There is nothing like a bit of pressure from an angry mom or dad to generate heat. And thanks to the modern wonders of the Internet, an Ontario schoolteacher has succeeded in forcing Johnson & Johnson to scramble to contain a mushrooming controversy. At issue: a months-long refusal by the health care giant to support further research involving one of its own drugs for a debilitating disease. The uproar emerged two weeks ago. Andrew McFadyen, whose eight-year-old son suffers from MPS, a group of rare genetic disorders caused by the absence or malfunctioning of lysosomal enzymes, grew frustrated with J&J and turned to the Internet to publicize his quest. For more than a year, he had hoped J&J would agree to work with researchers at the Mt. Sinai School of Medicine who found that a J&J drug called Elmiron may offer some hope. His primary contact at Mt. Sinai is Calogera Simonaro, an associate professor in the Department of Genetics and Genomic Sciences, who recently co-authored a paper showing various improvements in rats given Elmiron, a J&J drug that is approved for treating interstitial cystitis, which is also known as painful bladder syndrome. The two met a few years ago when Simonaro applied for a grant from the foundation that McFadyen created to further MPS research and help his son, Isaac. “She met with (J&J representatives) last spring to present her data to show how the drug worked and she reported back to me that they weren’t interested,” says McFadyen, who hoped J&J would back additional studies, such as testing in larger animals. “Essentially, we were put off. The discussions were not going anywhere. Our researchers and their medical team finally held a teleconference last November, but then, there was no follow up.”
