify for any clinical trials of experimental drugs.
At that bleak point, the Clearity Foundation, which brings personalized medicine to ovarian cancer, entered the picture. Clearity helps relapsed ovarian cancer patients by giving doctors the latest information on the most effective drugs for each patient.
Both Amato and Duggan knew of the San Diego-based foundation — Duggan from her work as a doctor, Amato from an article in the April 2011 issue of O, the Oprah Magazine.
“They were my last hope,” Amato said.
With Amato’s permission and Duggan’s encouragement, Clearity ordered tests from clinical laboratories that generated a genetic profile on Amato’s tumor, called a tumor blueprint. This blueprint was correlated with Clearity’s database of ovarian cancer patients.
Clearity’s somewhat unorthodox recommendation was to use the drug Pemetrexed, usually indicated for treating lung cancer and mesothelioma.
“Within three treatments, I was clear of tumor and any evidence that it ever existed,” said Amato, 59, a financial planner and Chula Vista resident.
‘Off-label’ uses
The tests Clearity orders measure a number of molecular markers, which can be matched to which mutations are “driving” the patient’s particular cancer. Then the patient’s physician can choose a treatment that matches the cancer profile.
Insurance usually pays for the tests. If not, and the patient can’t afford them, Clearity will pay. With each patient Clearity helps, another tumor profile is entered into its database of hundreds of ovarian cancer tumors. Clearity also constantly updates the database with the results of new research.
As with Amato, the suggested drugs might not even be indicated for ovarian cancer. Doctors have the authority to approve such “off-label” uses, using their medical judgment. But information on the genetic causes of cancers piles up faster than doctors can assimilate. They are too busy treating patients to keep up with the research, a full-time job in its own right.
Drug companies, a major source of information for doctors, would like to promote off-label use of their products, but it’s illegal to do so, even if the information is accurate. The reason is that drug companies, with their interest in selling more drugs, are too prone to providing biased information.
Clearity, as a not-for-profit, operates solely in the interest of ovarian cancer patients, said Laura Shawver, a biotech executive who founded Clearity in 2008 after her own experience with ovarian cancer.
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