Sometimes the story is in the footnotes. In the most recent edition of the National Cancer Institute's Atlas of Cancer Mortality in the United States: 1950-94, the last sentence fragment on the notes on multiple myeloma caught my attention. It was a sentence about the incidence of myeloma in "blacks, whose rates are much higher than those among whites for reasons that are unknown."
When I mentioned this fact to a myeloma patient from New Jersey more than a year ago, he was astounded. "You know," he said, "I've never met a black person with myeloma." And he had been diagnosed more than two years earlier and is active in myeloma support groups. Unfortunately, the evidence suggests that he will meet black patients with myeloma sooner rather than later.
Black Americans are at highest risk among the general population to contract multiple myeloma. In a population where the average incidence of myeloma is 4/100,000, black males and females are diagnosed at a rate of 10.8 and 7.2 per 100,000, respectively. Among black males, myeloma is the ninth most prevalent cancer.
As Dr. Morie Gertz of the Mayo Clinic once pointed out to me, "according to the SEER (the National Cancer Institute's Surveillance, Epidemiology, and End Results program) cancer statistics, the incidence of multiple myeloma in African Americans is higher than in whites and is rising faster. The mortality is also rising faster."
Among black males and females over 65, the incidence rates increase significantly. The myeloma incidence rate for black males over 65 is 73 per 100,000, as compared to 35 per 100,000 white males over 65. The corresponding numbers for black and white females over 65 are, respectively, 50 and 22 per 100,000. Similar differences in cancer incidence rates between various minority groups and the general population have been noted in other research studies and have led to action within NCI.
Last year, in a Senate hearing on minority cancer issues, an independent panel recommended "that NCI should give consideration to the magnitude of the cancer problem in different ethnic groups" and "coordinate an extensive program of re-search on cancer among ethnic minorities."
The panel also recommended replacing the four existing federal statistical racial categories used by NCI - White, Black, Asian or Pacific Islander, and Native American - with ones that put "a greater emphasis on the differences in cancer among ethnic groups, [and] determining the roles that diet, lifestyle, and customs play in varying rates of cancer."
In response to these recommendations, NCI launched a $60 million, five-year program "to address the unequal burden of cancer within certain special populations in the United States."
On April 6, 2000, NCI awarded 18 grants to address various cancer issues focusing on minority populations. Although none focus specifically on multiple myeloma, there should be great benefits to our understanding of some of the ethnic discrepancies of the disease.
For example, one study at the University of Alabama, Birmingham will study African-American populations in two rural areas and two urban areas in the south. Other grants will focus on issues such as cancer awareness and prevention in minority communities. All will study areas that have been traditionally neglected or rarely studied by researchers.
Since so little is known about multiple myeloma and since black Americans have the greatest risk to get the disease, this could be an important vehicle to learn more to benefit all patients. My hope is that researchers will be interested in these questions as they relate to myeloma and be drawn to the new opportunities for funding.
Write and call your representatives and senators to educate them about the relationship between the uncertainty of myeloma and, more specifically, how some of the uncertainty can be researched by focusing on black Americans with myeloma.
Remind them that few people understand that multiple myeloma is an incurable cancer of the bone marrow. Remind them that it's myeloma, not melanoma.
Editor's Note: Please contact IMF Advocacy Consultant Greg Brozeit at (818) 728-4291, by fax at (818) 783-6985, or via e-mail at firstname.lastname@example.org