My Mother Died of Alzheimer’s – We Need to find an Affordable and Effective Treatment

President Trump recently addressed his plan to reduce the high cost of prescription drugs, a major priority of his and HHS Secretary Azar. This is one of a series of blogs by Americans who have been challenged by expensive medications.

My mother had Alzheimer’s disease and passed away in 2002 after 11 years living with the disease. She was 63 when she was officially diagnosed, following several years of at first a subtle, then eventually a more obvious cognitive decline. She was increasingly forgetful, certainly frustrated, and very emotional. At the end of her life, she was bedridden and no longer communicative, although she still managed to sing parts of favorite songs and recall bits of prayers from her childhood.

My mom was not able to be involved with some of her children’s weddings. She had no knowledge of some of her grandchildren. I have two little grandchildren, and I want them to know their Gramma – me. My own kids didn’t have that experience with my mom; they were robbed of that.

Because of my family history, I’m at a higher risk for developing Alzheimer’s. That worries me. None of the current drugs being used for Alzheimer’s patients prevent or cure the disease. Some of the medications are not started until the patient is well into dementia, and the best the drugs can do is stave off the symptoms temporarily – and only in some patients.

We will find a treatment for Alzheimer’s – it’s going to happen. I’m doing all I can as a volunteer advocate to help make it happen.

And when we do find a treatment for Alzheimer’s, it’s going to be very important that those drugs are affordable. Anything that will be done to keep drug prices down, while not stifling innovation and discovery, would be greatly appreciated.

From the perspective of an Alzheimer’s advocate, it would be unbelievably cruel if when we get to a treatment, the prices put them beyond the reach of most patients. What good would they be?

The majority of people now diagnosed with Alzheimer’s are older adults, but with better diagnostic tools, we’re finding increasing numbers of younger people with dementia. It would be particularly tragic for them to learn of a new, effective treatment but not be able to afford it.

I’m hopeful, because I believe many dedicated people in and outside of government are committed to improving the healthcare industry, and especially to making life-saving drugs available and affordable.