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First study on financial impact of brain tumors paints a bleak picture for insured and employed patients

SAN FRANCISCO, CA, May 9, 2007 – A new study released by the National Brain Tumor Foundation, The Financial Impact of a Brain Tumor Diagnosis on Patients and Families, reveals that the financial impact for patients suffering from brain tumors is devastating and life-changing.

The results of a yearlong survey of mostly middle-class patients and caregivers show conclusively that brain tumor-related expenses can force even educated, employed and well-insured patients to become financially destitute.

According to Harriet Patterson, MPH, Director of Patient Services for the National Brain Tumor Foundation (NBTF), patients can become financially ruined because of the high cost of treatment.

“This survey, the first of its kind, is a wake-up call to alert us to the dramatic financial impact that patients and families face when diagnosed with a brain tumor,” said Patterson. “The high cost of treatment, even for insured individuals, coupled with their inability to work and obtain disability income leaves people financially strapped.

And that debt continues not only during the treatment period, but for those unable to go back to work, throughout the rest of their lives.”

The survey showed that a startling 91% of patients were working and had insurance before being diagnosed. Despite this fact, many middle-income people had to borrow money from friends and family, max out credit cards, sell their homes and cars, declare bankruptcy and in some cases even become homeless because they couldn’t pay their bills.

“The brain is the center of thought and personality and much of an individual’s function,” explains Patterson. “Unlike other serious illnesses, tumors and their treatments often have severe impact that limits an individual’s ability to work, drive, socialize and more.

The inability to return to work affects not only household income but the availability and affordability of health insurance coverage.”

Patterson went on to say that factors such as “designer” cancer drugs, which are often the protocol for treating malignant brain tumors, are very costly, and the regimen is frequently long-term, sometimes up to 24 months

For patients with insurance coverage, the co-pays for these prescriptions can be more than $1,000.00 a month. Expenses like medications, physician visits, hospital bills, follow-up MRIs, supplements and services such as rehabilitation and transportation all add up.

The study also found that there are no systems currently in place to fill the gap and help patients who have insurance coverage. The National Brain Tumor Foundation’s Patient Help Fund is one of the few financial assistance programs available to help the brain tumor community fight the financial burden of this illness.

“The good news is that patients are being cured more often and are surviving longer,” said Dr. Paul Fisher, Associate Professor of Neurology at the Stanford University School of Medicine. “The bad news is that with every year of survival comes the unimaginable financial burden for patients and their families.

The bottom line is that no one can afford to have a brain tumor.”

A nationwide survey, which began in the summer of 2006, generated response from 491 individuals – 277 patients and 214 caregivers. While more than 90 percent of those surveyed had insurance, the resulting debt drastically influenced the quality of life for the patients and their families.

The survey also revealed that disability insurance was extremely difficult to obtain for brain tumor patients, making the debt unmanageable. The extensive disability applications make it difficult for cognitively impaired patients to accurately complete the forms.

This often results in denials on the first application – while those who are accepted must wait two years before receiving Medicare disability coverage. Thus patients often face long periods with no insurance.

“Brain tumors not only represent a medical crisis for patients and their families,” said Patterson, “but this study also shows that they represent a financial crisis as well.”

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NBTF is a nationwide, non-profit organization dedicated to providing information and support for brain tumor patients, family members and healthcare professionals, while supporting innovative research into better treatment options and a cure for brain tumors. For the complete report see

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