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Posted July 12, 2005
July 12, 2005
The Honorable Patty Murray (D-Washington)
United States Senate
173 Russell Senate Office Building
Washington, DC 20150
Dear Senator Murray:
We are writing with regard to H.R.2520, the
“Stem Cell Therapeutic and Research Act of 2005,”
which has been received in the Senate from the House. We support the
creation of a national umbilical cord blood registry, and urge you to
ensure that the enabling legislation requires transparency of program
operations, and safeguards to protect against the exploitation of poor
and minority women as potential donors. Furthermore, the cord blood
program should directly address healthcare disparities faced by people
of color in Washington State and the nation.
As an organization dedicated to advocating for mixed race people and
families, the MAVIN Foundation became involved with blood and marrow
donor recruitment because we learned of the terrible odds mixed heritage
people now face if they need an unrelated transplant.
In 2001, five-year-old Nicole
Howard was diagnosed with a rare form of leukemia. Because of her
mixed race heritage—Japanese American and Caucasian—her
Seattle doctors estimated that at least 55,000 people would need to
be registered in order to find her match. In response, we launched MatchMaker,
the only national program dedicated to mixed race marrow donor recruitment,
retention and education. Unfortunately, a match has not yet been found
for Nicole, but we have registered nearly 10,000 people to the National
Marrow Donor Program (NMDP) Registry, and continue this work on
behalf or her and thousands of other waiting patients.
We are excited by the prospect of a national cord blood program because
we have seen how cord blood transplants save lives. After not one of
the seven million donors on the worldwide registries was a match for
our three-year-old focus patient, Dakota
Kwiecinski, an unrelated umbilical cord blood sample saved his life.
Like Nicole, Dakota’s multiracial heritage—Navajo and Caucasian—had
complicated his search.
But our excitement is tempered by the reality faced by Nicole, Dakota,
and other minority patients, who too-often receive inferior healthcare.
report by the Institute of Medicine found that even when insurance
status, income, age and severity of conditions are comparable, people
of color in the United States are less likely to receive even routine
medical procedures and experience a lower quality of health services.
Despite the growing diversity of Washington State and the nation, too
little is being done to level the healthcare playing field for racial
and ethnic minorities, with tragic results. We feel that H.R.2520 does
too little to address this issue, and could even exacerbate it. H.R.2520
fails to address the many barriers facing people of color, both as potential
donors and as potential transplant recipients. Furthermore, the NMDP’s
own statements acknowledge that focused cord blood collection may be
unsuccessful in finding matches for minority patients. We feel strongly
that a national program funded by taxpayer dollars must operate based
on accurate, unbiased information, via a transparent process that includes
stakeholder participation. Without strict adherence to these principles,
we fear that an unregulated cord blood industry’s drive for customers
could generate misleading information and could contribute to the exploitation
of minority women and communities of color, who have higher birthrates
but less access to specialty healthcare.
Instead, we hope that you will support legislation and funding
that would enable the following:
- Improved access to all healthcare services for poor and minority patients,
including blood and marrow transplants
- A dramatic increase in minority (including mixed race) representation
in the National Marrow
Donor Program (NMDP) Registry
- The dissemination of culturally-relevant recruitment, retention and
education programs and materials to expectant parents of racially and
ethnically diverse backgrounds
- The provision of culturally and linguistically appropriate services
to patients, many of which are already protected under Title VI of the
Civil Rights Act
- Educating healthcare providers to inform expectant parents about blood
and marrow donation, as well as umbilical cord blood donation
- Increased overall funding for health programs
Fortunately, we do not have to move forward blindly. We can learn lessons
from existing umbilical cord blood programs, including the National
Heart, Lung and Blood Institute’s (NHLBI) now-completed Cord Blood
Transplantation Study and several public programs across the nation.
By reviewing their demographic data and track records, we can identify
best practices to organize a national cord blood program that serves
all Americans equally.
Thank you very much for your consideration. Please do not hesitate to
contact us if you require additional information, and thank you for
your commitment to ending healthcare disparities faced by communities
of color.Very truly yours,
Program Manager, MatchMaker Bone Marrow Project
Download a PDF version of our letter here.
For more information, contact Nicki here
or call 206 622 7101.
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