Protecting patients from insurance delays

As a mom, you want to do everything to be there for your kids, and to support the activities they love and the friends they make. I feel lucky that I’ve been able to contribute to my community through my kid’s activities. I have been active in both of my children’s Boy and Girl Scout troops, and it was a joy for all of us.

But I was only able to do that when my chronic disease — recently rediagnosed as Crohn’s Disease — was in control and I was on the proper treatment. Sadly, because of interference from my insurance company, my treatment plan was compromised, and I was forced to step back from many aspects of my life, including working full time and working with the Scouts. Insurance companies shouldn’t have this type of control and that’s why I’m supporting efforts to pass legislation that helps put prescribing back in the doctor’s control by putting common sense parameters around an insurance industry practice known as step therapy.

I was diagnosed at 16 with ulcerative colitis — back then there were limited treatment options and my gastroenterology team did as much as possible to help me cope with the symptoms. But, due to a lack of available treatment, I ultimately had surgery in 1999 to remove my colon. The surgery was successful, and since then I feel fortunate to have been able to safely have my two children and was living a normal productive life until about three years ago — when the stomach pain returned.

Treatment and diagnosis of disease have progressed by leaps and bounds, and my team of doctors, taking into account my medical history and my personal and family situation — at the time having two young kids — chose a medication that they felt would be the best fit.

Unfortunately, what happened next delayed my care and sent my life into chaos. My insurance company, despite the doctor’s orders, denied my medication and demanded that I try a treatment of their choosing. This treatment would mean infusions every six weeks for hours at a time, an hour from my home, as opposed to self-administered medication. Only then if I failed would they consider the medication my doctor had prescribed. I didn’t know this was possible and hadn’t ever heard of step therapy — but now my life and my health were on the line because of it.

Laws to regulate this insidious practice that causes delays in care and can have terrible outcomes for patients like me have been passed in 27 states — including Connecticut which was among the first to do so. More is needed, however. Federal legislation is pending in Washington. Both state and federal laws are needed because different insurance plans are covered by both levels of the government. The Safe Step Act would help put better protections in place for patients across the nation. I recently tuned into an online webinar hosted for Connecticut lawmakers by patient advocates like me to talk about the legislation. The exciting news is the Safe Step Act is now being co-sponsored by Reps. Joe Courtney, John Larson and Jim Himes and both Sens. Richard Blumenthal and Chris Murphy.

It took months of appeals until my doctors were finally able to get me the medication they prescribed. During those months, my disease went untreated and that changed my life. I had to step back from my active life, and as a result, not only were my kids impacted, but so were the kids and families in my community who were part of their Scout troops.

That’s the thing. We all want to have responsible and reasonable cost coverage for the medications we need, but when the denials are based not on what’s right for a patient’s treatment, but on how the insurer can save themselves money, not only is the patient impacted, but their family, their employer, their friends and community.

We need to put common-sense parameters in place — especially as the debate over health care ramps up in the weeks and months to come. I urge Congress to take action on the Safe Step Act and protect patients from unnecessary delays and barriers to treatment.