First I will define the AYA, or Adolescent and Young Adult population. According to the Report of the Adolescent and Young Adult Oncology Progress Review Group (AYAO PRG), AYA patients are 15-39 years old at the time of cancer diagnosis. This group of patients have biological, psychosocial and economic issues that are different from children and older adults, yet there has been little advocacy for this group until recently. Additionally, the five year survival rates for AYA patients has lagged far behind those of childhood and older adult patients. The AYAO PRG states:
“While dramatic survival improvements…have been achieved in patients diagnosed at age 15 or younger and steady improvement has been made against a number of cancers common among those over age 40, little or no progress has been seen in the AYA population… In fact, among those aged 25 to 35 years, survival has not improved in more than two decades.” (p. 4)
There are many factors contributing to this lack of progress, one of which is the limited access to adequate health insurance in this patient population. As many of you experienced, your parents coverage stops at 19 if you are not in school and at 23 even if you are still a full time student. In a survey reported by the National Center for Health Statistics and the Centers for Disease Control a whopping 61.6% of all 42.1 million uninsured Americans ages 18-64 fall in the AYA range of 18-44 years (referenced here). Even if you are lucky enough to have health insurance it’s usually sub-par. How many twenty-somethings do you know that have really good health insurance? When I was in grad school our affordable options were nothing more than catastrophic coverage. Others of us are just starting out our careers and our benefits are not substantial yet.
You can imagine that if you have little to no health coverage that you rack up debt quickly once you are diagnosed with cancer. Eventually you have to pick and choose which procedures you have and how many office visits you make simply due to your funds. I’ve been there before with routine health care, and even then it’s stressful. I cannot imagine what it is like to deal with cancer and those financial decisions at the same time.
I believe that AYA patients are not as compliant with routine and follow up visits as populations with better coverage because of the financial strain. This is a major reason, in my opinion, that this patient population has such a low survival rate. They are not getting the care they need to fight the disease because they cannot afford it. If they do beat cancer, they then have trouble for the rest of their lives finding adequate coverage, which is an entirely separate issue but one I hope to address in this blog.
I hope that you agree there is no question that the health care system in this country is broken. The deplorable lack of progress in increasing the survival rates of AYA cancer patients is yet another indicator. To join the advocacy of AYA cancer patients and their issues, please visit imtooyoungforthis.org. The site is a gateway to many resources including advocacy, community, and cancer information/education.
That’s disturbing and something I never knew as far as group survival rates. Possibly it could be that once you fall outside the parameters of parental influence, i.e. someone with better sense forcing you to go to the doctor, your health is not always the highest on your list of concerns. You are not supposed to get sick at that time of your life so you assume everything is great. Aside from that, insurance just doesn’t care to be as proactive as it shuld be. For example, I have to pay all costs to have a mammogram until after 35 and even with colon cancer running in my family, I’m not allowed a colonoscopy as a preventive measure until after 45. I guess these ages have something to do with out-dated statistics. My insurance even decided that a Gyn. was a specialist and the co-pay is higher, discouraging yearly paps in my opinion. I also think the system is skewed against women. Thanks for the post. It’s very eye opening and something that’s tremendously important. Young people should take more responsibility for their care and speak out on these issues before they get old like me and they become more immediate.
By: Lisa on January 6, 2008
at 4:14 pm
[...] rest of the lunch we spent discussing topics of interest in cancer. We hopped around from AYA issues to insurance reform to the role of spirituality and emotional support in cancer care. As always, my [...]
By: “I’m From Breast” « Dr. Miggy on February 5, 2008
at 11:19 am