When 18-year-old Josh Sommer was a freshman at Duke University, he was diagnosed with chordoma, a rare bone cancer. After surgery to remove a tumor pressing against his brain stem and several major arteries, doctors told him there was little else that could be done. But Sommer was determined not to accept the prognosis. As a college student, Sommer dialed into the Duke library to look up hundreds of articles in medical journals and research his condition. “Had I not been a student, I would not have had access to 90 percent of the articles,” says Sommer. “It’s ludicrous that someone who is not at a university is at such a disadvantage. It’s wrong.”
He brought this information to his doctor to discuss and determine the best method of treatment. Sommer also contacted leading scientists studying the disease and helped link their labs, spawning new research projects. Today, Sommers works at Duke conducting research on the causes of chordoma and feels empowered to fight the disease. The NIH policy allows patients to find vital information online for free to help them understand their condition and advocate for the best healthcare.
When Heather Joseph’s five-year-old son was diagnosed with autoimmune, insulin-dependent Type 1 Diabetes, she did what many worried parents should do. She got online and looked for every piece of current information she could find on the condition. Joseph first signed on at 3 a.m. after returning from a trip to the hospital with her son. “I was desperate for information that could reassure me that there was something else I could do besides wake my child up twice a night to check his blood sugar for signs of hypoglycemia,” she says. Joseph discovered a 2008 study of continuous glucose monitors, rating parent and patient satisfaction in the prevention of nighttime instances of low blood sugar. She found the information in the researcher’s final manuscript, posted just one month before, available solely because of the NIH Public Access Policy.
Access to this information has a day-to-day practical effect in helping physicians treat patients and save lives. Recently, Dr. Mark S. Drapkin of Newton, Mass., for example, was treating a 14-year-old girl diagnosed with a rare disease. Delirious and drifting into shock, death was a real possibility. Specialist colleagues had no suggestions for new treatment approaches.
Although his hospital library was closed for the night, Drapkin had it opened and did a quick PubMed search, where he quickly found information that aided successful treatment of the patient. “I would never have found these articles in the limited timeframe under which we were working without an electronic search of the literature,” said Drapkin.