MDS and minorities

[LeslieAnn]

I have been trying to find information on MDS and minorities - incidence, genetically-driven treatment issues, etc. I am African American and dealing the the myriad barriers to finding a suitable match for a BMT. Is anyone aware of any research on bone marrow failure diseases within specific ethnic groups?

[Birgitta-A]

Hi Leslie,
Here is an article about ethnicity and malignant hematological diseases. They don´t write anything about MDS and different groups - only about leukemia (lower risk for African American), lymphoma (lower risk) and myeloma (higher risk).
http://www.leukemia-lymphoma.org/att...1209492273.pdf
Kind regards
Birgitta-A
69 yo, dx MDS Interm-1 May 2006, transfusion dependent, Desferal 4 days with transfusions for iron overload, Neupogen 2 injections/week for low white blood cells, asymptomatic

[Neil Cuadra]

The rarer the disease, the harder it is to get good statistical samples, which limits the ability to gather statistics on the incidence of MDS by ethnicity. Also, differences in minority access to health care may skew measurements that are based on MDS patients enrolled in studies and trials.

MDS is almost always acquired, not inherited, and in that way differs greatly from genetic diseases that tend to stay in one population group, as sickle cell anemia does among Africans and those of African descent.

At the same time, some genetic predisposition has been reported, with resulting differences among racial groups, as well as regional differences whose reasons are a subject of research. For example, see Differences in epidemiology of MDS between Western and Eastern countries from 2007 and this Increased risk for aplastic anemia and myelodysplastic syndrome in individuals lacking glutathione S-transferase genes from 2003.

The percentages of blood types differs by race (African Americans and Hispanics being more likely to be O+ and African Americans and Asians being more likely to be B+), but that's not of consequence in MDS treatment other than for matching blood types during transfusions.

I wish you the best of luck with your donor search. It's definitely the case that more African Americans and members of other minorities are needed in the national bone marrow registry, since the percentages of minority members lag behind the percentages in the population. That leaves members of minority groups less likely than Caucasians to find matches.

The National Marrow Donor Program and other groups, such as Asians for Miracle Marrow Matches, regularly sponsor or encourage minority recruitment for the registry. The NMDP has a donor information page specifically targeted to African Americans. The NMDP's 2004 Biennial Report (PDF, 296K) includes statistics on minority representation in the registry.

[LeslieAnn]

Thanks for your responses. Brigitta, the article you sent was very interesting. Neil, you are right about the difficulty with the sample size and other issues of validity. I was just wishful that there was some research that would help inform my treatment based on my specific characteristics. (For example, Dr. Olufunmilayo I. Olopade, a professor of medicine and human genetics at the University of Chicago, won a MacArthur Foundation award for her groundbreaking work regarding breast cancer. In the process of trying to find out why 40% of Black women diagnosed with the disease have triple negative breast cancer - in comparison to 15% of women from other ethnic groups – Dr. Olufunmilayo and her colleagues found that African women’s tumors are not dependent on estrogen in order to grow; and their tumors are not responsive to tamoxifen.)

I am already connected with the local NMDP coordinators in three different cities and we are working on drives in each locale. My doctor hasn’t indicated that finding a match is an urgent need, but I am trying to be proactive. I participated in a trial that combined Vidaza with an experimental drug. After six months a BMB revealed no change. I now am completing the third month on Revlimid. So far, my hemoglobin is not so great and I am needing blood transfusions every two weeks or so. But I am working full time, enjoying my hobbies, and otherwise remaining positive.

Thanks again for your feedback.
Leslie