The MCMF focuses its efforts to find cures for EBV and EBV-associated diseases, and to improve the quality of life for adolescents and young adults with cancer.
“Cancer in adolescents and young adults (AYAs) is an important problem that has gone unrecognized, or is only a peripheral concern among numerous research, medical, health services, patient support and advocacy, funding, and cancer surveillance constituencies, as well as healthy teenagers and young adults who do not know they are at risk for cancer. This limited focus has had severe consequences – a lack of cancer survival progress spanning the last two decades and persistent diminution of young cancer survivors’ quality of life.” –National Cancer Institute and LIVESTRONG Young Adult Alliance, NIH Publication No. 06-6067, August 2006 (Reference 1).
In 2005-2006, the National Cancer Institute (NCI) partnered with the Lance Armstrong Foundation (LAF), to develop recommendations for a national agenda to advance adolescent and young adult oncology (AYAO). This collaborative effort, the first public-private partnership of its kind, was performed by an Adolescent and Young Adult Oncology Progress Review Group (AYAO PRG), which reported to the Advisory Committee to the Director of the NCI. The AYAO PRG was made up of the nation’s leading researchers and clinicians in AYAO oncology joined with cancer survivors, advocates, pediatricians, gerontologists, disease-specific experts, statisticians, and insurance and pharmaceutical industry representatives.
The final report of the AYAO PRG (Reference 1) revealed that cancer is the leading cause of disease -related death among the AYA age group (15-39 year olds). Nationally, approximately 70,000 AYAs are diagnosed with cancer every year, approximately 8 times more than the number of children under the age of 15, and more than 10,000 of these AYAs die from cancer (References 1 and 2). Excluding homicide, suicide, and unintentional injury, cancer is the leading cause of death among 15-39 year olds. Cancer is the leading cause of death among females in this age group, and among males in this age group only heart disease claims more lives annually than cancer. Additionally, AYAO PRG findings revealed that children (birth to 14 years) are much more likely to be diagnosed with cancer than AYAs. According to PRG findings, once diagnosed, only 2% of AYA cancer patients are treated in clinical trials, compared to 60% of children under the age of 15.
The NCI AYAO PRG conducted an extensive review of 5-year survival of patients diagnosed with cancer during 1975-1997, using data from the NCI’s Surveillance, Epidemiology, and End Results (SEER) program. The results of their investigation revealed that unlike younger and older age groups which have shown noticeable increases in 5-year survival rates expressed as average annual percent change (AAPC), AYAs (15-39 years of age) have had little or no improvement in cancer 5-year survival rates for over two decades (see Figure 1).
Figure 1. Improvement in 5-year Relative Survival*, Invasive Cancer · SEER 1975-1997**
* Five-year relative survival rates describe the percentage of patients with a disease that are alive five year’s after their diagnosis divided by the percentage of the general population of corresponding sex and age that are alive after five years. Five-year relative statistics are most commonly cited in cancer statistics.
** Adolescent and Young Adult Progress Review Group: Closing the Gap: Research and Care Imperatives for Adolescents and Young Adults with Cancer, Report of the Adolescent and Young Adult Oncology Progress Review Group, National Cancer Institute and the LIVESTRONG Young Adult Alliance, NIH Publication No. 06-6067, Bethesda, MD, August 2006.
There have been numerous other investigations of AYA cancer in addition to that conducted by the NCI AYAO PRG. These investigations have revealed that:
- Within the 15-29 age group, the incidence of lymphoma and leukemia (blood cancers) is significant (~25% of all cancer cases), with lymphoma accounting for ~20% of all new cancer cases between 2004 and 2008 (Reference 3);
- The incidence of non-Hodgkin lymphoma has grown significantly (80%) over the past 2+ decades in the U.S. and most other westernized countries, due in part to HIV and EBV (Reference 4);
- Epstein Barr Virus (EBV) has been linked to both Hodgkin and non-Hodgkin lymphoma (Reference 4), and the NCI has initiated a research thrust related to developing an EBV vaccine (Reference 1); and
- The incidence of non-Hodgkin lymphoma is twice as high in males (than females) and is highest in white males (Reference 4).
Based on the above findings, and Matt’s battle with EBV-HLH and NK T-cell lymphoma in his early 20s, the focus of the MCMF is twofold: to find cures for EBV and EBV-associated diseases, and to improve the quality of life for adolescents and young adults with cancer.
- Adolescent and Young Adult Progress Review Group: Closing the Gap: Research and Care Imperatives for Adolescents and Young Adults with Cancer, Report of the Adolescent and Young Adult Oncology Progress Review Group, National Cancer Institute and the LIVESTRONG Young Adult Alliance, NIH Publication No. 06-6067, Bethesda, MD, August 2006.
- “Too Young for Cancer” and Demanding Action, Health Journal, Wall Street Journal, New York, New York, November 9, 2009, at: http://online.wsj.com/article/SB10001424052748703514904575602523936086974.html
- A Snapshot of Adolescent and Young Adult Cancers, National Cancer Institute, Bethesda, MD, October 2011, at:
- Bleyer A, O’Leary M, Barr R, Ries LAG (eds): Cancer Epidemiology in Older Adolescents and Young Adults 15-29 Years of Age, Including SEER Incidence and Survival: 1975-2000, National Cancer Institute, NIH Publication No. 06-5767, Bethesda, MD, June 2006, at: www.seer.cancer.gov/publications/aya