Wednesday, May 15, 2019
Each month, the Cancer Policy Institute profiles advocates who have been engaged in advocacy in their home state, their community, with elected officials, and more. Read on to learn more about our featured advocate for May 2019, and her background advocating on behalf of her daughter. If you are interested in learning more about policy, advocacy, and ways to get involved, sign up to be a part of the Grassroots Network!
Tell us a little bit about yourself.
In March of 2019, I joined the Cancer Support Community as the Senior Director of Policy and Advocacy with the Cancer Policy Institute. I grew up in northern New Jersey as the youngest of three girls with a first generation father of German and Ukrainian descent and an Irish mother whose family has been in the US for many, many generations. Since I was a child, and for reasons I can’t explain, I have always felt compelled to fight against what I perceived as injustice and inequity. I attended Union College in Schenectady, NY and then moved to Washington, DC for law school at George Washington University. I remained in the DC area following law school, but still say I’m from New Jersey.
How did you get connected with the Cancer Support Community?
While working on the development and implementation of a national veterans’ health initiative in my former position, I had the opportunity to collaborate with other professionals committed to advocating on behalf of individuals with disabilities and serious chronic health conditions, including cancer. It was through this work that I learned of the Cancer Support Community. Like so many people, I had a personal connection to cancer through my mother’s chronic myelogenous leukemia (CML). I am intimately aware of the many overwhelming issues surrounding cancer including diagnosis, treatment, care, side-effects, and psychological and financial distress experienced by the patient and family during this most vulnerable of times. The diagnosis, treatment, and prognosis may vary, but most cancer patients and their family members understand the journey all too well. It is my sincere privilege to be working on behalf of the Cancer Support Community.
Did you have experience with advocacy in any capacity before joining CSC? (e.g. legislator meetings, hosting educational events, writing letters or calling, writing pieces for media outlets, posting on your personal Facebook, sharing information with your community, etc.)
In addition to my advocacy as a civil litigator, and prior to being my mother’s advocate for her care/clinical trials for CML, I was an advocate for my daughter and thousands of other children and adults with anaphylactic food allergies. Twenty-five years ago my daughter was born with a life-threatening allergy to all milk protein. Despite relaying her anaphylactic symptoms experienced at 8 weeks and 7 months of age to her pediatrician, it was not until I rushed my unrecognizable one year old baby to the emergency room following the ingestion of less than a quarter teaspoon of yogurt that my daughter was diagnosed with food-induced anaphylaxis.
Avoiding accidental life-threatening exposures caused by ingestion or skin contact with even trace amounts of milk protein required thorough reading of every ingredient on every label of every food product. When my daughter was young, food labels were often incomplete, contained scientific words that were difficult to understand, allowed a catchall phrase of “natural flavors” which could or could not include undeclared milk, and failed to notify consumers about possible cross-contamination through shared manufacturing equipment. Even with the most diligent of efforts, accidental exposures happened which necessitated injections of epinephrine and trips to the emergency room. In addition to the challenges presented in maintaining vigilance over her food, discrimination against children with food allergies was pervasive – with day care centers, preschools, schools, clubs, and camps often refusing to admit severely allergic children or to make reasonable accommodations.
When my daughter’s day care center informed me that she could no longer attend following two different allergic reactions – one triggered from turkey meat they gave her that contained undeclared milk and the second triggered when they accidentally gave her a sippy cup of milk instead of her special formula – I informed the center’s attorney that they were in violation of the Americans with Disabilities Act (which they said did not apply to food allergies), as well as informed the U.S. Department of Agriculture (USDOA) about the center’s unlawful dismissal since the day care center received its milk from the USDOA’s milk program. The day care center quickly reversed its decision.
When I searched for a part time, twice a week preschool for my then three year old daughter, the challenges escalated. My inquiry as to whether a preschool would agree to wash children’s hands after they ate was met with such push back that you would think I had asked them to bathe each and every child. This roadblock led me to secure changes to Virginia’s child care guidelines to require hand-washing both before and after children eat.
While I advocated for change, I still needed to find a preschool for my vivacious 3 year old. Knowing that the ADA did not apply to church-based organizations, I enrolled my daughter instead into my town’s preschool. The town and I collaborated and entered into an agreement to provide reasonable accommodations so that she could safely attend the two day a week, two hours a day preschool. Unfortunately, two families whose children were also enrolled in the program learned of the agreement and contacted the Washington Post to object, resulting in a story on the front page of the Metro section and a series of articles and commentary on NPR News, local television broadcasts, and other media sources. What began as an attempt to impose barriers for my daughter’s preschool attendance quickly turned into the best free public awareness campaign for children with food-induced anaphylaxis.
For approximately fifteen years, I used my experiences and that of others to advocate for improved food labeling, increased education and awareness of anaphylaxis, methods of preventing exposure, implementation of emergency protocols, and non-discriminatory polies.
In what ways have you been involved with advocacy with CSC?
My position as Senior Director of Policy and Advocacy with the Cancer Policy Institute offers me the opportunity to voice the concerns and priorities of cancer patients and their families through official comments, proposed policies, and collaborative partnerships.
Is there one issue you are particularly passionate about?
I am passionate about seeking equal access to the best available treatments for all people notwithstanding their ability to pay.
What is one tip or piece of advice you’d like to share with others who are interested in becoming an advocate?
Always remember that you are an expert and your voice is a valuable tool to help yourself and others confronting similar challenges.
Tell us something fun about yourself—any hobbies, interests, or fun facts?
I love outdoor adventures – hiking, fishing, skiing, boating, and horseback riding – and traveling to places near and far. My three children and my daughter’s son (referred to by others as a grandson) are often my partners in crime!