The Problem I Have With Alzheimer’s Disease Headlines Like These


The headline on the article reads:

“New Alzheimer’s treatment fully restores memory function.”

What great news! Headlines like that have been circulating around the Internet, forwarded from friend to friend for several years now. They refer to tests being conducted in many different labs around the world. As my husband died of Alzheimer’s disease, everyone I know is quick to send them on to me.

Unfortunately these headlines are misleading.

When one reads the stories that follow, it turns out the patients involved in these many trials were mice.

Alas, my husband was not a mouse. And neither are the millions of men and women around the world who, along with their caregivers, live with the death sentence: Alzheimer’s.

It’s a long way from a mouse to human being. At a European workshop held in London in May 2010, the conclusion of a study of the efficacy of mice was that although mice are among the best models for cures in humans:

“Mice are not always reliable as preclinical models for human disease and the scientific literature is littered with examples of drugs that worked well in animals but turned out to be ineffective in clinical trials on humans. These failures cost the pharmaceutical industry millions of euros.”

Even if the mouse/human model was a perfect match, it would take years and a lot of money before the drug in question became available to human patients. Getting a drug to market is a long process. In some unusual cases, the preclinical process can be completed in two years, but the average is five to seven, at a cost of millions. At the end of that trial period, the FDA or its counterpart in other governments, must give approval for clinical trials which take another five to seven years. On average, it takes 12 years to get a drug to the patient. One out of 10,999 might make it, at a cost of approximately 1.8 billion dollars.

Oh to be a mouse!

Or for that matter, oh to exchange Alzheimer’s for some other disease!

Comparing diseases is an uncomfortable subject. Whichever one we or someone we love has (even the common cold) is the worst at the time. But some diseases do offer more hope than others. The Alzheimer’s Association reminds us that of the top 10 causes of death in America, Alzheimer’s is the only one that cannot be prevented, cured or slowed.

Approximately five times more people die of Alzheimer’s than HIV/AIDS. Yet HIV/AIDS receives 23 times more than Alzheimer’s of the research budget of the National Institute of Health. In the United States, cancer research gets $5.4 billion; HIV/AIDS, $3 billion; heart disease, $1.2 billion; Alzhiemer’s research $566 million. Please note the difference between the billions and the millions — huge.

So, headlines about cures are deceiving. There is no treatment that will alter the course of Alzheimer’s. There is no cure. Everyone diagnosed with it will die, slowly, dignity first, then the body.

My quarrel with misleading headlines has two aspects. First, they give false hope. And most important, they may discourage fundraising. Read a headline like the one quoted above, and why would you write a check for Alzheimer research? Yet the need for research money is greater now than ever. There’s no shortage of ideas or scientists willing to stake years of their lives trying to find a cure. There’s a shortage of funds to finance their projects.

The idea that there might be a cure that did not get to millions of patients, including someone you love, because we failed to fund the project? That should be society’s nightmare. It’s mine.

joan

This post originally appeared on Sutton’s Place.

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