EXCLUSIVE: Why Are Teen And Young Adult Cancer Patients Still Not Getting The Research And Support They Deserve?

When Allison Rosen (above) was diagnosed with colorectal cancer at age 32, it came as a complete shock. She had no idea someone her age could be diagnosed with this type of cancer, which most Americans still associate with people who are much older.

It was an obviously daunting challenge for Rosen, physically and emotionally. But she bravely pushed on, went through treatment, and is now in remission.

Rosen, a trained scientist who worked for years in a lab, now works in cancer prevention and is a passionate advocate for her fellow adolescent and young adult cancer patients (AYA’s). 

“I believe there needs to be more research and more attention given to teens and young adults with cancer,” says Rosen, who turned 41 last month.

“The physical as well as psychological aspects of being diagnosed with cancer just as your life is beginning can be devastating.” 

Rosen is intensely focused on increasing awareness of the unique challenges faced by adolescent cancer patients ages 15 to 39.

And she’s not alone.

More than 50 cancer foundations, cancer hospitals and more have banded together this week to participate in a high-profile social media barrage to let people know what it really means for a teen or young adult to be given a cancer diagnosis.

The dynamic coalition staging this ambitious media campaign includes: 

Teen Cancer America, Stupid Cancer, Memorial Sloan Kettering Cancer Center, Young Adult Survivors United, UCLA Health AYA Cancer Program, The Ulman Foundation, MD Anderson Cancer Center, CANCERcare, USC Norris Comprehensive Cancer Center, Tigerlily Foundation, Athletes Fighting Cancer, b present, Norton Cancer Institute, Elephants and Tea, cervivor, and many more. 

Each day this week, the group is featuring a different “slider” social media post to inform the public about AYA Cancer.

The idea is unambiguous:  

Teens and young adults still too often get the short end of the stick when it comes to cancer care, and it has to change, for the sake of us all.

Why does this age group need and deserve more attention? 

 

There are multiple compelling reasons.

First of all, teens and young adults are diagnosed with cancer at later stages than any other sector of the population.

Teens and young adults are also the sector of cancer patients who are most often misdiagnosed. 

Teens and young adults also get by far the fewest research dollars thrown their way, the least amount of clinical trials, and the least amount of space in cancer hospitals.

The young adults age group is also the least likely to have health insurance. While kids and teens are typically covered under their parents’ insurance, young adults are often not covered. And many of them are just not even thinking about cancer or any other serious illness.

Teens and young adults also generally do not get tested for cancer. It’s simply not on their radar, or their doctor’s, if they have a doctor.

But the sad and chilling fact is that cancers in young people are alarmingly on the rise in America.

In a recent study of cancer trends among adolescents and young adults in the US, researchers reported a shocking 30 percent increase in cancer diagnoses among individuals fifteen to thirty-nine years old between 1973 and 2015. 

Despite the fact that cancer in AYA’s is alarmingly increasing, data on the epidemiology of cancer in AYAs are still inexcusably limited.

AYA’s Need Their Space

And lest we forget, there are the psycho-social aspects of being diagnosed in this age group, as well, and just where this age group is typically being treated.

It’s insulting for someone who is 16 years old to be relegated to the pediatric cancer ward next to a very young child.It is also unfair for for a 23-year-old cancer patient to be placed in the same treatment room as a person who is two or even three times his or her age.

Neither is optimal. Teens and young adults want and need their own space. A treatment environment that is age-appropriate is something every cancer patient wants and deserves.

That’s where Teen Cancer America comes in. Teen Cancer America (TCA) is a non-profit organization that works tirelessly every day to support adolescents and young adults with cancer, including establishing spaces in hospitals that are exclusively designed for this age group. 

Simon Davies, CEO of TCA, says this week is an important one for young Americans with cancer.

"Each year the AYA Cancer Awareness Week coalition grows and reaches more people,” Davies says.

“We need everyone to get behind this initiative and demand change to improve the treatment experience, services, and research for this largely forgotten group of teenagers and young adults with cancer."

Roger Daltrey, legendary lead singer of the Who, is co-founder with his Who bandmate Pete Townshend of both Teen Cancer America and Teenage Cancer Trust in the UK.

"AYA cancer awareness is the most important week of the US calendar,” Roger says. 

“We need everyone to understand the unique needs of young people with cancer and support these advocating charities in their vital work to save young lives."

Stupid Cancer Steps Up

Another leader in the AYA cancer coalition is Stupid Cancer, whose CEO, Alison Silberman, is proud that so many disparate organizations have come together for this week's awareness drive.

“These organizations have come together for a common cause,” says Silberman, who helped create the media campaign.

She notes that each day this week will feature a different “slider” social media post to inform the public about AYA cancer.

The goal is for this information to be shared as widely as possible. What is especially impressive about this coterie of organizations working so closely together is the fact that many of them compete with each other for finite dollars and media attention.

Silberman says there is nothing but sincere collaboration going on here. “We all support each other. We all want the same thing,” she says.

The 411 on Teen and Young Adult Cancer

According to the American Cancer Society, approximately 90,000 people ages 15-39 are diagnosed with cancer each year.

Every hour in America, a young person between the ages of 13 and 25 is diagnosed with cancer.

Teens and young adults with cancer are usually treated in children's units (pediatrics) if they are teens or treatment with older people (medical oncology) if they are older young adults.

The average age for pediatrics is 6 and average age in adults is 60.

Entering high school or college, critical exams, career pathways, more significant relationships. These are just a few of the challenges of this age group. Cancer can disrupt and adversely affect all of these, sometimes causing irreparable damage. 

Peer groups are of course key at this age. Losing contact with friends and being treated where there are no other people of the same age is depressing and isolating. 

In some cancers affecting young people, such as bone cancer, there has been little progress or improvement in survival in 30 years.

Compare that to leukemia where survival has improved from 20% to 80%.

There has been a paucity of research and clinical trials in the AYA field. Their outcomes and survival have made inferior progress compared to older and younger populations.

This must change. 

Teens and young adults are old enough to know what is happening to them but often they are understandably not mature enough to cope with all of the unexpected and unwelcome changes and challenges.

It is not uncommon for a young person to protect his or her family from how distressed and frightened he or she may be.

Issues such as body image and loss of fertility are also complex and difficult things to navigate during cancer treatment.

Losing hair, fatigue, weight loss due to cancer or weight gain due to some treatments, surgery and scarring are all hugely important issues for a teenager who is just discovering his or her own identity.

A young person being told they may not be able to have children can have distressing long-term effects. The simple act of deciding when or how to tell a boyfriend or girlfriend that this is a possibility can be a harrowing experience.

Simon Davies of Teen Cancer America says his organization plans to be the antidote to much of the above by developing specialized facilities, services and teams that will improve the treatment experience of young people, their outcomes and their survival. 

Teenagers and young people should be treated with people of their own age, he notes. Just as they are in schools, universities and youth groups. Even the criminal justice system treats teenagers differently.

The facilities that Teen Cancer America creates are vibrant, teen-friendly environments geared specifically to meet their needs. They are based on the successful model developed by Teenage Cancer Trust in the UK over the past 25 years and which are now a main stream part of cancer services over there.

These spaces can include social areas, kitchen/dining areas, computers, gaming systems, music systems and digital lighting. They may have pool tables and jukeboxes installed to create a strong youth centered environment. 

Having both facilities and expert teams in place at cancer hospitals will inevitably enable researchers to focus on this age group and study both the effect of the cancers on them and the effects of the treatments.

Teen Cancer America developed the first US specialized facility at UCLA. Currently there are 42 Teen Cancer America partner programs and eight programs that include facilities.

Some of the hospitals with whom Teen Cancer America is currently working are UCLA (CA), MSK (NYC), Yale (CT), Children’s Hospital of Philadelphia, Dana Faber (MA), Stanford (CA), Moffitt (FL), Baylor Scott and White, Fort Worth (TX), University of Chicago (IL), UH Hospitals/Seidman Cancer Center (OH), Duke (NC), UNC (NC), Children’s Hospital of Minnesota (MN) Lurie (IL) North Western (IL), UC Davis (CA), James (OH), and Nationwide (OH).

Allison Rosen Is Living Her Life

 

Allison Rosen during treatment

Meanwhile, Allison Rosen is getting on with her life and continuing to inspire and inform her fellow cancer patients and survivors.

“I work in cancer research, and now in cancer prevention,” she says . “I was living my life, having a great time and not thinking I was on the clock to get married or have kids. When I was first diagnosed it was overwhelming. But there is help, and hope.”

Rosen asked her oncologist if there was another patient or group of patients around the same age that she could talk to for support at her hospital, MD Anderson.

“I went to one support group, but it was older adults, and they just do not have the same needs,” she says. 

Rosen played an early role in the development of the AYA support group at MD Anderson.

“They did not have a young adult support group, so I brought that up in a meeting,” she said. “They took it from there and created a young adult support group. I am in remission, but still attend to this day.”

The simple message, Rosen says, is that you will need emotional support for rest of your life, people you can connect with.

“That support group saved my life,” she says. “I felt alone, I didn’t understand, and these perfect strangers have turned into some of my best friends.”