My daughter, Delia, is one of the most wonderful people I know. She is kind, she is generous and she is resilient beyond belief. In her 13 years, she has seen more hospital rooms than I care to think about. You see, Delia was diagnosed with epilepsy at 4 weeks old. She’s also had cancer and lives daily with mitochondrial disease as well as several other chronic illnesses.

But none of that stops her from being determined to go to school and spend time with friends and family.

Luckily, because of scientific advances, she’s on multiple medicines that help keep her alive and as productive as possible.

Even though it can take years – even decades – to bring new medicines to the market, not a day goes by that our family doesn’t pray that scientists will develop cures for her diseases.

For now, we continue to rely on our insurance to cover the cost of her medications. We pay our premiums dutifully because losing access to any one of these drugs would be devastating.

In fact, we also had to get supplemental insurance because the insurance we do have wasn’t covering enough.

That’s why I was outraged and disappointed to learn that a bill is making its way through the state Legislature that, if passed, could threaten not just my daughter’s life but also the lives of thousands of other patients in Maine.

The bill – L.D. 675 – will allow a private organization in Boston, the Institute for Clinical and Economic Review, to determine what the value of drugs are. ICER is known to use a very complicated mathematical formula based on things such as how far the disease has progressed, age and other factors to create what it calls a “quality-adjusted life year” or QALY value. It uses that to set a cap as to what the insurer should pay based on what it determines the patient’s quality of life will be.

I am horrified. Why would we put Maine’s health care decisions in the hands of a discriminatory out-of-state third party?

No one has the right to tell Delia what her quality of life is like. She’s the one who determines that.

If this independent entity, which has never met Delia, or any patients for that matter, and that does not conduct any medical trials, deems that my daughter’s medications are too expensive and that her quality of life isn’t worth the cost, here’s what will happen: Her diseases will progress, which will increase health care costs because she will end up in the emergency room, our family will be disrupted and she will end up on disability, which, in turn, will cost the state more. Let me ask lawmakers these questions: Does that even make sense? Wouldn’t it be more cost-effective to pay for the medication that keeps her productive in society?

If this bill passes, it will be a callous and discriminatory way of determining health care. Is that what we’ve come to?

Having done some research I also found out that using the QALY method violates the Americans with Disabilities Act, which is exactly why the federal government has banned its use in Medicare.

Throughout my daughter’s short life, our family has certainly learned that the same medicine can work in different ways on different patients. What works for one might work differently for another. Just because one person is in a wheelchair and another is not does not mean one person’s quality of life is less valuable than the other one’s. Arbitrarily assigning a quality-of-life value on a drug has life-changing, and potentially deadly, consequences.

We pay for insurance for a reason. I truly hope our lawmakers will oppose L.D. 675.

My daughter didn’t choose to get these chronic illnesses. Thanks to medical advances she can live a fulfilling life if allowed. She, and all the patients she represents in Maine, deserve that.

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