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‘Special focus’ required to eliminate disparities among millennials with cancer
Last week was a first for me — I participated in a Facebook live event.
I had no idea what to expect, but a group of very smart — and very young — communications staff shepherded me through what turned out to be a fun experience.
This event, like my own intermittent dabbling with social media, brought home to me once again the cultural and societal differences that distinguish my generation from millennials, who — according to Time magazine — encompass those born between 1980 and 2000.
Not that I need reminding of this. As parents of two millennial sons, my wife and I often reflect on the fact that their values, lifestyles, expectations and aspirations are all laudable, but indefinably different from ours.
As it turns out, these reflections about generational differences were highly relevant to the Facebook event — intended to raise awareness of a new patient navigation program for adolescents and young adults (AYAs) with cancer in our region, jointly developed by the two major health care systems in the Intermountain West.
Underserved population
The fact that the AYA population is underserved is, of course, well known and has been researched and publicized extensively, including in HemOnc Today (see related article). The sense of isolation that this population often feels on their cancer journey is exacerbated for many in the Intermountain West because of the additional challenges of living in a rural or frontier community.
Regardless of geography, the AYA population faces many emotional, social and survivorship issues that contribute to the inferior cancer outcomes reported for some patients in this group compared with those in other age groups.
As an oncologist with a primary interest in lymphoid malignancy, I have always felt a particular responsibility to this group of patients. I have been in practice long enough to see the emphasis of treatment shift from improving cure rates to balancing the short-term and long-term risks of a particular treatment strategy to maximize health and wellness in the cured population.
Although we have come a long way toward achieving that goal, data continue to suggest that the cancer experience for AYAs is characterized by disparities in access, inferior treatment outcomes and long-term complications that compromise their chances of survival.
Cancer is responsible for the majority of nonaccidental deaths in this age group, and AYA patients with various cancers — including acute lymphoblastic leukemia, acute myeloid leukemia, various sarcomas and eye tumors — have worse survival than younger patients.
Access to affordable health insurance represents a significant barrier for many individuals within the AYA population. Data from Aizer and colleagues show uninsured patients aged 20 to 40 years are more likely to present with metastatic disease, be undertreated and die following a cancer diagnosis than those who are insured. Adding to their disparate outcomes, those in the uninsured group are more frequently nonwhite, and from areas with lower educational attainment and more rural locations.
Cancer survivors in this age group are less likely to have a medical provider and to attend regular follow-up visits, probably in part because of insurance issues. Experts projected insurance coverage would increase in this group in the context of the Affordable Care Act, but at the cost of increased premiums, which may have negated some of this benefit. With the new administration still working on its health care plan, the future for coverage in this group is unclear.
Access to specialized cancer centers also is a cause of apparent disparity. Alvarez and colleagues conducted a population-based study in California to analyze all hospital admissions of AYA oncology patients from 1991 to 2004. Although the proportion of patients who received care at a specialist center — defined as a Children’s Oncology Group– or NCI–designated center — increased from 27% to 43% over the duration of the study, access to this care decreased with public insurance, no insurance, Hispanic ethnicity, or residence more than 5 miles from a specialist center. Researchers did not observe these disparities in AYA patients with leukemia or central nervous system tumors.
Clinical research participation also is poor among this group. Sanford and colleagues showed that 43% of AYAs treated at a pediatric center enrolled in clinical trials, compared with only 11.2% of those treated at an adult center. At the adult center, race, ethnicity, insurance status and disease type all affected trial participation.
Survival and toxicity
New data showing inferior outcomes in AYAs continue to emerge.
In a SEER–based study for 13 regions, Keegan and colleagues examined survival trends for 34 invasive cancers in AYAs, comparing outcomes with those for children and adults. Researchers documented improvements in outcomes for AYAs since 1992 for 14 of these cancers, but these improvements trailed those of adults for many tumor types, including acute leukemias, lymphomas, renal cell cancer and ovarian cancer.
A comparison of survival for children and AYAs with ALL, AML and Hodgkin lymphoma shows that — despite an overall trend toward improved outcomes in all groups — AYAs still lag behind, and racial and ethnic disparities in outcomes persist.
As understanding of long-term toxicities of cancer therapies increases, we are developing better insights into the issues that should drive our survivorship care for this group.
In a study published in April in JAMA Oncology, Keegan and colleagues showed outcomes for second primary cancers in AYAs — frequently the consequence of prior cancer treatment — are markedly inferior compared with those for older patients who develop secondary primaries, or compared with equivalent primary tumors in the same age group (see page 56). This holds true for many cancers, including soft tissue sarcomas, breast cancer, AML and Hodgkin lymphoma.
Among the many factors predisposing to second primaries, a study conducted in Sweden and published last month in Journal of Clinical Oncology showed Hodgkin lymphoma survivors with a family history of breast, colorectal or lung cancer have an increased risk for the corresponding cancers as second primaries — perhaps not surprising, but a reminder that these factors cannot be ignored in the survivorship phase.
Another notable finding from the Swedish study is, despite our belief that new treatment approaches in Hodgkin lymphoma — including reduced use of alkylating agents, omission or reduction of radiation therapy and the use of combined-modality therapy — reduce risk for late toxicity, researchers saw no suggestion that second malignancy rates have fallen over time with these changes in primary treatment.
Barriers to care
The cover story in this issue of HemOnc Today relates to minority accrual in clinical trials. We have continuing evidence that the AYA cancer population represents an underserved minority that deserves special focus, especially in view of the poor trial accrual in this group and the racial, ethnic and access disparities they face.
The barriers to effective cancer treatment and survivorship care in this group are manifold and have been covered extensively in the literature. Despite the increased attention on these patients since the establishment of NCI and Livestrong Foundation AYA Progress Review Group more than 10 years ago, there is a clear need for further research to understand the biologic, behavioral, social and financial differences between these patients and younger and older patients.
Even for those who suffer from conditions like Hodgkin lymphoma — for whom we like to think we have addressed some of the late effects and survivorship issues — data now suggest there is no room for complacency. Very long–term follow-up in the context of well-designed trials should continue to be a priority. Maybe it is time for the NCI to include AYA trial accrual in its metric for minority recruitment to clinical trials.
Finally, the American Health Care Act — at least in its initial form — likely will compound the existing insurance and access challenges. For insured millennials, the Congressional Budget Office predicts that health insurance premiums will increase by 15% to 20%.
If an individual loses insurance coverage — as with a change in jobs — it will cost a 30% charge on the premium to get it back. Although the government plans to “sweeten the deal” with tax credits, these only kick in when you pay taxes. If you do not have the money in your pocket at the time, coverage will be difficult.
This, plus the loss or reduction of cost-sharing subsidies, all pose direct threats to younger patients with cancer with little available cash and sometimes-unstable employment. The policy seems set to widen disparities in this group.
References:
Aizer AA, et al. J Clin Oncol. 2014;doi:10.1200/JCO.2013.54.2555.
Alvarez E, et al. Cancer. 2017;doi:10.1002/cncr.30562.
Kahn JM, et al. Cancer. 2016;doi:10.1002/cncr.30089.
Keegan THM, et al. Cancer. 2016;doi:10.1002.cncr.29869.
Keegan THM, et al. JAMA Oncol. 2017;doi:10.1001/jamaoncol.2017.0465.
Sanford SD, et al. Support Care Cancer. 2017;doi:10.1007/s00520-016-3558-7.
Sud A, et al. J Clin Oncol. 2017;doi:10.1200/JCO.2016.70.9709.
For more information:
John Sweetenham, MD, FRCP, FACP, is HemOnc Today’s Chief Medical Editor for Hematology. He also is senior director of clinical affairs and executive medical director of Huntsman Cancer Institute at University of Utah. He can be reached at john.sweetenham@hci.utah.edu.
Disclosure: Sweetenham reports no relevant financial disclosures.