Oct 27, 2014
By Alana Williams, Staff Writer
Matthew Zachary is an 18-year young adult cancer survivor and the founder and CEO of Stupid Cancer, a nonprofit organization that creates programs and services to empower those affected by young adult cancer. Stupid Cancer is the nation’s largest support community for this often underserved demographic of patients with cancer. In this interview, Mr. Zachary discusses his experiences founding the organization as well as his advice for early-career oncologists.
At what point did you decide to create Steps For Living (which later became Stupid Cancer)? Was it something you conceived while you were being treated for cancer, or did it come out of your experiences as a survivor?
MZ: It was many, many years after my diagnosis that I conceived of Steps for Living. I was diagnosed in 1995, treated in 1996, and kind of foraged through the remains of my life in the late 90s. I hit my 5-year remission in 2001, and around that time I finally met another young adult patient with cancer. I had gone completely alone all those years, believing I was the only college student who ever got sick. In meeting that other patient, who ultimately became a good friend of mine, he introduced me to the world of cancer advocacy, and he encouraged me to think about starting a charity.
I launched Steps for Living in 2003and it marinated until 2007 when it became the I'm Too Young for This Cancer Foundation, AKA "i2y". i2y wascreated to fulfill the strategic plan of the public health report Closing the Gap: Research and Care Imperatives for Adolescents and Young Adults with Cancer, which the Centers for Disease Control and Prevention put out with LIVESTRONG and the National Cancer Institute about the outcome disparities facing young adults with cancer. That was a watershed policy document that catalyzed the young adult cancer movement.
What are some of the unique challenges faced by young adults with cancer and young adult cancer survivors?
MZ: The unique challenges are about age relevancy and not about disease type. This is very similar to the pediatric oncology philosophy in that it is about getting treated age-appropriately from a clinical, psychosocial, academic, and sociologic perspective. Young adult patients with cancer are not any more special than anyone else who gets sick, but when a person is diagnosed in their 20s or 30s, they face a unique set of factors that are hard enough for a young adult who is not sick. The first thing that comes to mind is fertility, and the frequent lack of knowledge about how some cancer treatments pose a fertility risk. Then there are other issues suchas parenting young children after a recent diagnosis, maintaining a job, going back to school, and dealing with financial debt and insurance—these are all hard enough to deal with when you're well.
Young adult patients with cancer are not 8 and they're not 80, which can sometimes lead to challenges not only in being treated age-appropriately, but in finding peers who are going through the same experience. Young adult patients with cancer don't want to go to a support group with 80-year-olds who say, "You poor thing." That is the substance behind why Stupid Cancer exists.
What are some of the biggest improvements you have seen in young adult cancer and survivorship care since Steps for Living's creation in 1996?
MZ: From a policy/recommendation perspective, there are implementations now that didn't exist seven years ago—some that even came about as recently as a year or two ago. I would say the top improvement is the National Comprehensive Cancer Network's Caring for Adolescents and Young Adults guidelines. This was a huge milestone. Now that the guidelines exist, the next hurdle is making sure they are followed, accounted for, and managed.
Another major milestone is that there are now close to 40 hospitals in the country that have some version of a young adult–specific program. Whether it's a dedicated clinic, hospital, ward, or follow-up plan, that's a big breakthrough, and the next step will be to see how many hospitals have improved outcomes for young adult patients with cancer from these efforts. There is now an association that focuses on young adults with cancer, called the Society for Adolescent and Young Adult Oncology (SAYAO), whose founding members include several membersof ASCO. The organization puts out important white papers and research, among other efforts.
In addition, more young adult patients with cancer are being made aware of resources than ever before. We know how many patients we touch every year, and that number keeps going up—from people who attend our conferences, to people we're reaching on social media outlets, to people reading our newsletters. There has been significant progress in outreach and awareness, and also from a pop culture prospective. Look at the book and film The Fault in Our Stars, the movie 50/50, and the show Chasing Life. Young adult cancer is a pop culture phenomenon now, and that's an anthropologic win. I look at progress from so many different lenses, whether it's pedagogic, academic, sociologic, pop culture, or advertising, and the huge improvements in these areas are what I'm most proud of.
What areas do you feel are mos timportant for the newest generation of oncologists to focus on?
MZ: With more discoveries in genetics and genomics, and with newer forms of screening coming out, I think risk assessment is the number one area that I would like to see the new generation of primary care physicians and oncologists understand. It's the responsibility of the primary care physician to understand about risk and screening because if a patient is at the oncologist, they're probably already sick. Now that more and more genes that are associated with specific types of cancer are being discovered, this is the new way for providers to talk about risk. My story was that I went back to my primary care physician's office 12 to 13 times, and they didn't take me seriously. If a physician has a young patient who continues coming back for visits, there's probably something really wrong with that person. I think it may be easier for early-career oncologists to be less dismissive of warning signs like that when they are the age of the patient who they are treating.
What advice do you have for early-career oncologists caring for young adult patients with cancer who might be close to their own age?
MZ: This is extremely important to me personally. There was a survivor pane at a recent adolescent and young adult cancer conference that I attended, and four of the people on the panel were oncologists who were also young adult cancer survivors. Talk about a niche group. A lot of young adults who get sick are now going into medicine, when they may have not chosen that career path otherwise. And although the majority of people going into medicine have not had cancer, many have been affected by the disease through friends or family who have been diagnosed. I've had opportunities to speak with young adults who are residents, interns, and fellows, and they understand cancer in a way that other generations of academics sometimes don't—as a generation, they have grown up in a different culture of health, wellness, and technology and may be more accustomed to integrating this into their practice. Early-career oncologists may also find that it's easy to have empathy for young adults with cancer because they're in the same stage of life and, apart from the disease, are dealing with similar issues.
For an early-career oncologist treating a young adult patient with cancer it is age first, disease second. Early-career oncologists know how they do and do not like being treated based on their own experiences of going to the doctor, which gives them an advantage in knowing how to treat these patients age-appropriately.
My message to early-career oncologists is we're here for you. We want to be your patient advocates for the entirety of your career.