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Mesothelioma survivor tells Congress more funding is needed to combat disease

Bonnie Anderson, whose access to an experimental treatment 10 years ago has helped her survive mesothelioma, has submitted testimony to the U.S. Congress asking lawmakers to increase funding for research into the deadly disease.


Anderson was diagnosed with peritoneal mesothelioma, a cancer of the lining of the abdomen, in 2001. After doctors told her she had six months to live — a common prognosis for mesothelioma cases — she enrolled in a clinical trial of an advanced treatment only available to a small number of patients.


In her written testimony, Anderson told a House appropriations subcommittee that increased funding for clinical trials would give more victims of the disease access to cutting-edge drugs and treatments.


She testified that research funding for the disease has been declining steadily. In 2010, she noted, the National Cancer Institute committed $8.3 million in mesothelioma research, 6 percent less than in 2009. At the moment, there is only one drug —pemetrexed disodium — that has received approval from the Food and Drug Administration specifically for the treatment of mesothelioma.


“This steady decline in funding terrifies me as a patient anxiously awaiting development of new treatments,” she said. “At this juncture, unless researchers have the funds to continue, patients like myself will have run out of treatment options and will die from this disease.”


Mesothelioma kills 2,500-3,000 Americans each year. The disease is caused by asbestos exposure and is invariably fatal, typically within 18 months of diagnosis. But research into new treatments for mesothelioma is being ignored, in large part because of legal and economic considerations related to the continued presence of asbestos in building materials and other products.


Data shows that funding for mesothelioma research lags well behind other cancers. Between 2004 through 2007, the National Cancer Institute’s annual investment in clinical mesothelioma research was less than $6 million — one tenth of one percent of the NCI’s annual budget, and nine times less, per death, than funding dedicated to researching other cancers.


In her testimony, Anderson recounted her battle to get insurance coverage for her treatments, which included six surgeries and multiple rounds of chemotherapy and radiations. But she said she believed that even if she died from the disease, the experience would help others.


“I participated knowing I could face devastating side effects,” she said, “but with the hope I could help doctors learn how to treat mesothelioma and possibly add precious minutes to my time with my family.”


Anderson was recently honored for her mesothelioma advocacy by the New Jersey Work Environment Council. Other honorees included Lisa Jackson, head of the U.S. Environmental Protection Agency and New Jersey Congressman Frank Pallone.