According to the National Cancer Institute (NCI) and other health organizations, the burden of cancer is not equal among individuals in the general population. For example, all other things being equal, race and ethnicity account for significant differences in incidence and survivability of certain cancers and how well people respond to standard treatment.
One area in which cancer disparities are pronounced is clinical trials. Clinical trials are research studies with humans. They are the last step in the long process of bringing new treatments to clinical practice.
The National Center for Biotechnology Information reports that approximately 3 to 5 percent of all adult cancer patients participate in clinical trials. Of these, fewer than 15 percent are racial and ethnic minorities. There are age disparities as well. A Food and Drug Administration (FDA) review found that barely one-third of patients 65 or older were enrolled in clinical trials, although they account for about 60 percent of adult cancer cases.
How Trial Disparities Affect You
Clinical trial disparities influence the outcomes of studies. For best results, participants should reflect the entire population affected by the diagnosis (for example, all breast cancer patients). When any group is under represented, it furthers the disparity by favoring those who will most benefit from the trial. Furthermore, researchers need good representation to test for differences in outcomes among participants, and ensure the safety of therapy across a range of biological and genetic characteristics.
Several factors make it difficult to enroll under represented populations, including lack of awareness, eligibility criteria, cultural barriers, and fear and mistrust of the healthcare system. Rural and low-income patients, and those without health insurance or third-party reimbursement for clinical trials, are less likely to participate. A study from the United Kingdom also found that physicians were less likely to refer poor patients for clinical trials.
What's Being Done and What You Can Do
The NCI Community Clinical Oncology Program Network is helping ensure patients treated in their communities to have access to quality medical care—including clinical trials. The National Institutes of Health and the FDA have also mandated the inclusion of women and minorities in clinical trials.
If you have cancer, you don't have to wait for an invitation to participate in research. Ask your physician if you qualify for any clinical trials. Remember, you are your own best advocate. Assert yourself, communicate your needs clearly, and confidently assume some control over your care. Good places to start: The NCI and the Coalition of Cancer Cooperative Groups are two of many organizations that provide patient resources for clinical trials.
Liesa Harte, MD, reviewed this article.
Sources:
Community Clinical Oncology Program. "For Patients & the Public." Web.
http://ccop.cancer.gov/about/patients-public
National Coalition for Cancer Survivorship. "SELF ADVOCACY: A Cancer Survivor's Handbook." Web. 2009. http://www.canceradvocacy.org/assets/documents/self-advocacy-publication.pdf
Felder, Tisha Moniek, MSW, Pena, Gabriela D., and Chapital, Bridget F., Med. "Disparities in Cancer Clinical Trials: An Analysis of Comprehensive Cancer Control Plans." Prevent Chronic Disease 6(4) 2009: A116. Web. 15 September 2009. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2774630/
Seligson, Susan. "BU Takes On Cancer: Racial Disparities." BU Today. Web. 9 April 2012. http://www.bu.edu/today/2012/bu-takes-on-cancer-racial-disparities/
