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Cancer Wasn’t Part of the Plan… Until Now

 

katehoughtonby Kate Yglesias Houghton, President & CEO, Critical Mass: The Young Adult Cancer Alliance

 

Growing up my family spent time teaching us about the obligation to serve others.  In their eyes, people of action and empathy were to be admired. In college, it was learning about our political process that made me realize that “service to others” was at the core of our government. Laws to effect change.  Policies provide protection.  A Thanksgiving basket was an act of service but it was not an act of change.  By the time I was wrapping up my final courses I knew how I would serve others as a career:  work in Washington, DC.

 

For the last ten years I have been behind the scenes planning and strategizing about ways to expand the American dream to more people.  I had a front row seat to history as the United States elected and then re-elected our first African-American president, ended wars and reestablished diplomatic relations throughout the world, passed laws to protect Americans from discrimination, and expanded quality, affordable health care coverage to millions of Americans.

 

During my free time, I organized friends, family, and co-workers for Susan G. Komen races to fight breast cancer, “ran” (read: walked quickly) with the Leukemia and Lymphoma Society’s Team-in-Training, and contributed any time someone needed support for a Dance Marathon or St. Jude’s Children Research Fund happy hour.  In 2009, I helped found the Congressional Women’s Softball Game to raise funds for the Young Survival Coalition (YSC), an organization dedicated to supporting young women breast cancer patients and survivors.  The Game was a labor of love.  Our first year was a mixture of dirt fields, learning the real rules of softball, folding paper programs designed on my laptop, and crossing our fingers that people would show up.  After the last pitch was thrown, more than 500 people had attended and we raised $50,000.  The Game helped build awareness in DC that young women can and do get cancer but more importantly, in just eight years we were able to raise more than $850,000 for YSC to spread that message across the country.

 

Two years later, I joined President Barack Obama’s re-election campaign which took me to 20 states and 80 cities in just 10 months.  I was sleep deprived, living off fast food, and drinking more caffeinated products than one body should physically be able to take in.  At 27 years old I was doing everything I had set out to do and having the time of my life.  Then the flu, or what I thought was the flu, sent me to the hospital.  For the first time in my life I was a patient.

 

Nowhere in my plan did I account for the time, resources, and emotion of a cancer diagnosis.  Not only are you not invincible but you can’t do anything to help yourself.  You can’t legislate, fundraise, or talk your way out of a cancer diagnosis.  Trust me, I tried.  All you can do is allow others to serve you and appreciate that those “others” are highly educated and specialized physicians and nursing staff.

 

On March 22, 2012, I was diagnosed with acute myeloid leukemia and immediately began in-patient chemotherapy at Johns Hopkins Hospital.  During those first few weeks in the hospital the Supreme Court heard oral arguments on the constitutionality of the Affordable Care Act – a piece of legislation that I knew all too well.  As a former U.S. House of Representatives staffer, my responsibility was preparing the schedule and briefs for a Chief Deputy Whip who was tasked with counting votes and ensuring the law passed.  I will never forget the moment watching the news from the intensive care unit:  the Supreme Court upheld the Affordable Care Act with a 5-4 decision.  For the first time, I saw the power of public policy in action; one piece of legislation, one vote, one decision changing the world.  My world.

 

After I left the hospital I wanted to resume my old life.  I attended two national political conventions, worked on countless local and national campaigns, and again traveled the country.  But “service to others” began to take on a different meaning.  Putting on my first “survivor” shirt, I realized that yes, I had beat cancer and no, not everyone does.

 

I started by researching what it meant to be a “young adult” with “cancer.”  At first, I wanted to better understand my long term risks, my chances of survival, and ultimately what my life would be like in the future.  What I actually learned was that people like me diagnosed between 15 and 39 years of age have not experienced the same medical advances in their treatment protocols or care plans as older and younger adults with the same diagnosis.  It is entirely too common for someone in this age group to ask about their prognosis and get the same answer: “We don’t know.  You are too young to have cancer.”

 

Luckily during my research, I also found Critical Mass: The Young Adult Cancer Alliance, a community-powered advocacy organization made up of providers and survivors on a mission to transform the care and treatment of adolescents and young adults impacted by cancer.  I was immediately drawn to their commitment to “serving others” in their local hospitals and cancer centers and offered to volunteer my policy and political expertise.

 

In 2013, Critical Mass asked me to speak at their annual conference about my personal cancer experience.  It was the warm reception from an audience of survivors and advocates that confirmed my new mission – be a voice to bridge the gap between adolescent and young cancer patients and survivors and the government policy makers in Washington, DC.  I started actively talking about my cancer experience, using words like “chemo” and “ports” to better connect my story to my professional and personal work.  Talking about my story was, and still is, difficult but I was amazed how many people came out of the woodwork and told me about their cancer diagnosis or what it meant to lose their 32-year-old mother as a child.

 

Then I got another call from Critical Mass:  Can we transform the care and treatment of adolescents and young adults impacted by cancer from Washington, DC?

 

Yes, of course!  Adolescents and young adults need an organization like Critical Mass speaking to policy makers every day to ensure our cancer experiences are heard loud and clear during each and every policy debate.

 

When the Board of Directors asked me to take on the role of CEO to expand the Critical Mass mission in Washington, I accepted in a heartbeat.  Finally, my personal cancer experience and my professional expertise perfectly aligned and I would be able to serve the 70,000 adolescents and young adults diagnosed with cancer each year in the United States and the millions who are living as survivors.

 

Today more than ever adolescent and young adult cancer patients and survivors need a seat at the federal policy table.  No one predicted that Donald Trump would win the presidency and no one was truly prepared for defending the Affordable Care Act (ACA) full-time from repeal.  Debate over issues we care so passionately about can be challenging to watch but the debate is what makes this country what it is.  Every voice has a place in the policy decisions that are made and every voice has a fundamental right to be heard.

 

Critical Mass is ready to lead the way and defend life-saving provisions that eliminate barriers our community faces to survive and thrive after a cancer diagnosis.  Our community has the data and research to support public policy initiatives, we have the personal stories to make it real for the policymakers, and we have a coalition of experts who have been creating change from the ground up for more than a decade. Stories from our past, present and future AYA cancer support organizations and survivors are key to changing federal policy making.

 

Join us on our mission to transform the care and treatment of adolescents and young adults impacted by cancer.    Text CRITICAL to 82623 to get up to the minute alerts or go to criticalmass.org to learn more about our public policy agenda.

 


 

Kate Yglesias Houghton is the President & CEO of Critical Mass: The Young Adult Cancer Alliance – a community-powered organization on a mission to transform the care and treatment of adolescents and young adults diagnosed with cancer or living as survivors.  Kate, an acute myeloid leukemia survivor diagnosed at age 27, is leading the organization’s transition to full-time legislative advocacy based in Washington, D.C. She is a Florida native and earned a Bachelor’s degree in Political Science from Florida International University.  She also holds a graduate degree from George Mason University in Public Policy.

 


 

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