Adolescents and young adults face lowest survival rates
They are patients in the prime of their life – adolescents, college students, newly minted professionals, newlyweds and young parents. Then comes cancer. Yet what makes their diagnosis particularly fraught with peril is that survival rates for adolescents and young adults haven’t improved for most cancer types since 1975.
“I blame the professionals,” Archie Bleyer, MD, said bluntly. Bleyer is an oncologist who was one of the first to sound the alarm about this vulnerable cancer population. That was in 1995, when Bleyer published his early research on adolescent and young adult (AYA) cancer and when his career focus shifted away from pediatric oncology. Today, this former chair of pediatrics at the MD Anderson Cancer Center in Houston directs a program called DEFEATcancer at the St. Charles Regional Cancer Center in Bend, Ore.
“We’ve been very, very successful in children, and we cure now almost 80 percent of children with cancer,” Bleyer said. “But once you get to the age of 15 and above, our success rate is not that good. In fact, the irony is that we’ve made more progress in older adults and children than this population in the middle.”
Now the American Society of Clinical Oncology (ASCO) is working to change that. ASCO has partnered with the Lance Armstrong Foundation’s LIVESTRONG initiative to launch Focus Under Forty, an education curriculum for doctors. The partnership has also begun production on a new video series for AYA cancer patients called “Moving Forward: Perspectives from Survivors and Doctors.”
The series is 13 pairs of videos. Each pair features a video of an AYA cancer survivor telling his or her story and an accompany video by a physician. Topics include fertility, fear of recurrence and dying, medical expenses and health insurance, body changes, dating and sexuality, diet and exercise, family and friends, pain and swelling, and school and work. The videos are available at www.cancer.net and on the Foundation’s YouTube channel.
ASCO President Michael P. Link, MD, said the Moving Forward series provides “a well-rounded perspective and practice guidance to use right away.” What’s more, it’s reaching these patients via social-media avenues that they embrace. People in this age category “don’t pull any punches,” he said, and their peers are credible sources of information.
“Adolescents and young adults are in some ways an underserved population. They are in-between,” said Link, a pediatric oncologist at the Lucile Packard Children’s Hospital at Stanford in Palo Alto, Calif. “This is a very isolating experience for people in this no-man’s land, where their needs aren’t cared for – or they haven’t been in the past.”
Link then reeled off “a confluence of factors” that contributes to this healthcare gap. The first is access to care. For many of these patients, they have transitioned off their parents’ health insurance, yet don’t have insurance of their own. Add to that the bulletproof mentality of the young and the result is a delay in detection and treatment that gives cancer a window of opportunity. “This is clearly one of the obstacles of taking care of them,” Link said.
When it comes to clinical trials, AYAs are behind the eight ball. “We have data to suggest that this is the group where there is the lowest participation rate in clinical trials, in part because there are few trials available for them and they’re falling in the cracks,” Link said. Also, not as much funding is directed at this group of patients and their specific kinds of cancer and needs.
There is yet another complication – the biology of AYA cancers. At the younger range of AYA cancer patients, pediatric oncologists are still their best bet, Link said. Yet, while the cancer may have the same name as the cancer being treated in a 6-year-old, how the cancer reacts may be different. “Some of this reflects the difference in the biology of the tumors that occur in older patients, and we haven’t studied that enough to really understand why this biologic difference occurs,” Link conceded.
What makes matters worse is that AYA patients may be better off hospitalized in a pediatric center. In fact, Link said his pediatric facility treats cancer patients as old as 30, depending on their type of cancer. Obviously, this is awkward for both patient and physician. “It’s a little bit unnerving for a pediatrician to treat someone with a spouse and children of their own,” he said. Nonetheless, research data support this approach, he added, because the physicians are more experienced with the cancer and more comfortable with the protocol and the drugs.
It all has to do with the “evolution of society,” Bleyer believes. “It’s a turf problem, a natural result of societal division, and it has created a challenge for us to try to create a new discipline that works specifically on the AYA group,” he said.
Bleyer likened the progress being made in AYA cancer to the current economy and a “trickle of evidence” that holds promise. It’s true that more AYAs are being enrolled in clinical trials devised to discover new methods of diagnosing, evaluating and treating cancer in their population. “Now that we’ve seen this uptick, I’m very hopeful we’ll start improving their outcome,” he said.
In addition, residencies and fellowships are emerging that concentrate on AYA cancer, and the interest has been generated by future doctors themselves. “They saw the need, they understood the problem,” Bleyer said, “and they went to the institution and asked to train in this field.”
That, he said, is “a groundswell bandwagon.”