"It's estimated that 1.4 million Americans have IBD," he says in a phone interview. "If you expand that to all autoimmune diseases, it gets up to about 23.5 million Americans, or about one in 12. When you think about that, you realize this is becoming such an enormous public health issue."
With each autoimmune disease -- whether it's lupus, rheumatoid arthritis, Type 1 diabetes, or IBD -- the body is in a state of war with itself, the immune system attacking what it considers enemy tissues. For those with ulcerative colitis, for example, the colon begins to develop ulcers that then start to bleed. Left untreated, it can lead to hospitalization and emergency blood transfusions. In most cases, the only treatment for such a disorder is to suppress the immune system with the help of steroids until it goes into remission. In recent years, there is increasing use of alternatives to steroids, including some medications that were initially used to treat cancers or prevent organ transplantation. Many of these medications bring unwanted side effects and risks of infection.
There are a number of theories as to why there has been such a sudden spike of these diseases. One that's been gaining momentum of late is often referred to as the Hygiene hypothesis.
"It's the idea that we're just too clean," Lewis explains. "We're exposed to too many antibiotics, and a lot of these may link back to some fundamental biology relating to what's going on with the microorganisms living in our intestines today compared to centuries ago."
Scientists who subscribe to this idea believe we evolved along with thousands of species of microbes, and the rise of antibiotics, while beneficial for treating once-deadly infections, has eliminated many of the microorganisms that helped regulate our immune system.
As evidence to support this hypothesis, they point out that autoimmune disorders predominantly exist in Western countries with more access to modern medicine and clean water.
Scientists have also found both genetic and environmental factors at play. And as they continue searching for a cure, doctors have become much better at diagnosing these diseases. With increased awareness, IBD became less stigmatized, allowing more people to speak out on it.
"I think historically, we just don't talk about our bowel patterns in public," Lewis says. "But this is one of lots of things becoming destigmatized. There were lots of diseases that people were uncomfortable talking about 20 years ago, and today I think our society is becoming a little more accepting of the reality that people have diseases to deal with, but it doesn't mean they can't be active or important members of society."
In fact, if you trace the trajectory of Ally's Law from state to state, its most vocal proponents were those who either suffered from IBD or knew someone who did. In Massachusetts, the state that most recently passed such a law, Boston mayor Thomas Menino, a longtime Crohn's sufferer, was one of its most outspoken supporters. In the last decade a number of celebrities, including Mike McCready, the lead guitarist of Pearl Jam, have come out and discussed their IBD with the public.
For a law that had never been enacted in another state, Ally's Law moved fairly swiftly through the Illinois legislature. Bain was aided, in part, by then-State Rep. Kathy Ryg, her state legislator she'd met only a few months before during an eighth grade field trip. After explaining briefly how a bill becomes a law, Ryg handed the students a directory listing of all the state legislators.
"I remember my classmates not really caring, just flipping through it," Bain says. "But I was just in awe, standing in that rotunda just outside the House floor. I didn't quite understand what they did fully, but I got the idea that these lawmakers can make a difference and that we could have some say in it."