Magazine article The Exceptional Parent

The Legacy of a Housewife from Connecticut

Magazine article The Exceptional Parent

The Legacy of a Housewife from Connecticut

Article excerpt

[ILLUSTRATION OMITTED]

Abbey Meyers recently announced that she would soon retire from the position she has held since 1983--President of the National Organization for Rare Disorders (NORD). The following story appears in the current issue of the NORD newsletter, Orphan Disease Update. Since it was written, Abbey was honored by PharmaVoice magazine as one of the 100 most influential people in the life sciences industry today, on the basis of her work in patient advocacy.

She's received some of the highest honors and accolades in her field, but Abbey Meyers still thinks of herself as a housewife from Connecticut. Like so many others who originally just set out to help a loved one, Abbey looked beyond her own family's needs and saw broader issues, affecting all people with rare diseases, which needed to be addressed.

As a result, she has spent the past 29 years speaking, writing, traveling, and testifying on behalf of the more than 25 million Americans with rare diseases. And, as the president of NORD, she has touched lives around the world.

Now Abbey has decided it's time to retire and let others carry on the process that she and her generation began. She'll still be involved in significant ways. She plans to sit in her rocking chair on the porch of her retirement home in Connecticut and write. She will continue to follow issues affecting people with rare diseases closely and will provide advice and counsel to those fighting the battles on the front lines.

The Orphan Drug Problem

Abbey's odyssey began with an experimental drug that worked but didn't have market value. One of her sons, who had a rare disease, was given an experimental drug that appeared to be helping him. Then, abruptly, the family learned that the drug had been discontinued.

"We were told it was no longer available... that the problem was that it was an orphan drug," said Abbey. The manufacturer, realizing the drug was not going to be profitable, had pulled it from development.

First, Abbey approached the company but without much success. Then she began to call people at other patient organizations--she was working for the Tourette Syndrome Association at the time--to see if they had experienced similar problems. One of the people she called was Marjorie Guthrie, widow of the folksinger, Woody Guthrie, and mother of Arlo. Marjorie was affiliated with the Huntington's Disease Association because that disease had claimed her husband's life.

"Marjorie said there was no treatment for Huntington's disease but that someday there would be. She was able to see that this was a problem affecting all of us that had to be solved," Abbey says.

Several of the people Abbey called made trips to Washington to educate Congress about the "orphan drug problem" and the fact that companies couldn't afford the expense of developing treatments for rare diseases unless those treatments also proved effective against more common diseases. Their profits were calculated on the size of the potential market, not on the medical needs of patients.

But no one was listening. Congresswoman Elizabeth Holtzman introduced early orphan drug legislation, but her bill wasn't realistic, Abbey says. It didn't address the industry's need to make a profit. "You have to look at the industry, find out what makes it tick, and find an incentive," Abbey says.

Aside from Holtzman's early effort, few in Congress were interested initially. Then in 1980 a Congressional hearing was convened by Congressman Henry Waxman (D-CA). Abbey and a young man named Adam Seligman from California testified at the hearing. Aside from Waxman and a few members of his committee, there was almost no one in the room. "We were talking to ourselves. No one was there to hear us," Abbey says.

No one, that is, except one reporter in the back of the room. He was there because Adam Seligman was from California, and the reporter worked for the Los Angeles Times. …

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