As the president of a national patient advocacy organization, I was shocked to read the list of the newly appointed members of Connecticut’s Health Insurance Exchange Board.

As a Connecticut resident, and patient, I am outraged.

This past legislative session was eye-opening for me and the members of my organization, the US Pain Foundation. We were successful in passing legislation that will prohibit insurance companies from forcing pain patients to fail on a series of medications before paying for the prescription that the patient’s doctor has ordered. Outlawing this practice, known as step therapy, or fail first was a true win for pain survivors in Connecticut.  But it didn’t’ come without major pushback from the insurance industry in the state.

I was amazed at the tactics and schemes used by the lobbyists who were fighting against our cause. I truly feel that our side was successful because of the voices of the residents in Connecticut who contacted their lawmakers and helped push the legislation forward. 

Leaving patient advocates off the Health Insurance Exchange Board silences those same voices.

How is it that the team that will make decisions on how and what healthcare should cover as part of these exchanges are from insurance companies and political appointments—not the patients who need these services the most?

The spirit in which these boards were conceived is obvious in the name of the federal act that created them. “The Patient Protection and Affordable Care Act” (PPACA), was signed into law in March 2010. Excluding patients—-the exact people who have to navigate complicated healthcare plans is at best short sighted and at worst discriminatory.

I was encouraged to read in the CT News Junkie article that appointee Mary Fox, a former Aetna executive thinks that “chronic disease management and prevention are important goals”. I just don’t know how much some of her fellow board members will agree.

If I’ve learned anything in the past eight years since my accident and subsequently starting the US Pain Foundation, it is that each individual’s medical situation is unique, no matter what disease or condition they may have. The board representing how these individuals should be covered can’t do the job the right without representation of these groups.

This board has the chance to do some real good for the residents of our state. The Gov. Dannel P. Malloy’s administration and our legislative leaders need to take a look at the board they have created and reconsider who’s at the table.

Paul Gileno is the President and Founder of the US Pain Foundation, a 501©3 nonprofit that was founded by people with pain, for people with pain. He lives in Shelton