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Joyce and Robin speak with Abbey Meyers, founder of the National Organization for Rare Disorders (NORD), about her new book Orphan Drugs: A Global Crusade.

Abbey’s book is a fascinating retelling of the story of how a group of passionate parents succeeded in getting the Orphan Drug Act of 1983 passed through Congress and into law.

Even more, it is the inspiring story of how a self-described “housewife from Connecticut,” along with others like herself, learned how to influence lawmakers and organize the collective will of people throughout the country who made it happen.

Abbey has left her mark on the world of healthcare for people with rare disorders.  What can each of us do to build upon this work and continue to improve the situation?  How can we make these new treatments accessible to the people who need them?

We are living in exciting times, where new ways to control and cure diseases are being found each day.  Bringing an idea to market as a product is a lengthy and expensive process.  But even once a therapy is approved by the Food and Drug Administration (FDA) in the United States and by similar bodies in other countries, the pricing and marketing of the drug is another question.  What price will be put on the drug? Will the people who need it be able to get it?

Every person in the United State has three people who work for them on Capitol Hill in Washington: each citizen has two Senators and a Congressman elected by them to represent them.  As a voter, taxpayer, and constituent of these people, you have the right to make sure they are informed on the issues that you care about.  Have you told them how important drug pricing is to you?

If each of us called, wrote, or made an appointment and visited our representatives, we could go a long way to educating them on the very real problems we are having in accessing the treatments we and our loved ones need to live.

In this book, Abbey has shared with us how she and other ordinary people undertook to change the system and make things better for their children and families.  You can too.

Please do read Orphan Drugs: A Global Crusade.  Available in paperback from Amazon, or free download from Abbey’s website.  Let’s thank Abbey for the work she has done by carrying it further and making sure that all people can get access to these life-saving treatments.

To find your representatives in Congress, see the top right-hand corner of each of these pages:

Wayne Koberstein, Executive Editor of “Life Science Leader,” wrote an article in March 2016:  “Abbey Meyers: Did the Pioneer of Orphan Drugs Spark Biopharma?”

Article in PharmExec: “Abbey Meyers, the “Mother” of Invention” by Jennifer Ringler