Cancer patients, like me, have two focuses in fighting our disease: working with our doctors to find the right course of treatment, and being sure that we can pay for the often very expensive drugs we need to keep us alive. We also follow efforts by government to address medical costs, including a bill at the State Capitol this year that offers big promises to patients on drug costs – and little hope that it can even make so much as a dent.

The cost of medication isn’t a theoretical policy issue for me and the patients I’ve met and come to know while receiving treatment. When you’re fighting a life-threatening illness like cancer, and, in my case also helping my granddaughter fight Type 1 diabetes, you learn firsthand about the complex, ongoing and expensive courses of treatment needed to keep you alive. I, like most patients, quickly became an expert on medical costs, down to the dollar.

Every three weeks I receive two chemo infusions which are billed at the rate of $36,423.  I have a medicine to replace my pancreas which stopped working that costs $1,200 a month.  Without it I would be unable to digest many foods.  Recently I was put on another new drug developed from private and NIH research.  Its cost is $5,000 for which I pay only a $55 copayment.

I know how fortunate I am that my drug costs are covered by insurance through Medicare and my husband’s military benefits that he receives as a retired Marine. I also know that my costs would be difficult for many Colorado families to shoulder.

That’s why every patient I know is keenly focused on efforts to help provide more information about the cost of drugs.

House Bill 1260, being considered in the Colorado Legislature, has been touted as a way to make drug costs more transparent by disclosing more information from manufacturers. On the surface, this might seem like a good idea. But I was disappointed to learn how little it really does for patients like me. It certainly doesn’t provide much information that isn’t already available publicly, and it provides nothing new to help me work with my doctor to decide the best, and most affordable, course of treatment.

For example, some very simple online research will uncover a significant amount of information on costs and sales. It is not clear, then, why the state would want to create an entirely new system to force reporting of what is already public – and then, one assumes, create a new expensive bureaucracy to enforce the reporting of what these same bureaucrats could find with a few Google searches.

As I have become adept at research, I have also found out that there is a significant amount of cost information that is critical for patients to know, and which is not required by HB 1260. Very often, drug manufacturers offer significant discounts to insurance plans for medication. But these discounts are not always passed along to patients like me. While I am not sure what those discounts truly mean to my insurance company, I know that patients would appreciate any relief for our out-of-pocket expenses.

If the legislature wants to truly create transparency in drug prices, then it should require that insurance companies disclose the discounts they receive on medicines, and whether those discounts are being shared with patients.

Why isn’t that simple, common-sense and very useful requirement part of HB 1260?

Patients don’t need gestures from our elected officials. We are eager to support substantive solutions that truly address the cost factor in medical care. Unfortunately, HB 1260 is another in a long line of proposals that make headlines, but don’t make a difference for Colorado patients.