Abbey Meyers’ memoir “Orphan Drugs: A Global Crusade”
is now available and you can read it for free at www.abbeysmeyers.com/
Abbey Meyers is the founder and past President of the National Organization for Rare Disorders (NORD) and was instrumental getting the Orphan Drug Act of 1983 passed.
Abbey has also served as the consumer representative on the National Commission on Orphan Diseases
(1986-89), the NIH Human Gene Therapy Subcommittee
, the NIH Recombinant DNA Advisory Committee
(RAC), the FDA Biological Response Modifiers Committee
, and the HHS National Human Research Protections Advisory Committee. She was also an
Honorary President of the European Organization for Rare Disorders (EURORDIS) and currently hold the honorary title of President Emeritus of NORD.
While Abbey retired in 2009, her crusade to give people with rare diseases an equal opportunity to obtain treatments, continues to exist and inspire the entire rare disease community.
In a press release
, Abbey stated:
“One day, I wish everyone dealing with the pain and misery of the 7,000 rare disorders will have access to a treatment that will alleviate their symptoms. The reason I wrote this book was to show that individuals did not have the political power to solve this problem, but working together rare disease patients represent millions of people who can be a formidable political force. And the accomplishments of patient led charities in the USA served as a model for the rest of the industrialized world. Together we became the “Global Crusade” for people with rare disorders.”
And to truly realize the global nature of her crusade, the book was made possible by a grant for the Canadian pharmaceutical company, Medunik
, which specialize in bringing orphan drugs to the Canadian population.
Abbey’s journey back in the 1970s, long before the passage of the Orphan Drug Act of 1983. In her memoir, Abbey noted the struggles she had in getting a proper diagnosis for her son (eventually he was diagnosed with Tourette’s syndrome) followed by the additional struggles to get him a treatment option that was safe and effective. And when she finally had a drug that was effective (pimozine), the company stopped supplying it since it was not effective in the population it was being studied for (a more common condition). This episode led Abbey on a crusade that would change the entire rare disease community.
From the book Orphan Drugs: A Global Crusade
In the early 1980s, the investment community generally believed that a “blockbuster” drug was a pharmaceutical that brought in $100 million in annual sales. Today, a “blockbuster” drug is a medicine that sells $1 billion or more in a year, and several orphan drugs are in this category not because their market is big, but simply because of their high prices.
But during the time my son was treated with pimozide, orphan drugs did not have that potential. If the market for a TS medication could only be sold to a maximum of 100,000 people in the United States, companies believed it would be unlikely that the sales of the drug would exceed the costs of developing it. So the pharmaceutical industry simply ignored orphan drugs. Even when an academic scientist had already discovered a treatment for a rare disease, no pharmaceutical company would manufacture it.
At the time, I was not yet versed in the problem of orphan drugs. Staring at Dr. Shapiro in amazement, I could only say, “You’re kidding.”
“No,” he replied. “There are many things to kid about, but not orphan drugs.”
I was stunned. But before I had even left Dr. Shapiro’s office, I’d already vowed to do something to reverse this travesty – to face down this injustice and find a solution not only for Tourette syndrome, but for all rare diseases.
To download your free copy, visit www.AbbeySMeyers.com
. A paperback version of the book can be ordered from Amazon.com