As a mother of four, I remember how attentive I was in teaching my children how the choices they made had consequences. I think that truly understanding cause and effect of our choices is vital to us thriving in our day-to-day lives and is one of the most essential parts of our survival. We cannot make choices without options.

I have worked the past twenty years as the Chief Executive Officer of two related charities — the Gastrointestinal Society and the Canadian Society of Intestinal Research (CSIR) — helping patients who have a variety of digestive conditions. In fact, the CSIR began 40 years ago when a woman in her early 20s died of Crohn’s disease, a chronic inflammatory bowel disease (IBD) that can affect any area of the gastrointestinal tract. She died because the medications available at the time were ineffective for moderate to severe cases of IBD, which includes Crohn’s disease and ulcerative colitis, and the treatment options were surgical removal of parts of the digestive tract. When you remove too much of the digestive tract, or when the disease stops your gut from working — you die.

Advances in treatment

Today, we are fortunate that the quality and quantity of life for a person who has IBD can be close to normal with newer drugs that have revolutionized treatment for these individuals. Biologic medications are very large, intricate molecular medicines made using living cells and a complex biotechnology process. Some examples are vaccines, insulin, and the monoclonal antibodies used in IBD. While biologic medicines are not new, they have diversified into very sophisticated medicines that continue to improve health outcomes for patients in a number of disease areas. For IBD, they are lifesaving.

"I am disappointed that many patients do not have well-managed symptoms and we still have diseases without a cure."

Now, just as my four children were different from each other in their actions — and in almost every other way — each IBD patient is unique. We are learning more about how unique we are since researchers cracked our genetic code with the Human Genome Project in 2003. We know that even though certain medications are effective in treating specific diseases, they do not work for everyone. Researchers cannot understand this gap, which is why they keep trying to find medicines that work for those who have not yet found options to manage their disease successfully.

Patient access

John Lydgate’s insightful quote from around 600 years ago, “You can please some of the people all of the time, you can please all of the people some of the time, but you can’t please all of the people all of the time” could be an analogy for treating unique individuals with a common disease. We cannot all be lumped into a single group and all receive the same treatment. We are all human; we are all unique.

I am disappointed that many patients do not have well-managed symptoms and we still have diseases without a cure. On the other hand, I am encouraged because some researchers are willing to continue to investigate the human condition and delve for those elusive options.

When we look to our public and private insurance providers these days for coverage of available treatment options, they respond counterintuitively by restricting choice, using short-sighted, cookie-cutter policies disguised as cost savings. For example, even though proven, effective treatments are available, patients may not get coverage for them due to the business practices of drug plan managers. We also need to guard against drug plans forcing patients to switch medicine for non-medical reasons.

It would be like denying my children the choices for their extracurricular activities and telling my musical child she has to play football and my athletic one he has to take up the clarinet. My children made different choices from their siblings because they are different.

In this age of quantum leaps in understanding our uniqueness — we must offer patients more choices, not fewer. Patients are diverse and disease is a serious matter. When innovative, effective treatments come to market, patients need access.