Uncovered… Discriminatory Practices at the National Marrow Donor Program (NMDP)
An unfair chance at life for minority patients in need of a lifesaving stem cell transplant: Discriminatory practices revealed at the leadership level of National Marrow Donor Program (NMDP)
Lincoln Park, N. J. (PRWEB) November 21, 2005
Matchpia. org, the largest “Grass Roots” effort in the world, with it’s primary focus to promote the importance of educating and recruiting individuals to becoming “lifesaving” bone marrow and stem cell donors, has uncovered many faulty processes with the current National Marrow Donor Program (NMDP – the US registry of potential bone marrow and cord blood donors), which hinder South Asian and ethnically diverse (minority), patients from having a equal chance at finding a donor match.
At the onset, the NMDP registry of donors is heavily weighed to “favor” greater chances of finding a match for patients that are Caucasian decent, rather than patients who are ethnically diverse (minorities). “This fact has been evident since the registry was created in 1986 (funded by HRSA-Congress and DOD-Department of Defense), however, what we realized, is that the leadership at the NMDP has done very little to effectively communicate the importance of becoming a bone marrow and stem cell donor in the South Asian and other ethnically diverse communities”, mentioned Tim Dutta, Executive Director at Matchpia. org, “When my fiancée Pia was diagnosed with acute myelogenous leukemia (AML) in 2002, the NMDP said they had no donor match, and she had to undergo four rounds of grueling high dose chemotherapy to get into remission (cancer free). But when she relapsed with AML Leukemia June of 2004, the Office of Patient Advocacy (OPA), and the Chief Operating Officer at the NMDP told me herself, that the chances of finding a match for my fiancée were still slim to none two years later. She further went on to tell me that our ethnicity hinders our chances, as the South Asians are very uncommitted to get tested, and even more uncommitted to going through the donation process… she came out directly and said…you should spend whatever time Pia has left… together. It was almost like saying the end was near, and we had no choice but accept it.”
Having no one to turn to, Tim (with friends, family and a complete barrage of strangers), started a campaign in New Jersey that quickly scaled up like wildfire throughout the nation. “We knew we had to educate and recruit as many bone marrow donors to increase my fiancée’s and all the other South Asian patient’s chances for a donor match, but what we didn’t know, was the lack of support and cooperation we would receive from the leadership of the NMDP. As we arranged donor drives with NMDP recruiters, it was very clear that South Asians were coming in herds to get tested, however, this was not very welcomed by the director of minority recruitment at NMDP, who was very unsupportive on helping us set-up donor drives on a timely manner (we later learned that he discriminated other South Asian families too). There was even a point when the director of minority recruitment wanted to stop our campaign, and shut our website down (which received more than 1.85 million hits in the last year), as he wanted us to do things his way only”.
With many appearances on various media outlets like television and print (CNN, Good Morning America, NBC, ABC, Associated Press, New York Times and other newspapers and the internet), the Matchpia. org campaign soon became the largest campaign for bone marrow awareness in America. “We couldn’t rely on the NMDP to understand the “cultural complexities of our community,” as they only complained about the problem: on how uncommitted South Asian and minority donors were, but didn’t want to do anything to learn how to provide a solution to the problem. However, if you really think about it, if the NMDP performed better in having recruiting strategy in place for ethnically diverse communities, patient families can spend more time with their ill loved ones instead of doing donor drives everyday…it’s that what the NMDP gets paid to do?’ commented, Tim Dutta.
Late October of 2004, a donor match was found for Pia and she had a successful transplant at the Fred Hutchinson Cancer Center in Seattle. After spending six months in post recovery in Seattle Tim and Pia returned home to New Jersey to continue to help South Asian and ethnically diverse patients to find their matches while advocating on their behalves’ to the NMDP and transplant centers around the country. “Our cause has never ended, we had eleven patients in our campaign find matches in the last year, and there will be many more to come, as we have recruited over 24,000 donors to date. According to the CEO of NMDP, he indicated that our efforts will provide the opportunity for twelve patient matches/transplants a year for the next ten years,” reported Dutta.
The Matchpia. org campaign grew even larger, as South Asian celebrities joined on board to help elevate the severe lack of South Asian donors in the registry, donating their time to be a part of the Matchpia. org public service announcement (PSA), campaign. Many talented celebrities in the likes of Parminder Nagra from NBC’s ER and hit movie “Bend It Like Beckham”, Ravi Kapoor from NBC’s Crossing Jordan, Kal Penn from the hit movie “Harold and Kumar Goes to White Castle”, fashion designer Anand Jon and one of our biggest champions Manu Narayan from the cast of the hit South Asian Broadway show “Bombay Dreams” became ambassadors for the cause. The four, thirty and sixty-second PSAs were the first ever South Asian campaign ever endorsed by the Ad Council (the industry leader in public service announcement campaigns).
“Naturally, by now we have demonstrated our ability to communicate with our community and effective run a campaign that empowered the whole community to do something about this crisis. Our strategy was to launch a very effective campaign that can touch everyone emotionally, whether you are a male or a female, a Hindu, Muslim, Sikh or Christian in our South Asian community. It didn't matter anymore, as the barriers of religion, needed to be broken-down in order to save lives in our community. Now the only thing that matters is the compassion for humanity, and all our commitment to sustain it”, added Tim Dutta, “We’ve realized that once you empower a community, and give them knowledge and the appropriate toolkit, they will rise to the occasion to help save humanity”.
The NMDP receives large sums of funds in the excess 23 million dollars from the Health Resources and Services Administration - Congress and an excess of 34 million dollars from DOD (Department of Defense) – Navy (in the form of fees to recruit potential bone marrow donors), and other sources of grants and private funds to educate and assist ill patients to find donor matches. To perform this task, the NMDP relies on a network of donor centers and official minority recruitment groups to educate and recruit potential donors at the community level. “After several conversations with the Chief Executive Officer, Jeff Chell, it was determined that Matchpia. org would become the next official recruitment group of the NMDP, and was the first group to be invited to apply in the last ten years (official donor recruitment group of the NMDP, are advocate groups whose role are to educate an recruit potential bone marrow donors by ethnic races, there are nine official donor recruitments groups). By becoming an official donor recruitment group of the NMDP, Matchpia. org would receive supporting funds like the other official donor recruitment group to carry out donor recruitment and education (to date, over $400,000 of funding for the Matchpia. org campaign has been funded by the Dutta family and members of the community, who supported the Matchpia. org initiatives, not to mention the additional support of over 1000 volunteers who’ve also invested more than 22,000 man hours to this cause).
“Everything was on schedule, we submitted our application for official donor recruitment status and got no feedback on our application, we were subsequently informed that additional requirements were being added in order for us to become official. From our perspective, these requirements needed to be identified to us in the application itself or told to us while we are applying, these requirements were never mentioned prior to submitting our official application, nor were these requirements ever asked from any other donor recruitment groups”, explained Tim Dutta, “These additional requirements are not just outrageous, but discriminatory as the specifically single out the Matchpia. org campaign. What the NMDP Leadership doesn’t realize, is that any federally funded program, under Title VI of the Civil Rights Act of 1964, as amended, (Title VI) prohibits recipients of federal funded programs (such as NMDP), from discriminating on the basis of race, color, or national origin in their programs or activities. Title VI itself prohibits intentional discrimination. Again, the NMDP is flat out singling out Matchpia. org and the South Asian Community from equal access to a diversified pool of live saving donor matches (this would not be as big an issue if they were privately funded, but they are FEDERALLY FUNDED, and have a fiduciary responsibility to serve all the citizens in the United States).”
The NMDP was originally investigated on their poor habits of discrimination and misuse of government funds in 2001, as this is not the first time they have been accused of DISCRIMINATION…there was a book written about them before called “Deadly Monopoly”…where the NMDP was investigated by the Federal Bureau of Investigation (FBI), Department of Justice (DOJ) and Attorney General Reno from the Clinton Administration for discrimination before. “After many amicable conversations with the current NMDP CEO Jeff Chell, we have not been able to resolve this matter. In fact, for the last six months, all the Executive Board members of the NMDP have been notified and emailed of all our conversations not having done anything to resolve matters. Based on past history, it is not surprising that NMDP senior management still continues to discriminate South Asians and ethnically diverse communities, but to see Executive Board members do nothing about it, just exemplifies them condoning this discriminatory behavior and not fulfilling their fiduciary responsibly to Congress and the citizens of this country who rely on them to provide oversight of federal funds,” said Tim Dutta.
This week, the Matchpia. org team of volunteers will be contacting members of the “Reauthorization Committee” (Senate and Congressional members who approve the NMDP budget), in providing testimony from many South Asian and ethnically diverse families who have been a victim of NMDP’s ineffective broken processes that deter South Asian and ethnically diverse families from finding their loved ones donor matches. In addition to patient families, there will also be former NMDP employees who will also testify to discriminatory practices of the NMDP.
“It is very apparent that history is repeating itself at the NMDP, and discriminatory practices still exist at the leadership level,” said Hemant Wadhwani, President of the Asian American Political Coalition. “Ignorance will no longer be tolerated from the NMDP leadership, as we will be asking our membership of 5,000 colleagues to contact all the respective members of the NMDP Reauthorization Committee to investigate and enforce Accountability for the taxpayers.”
Sources close to the NMDP, indicated that at the conclusion of this past August, the Director of Minority Recruitment at the NMDP resigned “To pursue other opportunities.” It was later revealed that the Director of Minority Recruitment, who was discriminating the South Asian and other ethnically diverse communities, was also suing the NMDP leadership for intentionally discriminating him. “It is very ironic to see how discrimination is rampant at the NMDP,” concluded Tim Dutta.
About Matchpia. org:
Matchpia. org was formed to provide South Asian and all ethically diverse communities an equal access to a diversified pool of lifesaving stem cell donor matches, while at the same time increasing donor education, recruitment, retention and patient advocacy. This is achieved by providing various community outreach initiatives, and focusing on the importance of being committed and available we called upon for patients in need of a bone marrow or stem cell transplant. Although this campaign started to help find one woman a match (Pia Awal), it instantly catapulted to saving lives of other South Asian and ethnically diverse (minority), patients that needed lifesaving stem cell transplants
Media Contacts:
FOR MORE INFORMATION, CONTACT:
Arti S. Shah, Communications Lead
Tim Dutta, Executive Director
Phone: (877) 206-8800, Fax: (973) 686-9233,
Website: www. matchpia. org
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