Receiving a diagnosis for a chronic disease whether for yourself or your child can be devastating and confusing. When my son was diagnosed with hemophilia, he was just days old. I often think back to those first days and distinctly remember a conversation with a nurse, who would go on to become a long-term caregiver to my son, and a dear family friend. She said, 鈥淢anaging this disease is doable.鈥 Looking back nearly 15 years, later she was right 鈥 managing his hemophilia has been doable. But I think she forgot one important caveat 鈥 diseases are doable if you can afford it.

Though we worked aggressively with doctors to manage his conditions, it took until he was eight for us to find a medication that truly worked. With that new treatment we saw an immediate change in both his condition and his outlook on life. He continues to take this same medication to this day and fortunately our medical insurance has helped us keep the costs manageable.

Diane_advocateDiane_advocateAdvocate_DianeAdvocate_DianeDiane_AdvocateBut that鈥檚 not the case for many people with diseases ranging from hemophilia to cancer to arthritis.

Some insurers are requiring patients to take on a huge percent of the cost of their medications, and those costs can quickly add up 鈥 in some cases hundreds of thousands of dollars each year. The Affordable Care Act doesn鈥檛 seem to be helping 鈥 a recent study from Avalere Health showed that many patients with chronic diseases are being forced to shoulder large percentages of the cost of their medication through these new plans. Many plans require patients to pay up to 40 percent for the cost of their medication, as opposed to paying standard co-pay.

There are not many families I know who could sustain that sort of cost for long, let alone the lifetime of treatment that a chronic disease like hemophilia requires.

But now there is hope for patients, in the form of legislation that state lawmakers have proposed to curb costs.

A bill sponsored by Sen. Anthony Petruccelli would will protect patients with chronic and rare diseases and put a cap on out-of-pocket expenses at $1,250 per year for an individual and $2,500 per year for a family. For some families with chronic diseases, this legislation, which passed the Sente this week, is truly a lifeline. Our family is fortunate, because of our insurer鈥檚 benefit design, our son is an active teenager 鈥 playing sports and living life to the fullest.

Without our aggressive treatment options, some of his prior episodes could have cost long term damage to his joints and muscles. Without this medication, he could easily become disabled, which is something I regularly worry about.

When faced with a potential layoff a few years ago, I was not concerned with finding another job, but rather, would I be able to find sufficient coverage for my son鈥檚 condition with a new employer? What about when my son is grown? Will his insurance cover his needs?

Managing chronic diseases should be doable with help from your insurer. No parent should ever have to say to his or her child, 鈥淚 am sorry you live with constant pain and permanent disability, but, unfortunately, I just couldn鈥檛 afford the treatment that would have prevented it.鈥

Diane Lima is a board member of the New England Hemophilia Association and Hemophilia Federation of America.


*This op-ed was originally posted on July 24, 2014 in The Boston Globe. Click here to read this op-ed in its entirety.

Sign up for E-mails, Dateline Magazine, and other ways to stay connected.