This story first appeared in the Fall 2015 issue of Alpha-1-To-One Magazine.
Miriam O’Day and John Walsh first met in the late 1990s, when O’Day was vice president of the Immune Deficiency Foundation (IDF). They worked together for years on blood safety issues that were critical to both of them, since the immune deficiency and Alpha-1 communities both depended on human blood plasma for their therapies.
When O’Day left the IDF in 2000, Walsh, co-founder, president and CEO of the Alpha-1 Foundation, contracted with her to serve as the Foundation’s senior director of public policy.
“Miriam has done the impossible,” Walsh said, introducing her as keynote speaker at the 2015 Alpha-1 National Education Conference. “She built a special, effective relationship called a liaison relationship with the FDA (Food and Drug Administration) and the NHLBI (National Heart, Lung, and Blood Institute). She engaged in an open relationship with CMS (the Centers for Medicare and Medicaid Services) on issues such as supplemental oxygen and access to pulmonary rehab. She’s carried the torch for us on regulatory affairs – the best patient advocate any community could possibly have.”
O’Day has been deeply involved in many key achievements for the Alpha-1 and rare disease communities.
- The 2002 “March on Washington” that both persuaded Medicare to cancel planned reimbursement cuts for augmentation therapy, and helped to win passage of the Rare Disease Act that led to establishment of both the Rare Lung Disease Consortium and Cholestatic Liver Disease Consortium – both of which invest research dollars into Alpha-1.
Miriam O'Day, right, recognized by John Walsh, left, Chip Withers,
Ed Schuck and Karen Fraser for her work on the 2002 March on Washington
- The Genetic Information Nondiscrimination Act (GINA), which bans the use of genetic information in health insurance and employment decisions.
- The CMS decision that Medicare would cover pulmonary rehabilitation.
- The U.S. Department of Transportation ruling that required all airlines operating in the U.S. to allow passengers to take approved portable oxygen concentrators with them on the plane.
- The Patient Notification System to notify patients of any recalls of blood products they might be using.
- O’Day pushed the idea of a Foundation magazine, which she described as “a People magazine for Alphas.” That became this magazine, Alpha-1-To-One, and she was our first editor. (In 2008 Miriam was featured on the cover of Alpha-1-To-One Magazine.)
- For years, O’Day represented many organizations besides the Foundation: they included the former Alpha-1 Association, the COPD Foundation, the U.S. COPD Coalition, NTM Info and Research, and the American Association for Respiratory Care.
Effectively, she was the voice in Washington for people with lung diseases and the allied health professionals who care for them – respiratory therapists.
Miriam O'Day at the 2015 Alpha-1 National Education Conference
O’Day says the Alpha-1 community has achieved “astounding” things. The Foundation’s investment of more than $60 million in research and programs, and a disease management program like AlphaNet’s, are both “nearly unheard of in rare disease communities,” she says. She also notes that “Alphas are living longer lives” – a median of 60.3 years, 65.5 for those who never smoked, in a recent study – compared to the 54-year average lifespans found before the Foundation existed.
In 2015, O’Day resigned after nearly 15 years in the post.
O’Day is now in the middle of creating a new life for herself. She has relocated from the Washington, DC area, where she had spent her entire life, and now is living in downtown San Francisco with her “significant other,” doing what she calls “a life reboot.”
Watch her presentation from the 2015 Alpha-1 National Education Conference.