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Introduction
·
Who is Eligible
to Join the Marrow Registry ·
Minority Volunteer
Donors Needed!
Volunteer Donor Information
is Confidential! ·
The Federal Govt.
pays for Minorities to get Tested!
Making Financial Contributions
to Amy's Army ·
What is HLA Testing?
Different Criteria for Blood Donation
Vs. Marrow Donation ·
Speaking
Out for the Marrow Registry!
Introduction
Queridos Amigos/Dear Friends,
Some people have expressed concerns to
me about who is allowed to join the Marrow Registry. I will
do my best to address those concerns. I am glad to receive
any and all comments regarding the Bone Marrow Registry and
their criteria for accepting volunteers to join the Registry.
I have, due to sad circumstances, become somewhat of an expert
on this subject.
My brother died in February 2004 from Leukemia
when a matching bone marrow donor could not be found. You
could say this has become a mission for me...to help educate
people...and to help people to understand the great need for
donors...and to help increase the numbers in the Registries.
You can't imagine how helpless I felt when
my own marrow was not a match for my brother, and I was the
only sibling! I learned that a sibling is only 25% likely
to be a match, and that leaves 75% of all Leukemia patients
seeking a life-saving match from a TOTALLY UNRELATED DONOR!
A few months after my brother's death, I
created an information page called "How to Join the Bone
Marrow Registry," which then became this mini-site: www.marrowdonation.org.
This is still a "work in progress," but I hope it
will serve as a guide for anyone wanting to join the Marrow
Registry, and a resource in answering questions. I believe
that education is the key to increasing the number of potential
donors on the Marrow Registry. I hope you will find this information
helpful and informative.
Sincerely,
Deena
N. Alansky, Multimedia/Web Developer
Created: October 3, 2004. Pittsburgh, Pennsylvania
Updated: January 3, 2008. Pittsburgh, Pennsylvania
Excerpt
from Juan's e-mail:
Perhaps I am wrong, and a more knowledgeable
person should set the record straight, but what I've
seen is that immigrants from latin american countries
are turned down when trying to participate in these
blood/marrow typing drives -- because, supposedly, of
them coming from countries where some diseases are endemic.
No wonder that hispanics would be underrepresented in
Marrow registries. |
Your concerns are very valid and important! And I thank you
for bringing
these topics up for discussion! I hope I can answer some of
your questions.
Who is Eligible to Join the Marrow Registry?
For
the record...the criteria for giving blood and the criteria
for getting
tested and joining the Marrow Registry ARE NOT THE SAME!
| u |
You may be
able to join the Marrow Registry...even if you've
been told you cannot donate blood! |
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You
may be able to join the Marrow Registry...even if you've
recently donated blood. The “waiting
period” before your next blood donation does not
apply to joining the Marrow Registry at a "Marrow
Only" Drive...but you wouldn't be able to join
at a combination "Blood & Marrow" Drive.
So, if you want to join the Registry...you can come
to the "Marrow Only" Drive on Oct. 20, 2004.
|
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You may be able join the Marrow
Registry...even if you've
traveled recently to Europe, South or Central America,
etc. |
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You may be able to join
the Marrow Registry...even if you've had Hepatitis!
It depends on which type of Hepatitis
you had. |
| |
- History of Hepatitis A is
acceptable.
- Antibody to Hepatitis B core
antigen is acceptable.
- Hepatitis B surface antigen
is not acceptable.
- Hepatitis C antibody is not
acceptable.
- Hepatitis vaccine is acceptable.
|
| u |
You
CANNOT join the Marrow Registry if you are below the
age of 18 or above the age of 60. ONLY those
between the ages of 18-60 and in general good health
may join. You remain on the Registry until your 61st
birthday, unless you ask to be removed sooner. |
So, even if you are not able or eligible
to donate blood, there is still a good chance that you can
join the Registry! You can find out by coming to the Marrow
Drive at the U.S. Steel Building on Wed., Oct. 20, 2004 from
7 am-7 pm.
There are certain health conditions, which
would make you ineligible to join the Registry. For example,
medication-dependent diabetes or a history of heart attack,
bypass surgery or heart disease would make you ineligible
to join the Registry. *Please see the links below for further
details!
Eligibility guidelines for marrow
and peripheral blood stem cell (PBSC) donation were established
to protect the health of the potential volunteer donor as
well as the transplant recipient. When you volunteer to join
the National Marrow Donor Program (NMDP) Registry as a potential
donor, you will be asked a series of questions about your
health to help determine whether you meet the donor guidelines.
To learn more about donor eligibility
guidelines, and to read the health history questions,
please visit the following pages on the National Marrow Donor
Program's web site, and additional guidelines from the Gift
of Life web site.
Back to Top
Minority Volunteer Marrow Donors are Greatly Needed!
As
You Can See from this Chart Provided by the National Marrow
Donor Program, Minorities are vastly under-represented in
the Registry!
Hispanics
represent only 10%
African American represent only 10%
Asian/Pacific Islanders represent only 8%
American Indian/Alaska Natives represent only 2%
The Overwhelming Majority of volunteers, 68% are Caucasian!
I
urge every eligible person to join the Registry, but it is
especially important for those in minority groups to join.
Minorities are at a disadvantage in finding a matching donor
when a bone marrow transplant is needed, since people are
most likely to find a match from someone of their own ethnic
background.
Excerpt
from Juan's e-mail:
Even more, I don't know, and it is an empirical question,
that "hispanics" are a genetically homogeneous
population -- and that hispanic people are more likely
to find a marrow match among other hispanics (except,
of course, those in their close family or hometown).
And perhaps those that would be most likely to be matches
are precluded from participating in a Marrow drive,
because of the fear of "tropical diseases"
or immigration red tape. |
Of course, there is much genetic
diversity, even amongst the "Hispanic" population.
But that is ALL THE MORE REASON that we need to have
more potential donors in the Marrow Registry!
Because there is so much diversity, it can
be a true miracle for some people to find their match! But
the more people who join the Registry, the greater the chances
are that more matches will be found! Believe me when I say...when
someone you love has Leukemia, you are praying for that miracle
match to be found!
Years of statistics have shown that a person
of Hispanic origin is most likely to find a compatible genetic
match from another person of Hispanic origin. The same goes
for African-Americans, Asians, etc. Even amongst a diverse
population, certain genetic traits are more likely to occur
among certain ethnic groups.
The fear of "tropical diseases"
at the Central Blood Bank might prevent you from donating
blood, but it will not exclude you from getting tested and
joining the Marrow Registry. One of the reasons for the different criteria
is that your blood donation is used very quickly, whereas
the Bone Marrow Registry is a LONG TERM COMMITMENT! You might not match anyone's tissue type for YEARS. You might never be a match. But the point of joining is that you are WILLING to be a donor and help save a life IF you are ever found to be someone's miracle match.
Volunteers who join the National Marrow Registry remain in the database until their 61st
Birthday. So, they realize that even if you were exposed to
some "bug" recently, you might not even match someone
for many years.
As far as fear of "red tape" or
"immigration"...all I can say is that the National
Marrow Donor Program only collects your information so that
they can contact you if you are ever found to be a match.
They request the names, addresses, and phone numbers of 2
"Contact People" who are not living with you, and
not living with each other. This is because when people move,
they often forget to contact the Registry with their new mailing
address and phone number!
If you are found to be someone's match, they
want to have more than one way to reach you. The time delay
in contacting potential donors (who have moved...and forgot
to give a new address to the Registry) can be the difference
between life and death for a Leukemia patient waiting for
a life-saving bone marrow transplant! This is the reason they
ask for contact information. It truly is a matter of life
and death!
I joined the Registry in December 2003 after
I got my test results back for my brother. Since I was not
his match, I'm hoping to someday be someone else's match.
I do not recall any questions asking me about my status as
a US Citizen anywhere on the questionnaire.
UPDATE: As of January 2008, I have still not been identified as a matching donor for a patient in need. But I remain willing and hopeful that someday I can give the GIFT OF LIFE! In the meantime, I work hard to educate and encourage my family and friends to join the National Marrow Registry, and many of them have already joined as a result! I think my brother would be proud of the work I'm doing.
Volunteer
Donor Information is Kept Strictly Confidential!
| Excerpt
from Juan's e-mail:
Third, there is the whole issue of confidentiality about
genetic data collections, and about the medical insurance
business. Are they going to say that as I am genetically
"hispanic", and as "hispanics" are
somehow more likely to develop heart disease, my insurance
premium should go up? |
The
only genetic test that is done is called: HLA Typing.
This stands for Human Leukocyte Antigens. This test ONLY determines
your genetic matching as a marrow donor...it doesn't tell
anyone if you're more likely to have a heart attack!
The National Marrow Donor Program and other
similar Marrow Registries maintain the highest level of confidentiality
in regards to your personal information. Your HLA Typing is
ONLY shared with doctors and certified Marrow Donor Programs
that are seeking matches for patients. This information is
kept private and confidential and is not available to insurance
companies.
Minorities
Can Join the Marrow Registry for Free!
The Federal Government Pays for Minorities to get Tested!
I have spoken with Lisa Katz, mother of the
14-year-old Leukemia patient, Amy Katz. Lisa Katz has truly
become an expert on the Marrow Registry, since she has been
active in helping to organize the Marrow Drives sponsored
by Amy's
Army.
Lisa Katz informed me that when you check
off one of the boxes on the registration/consent form that
identifies you as a Minority, the FEDERAL GOVERNMENT WILL
PAY FOR THE TEST! This is because the government has recognized
that there is a huge shortage of potential minority donors
listed in the Registries, and so they are willing to cover
the costs for minorities to be tested.
It is still FREE for anyone to join
the Registry at an Amy's Army Bone Marrow Drive...but
the difference is...if you are a minority, the government
pays for the test. If you are NOT a minority, then the Katz
Family pays for the test! At $70.00 per test, you can imagine
how this can become a financial burden for a family.
But the Katz Family is looking for that miracle
match to save their daughter's life, and so they are willing
to do whatever it takes to add new names to the Registry.
And at the same time that they search for Amy's match, they
are also helping many other families by increasing the number
of potential donors in the Marrow Registry.
Since 2003, Amy's Army has added over 8,000 new names to the ranks of the Marrow Registry, and found matching donors for 22 patients in need! But the search for Amy's miracle match continues.
Lisa Katz has made the analogy that we are looking for the
proverbial "Needle in a Haystack" to find Amy's
match right here in Pittsburgh. But if you're looking for a needle in a haystack, then you might need to put more needles in the haystack! If every family affected
by Leukemia organized Marrow Drives across the United States and the world, then together, we
will find each other's matches!
Helping Amy's Army
www.amysarmy.org
To offset the cost of testing at these Marrow
Drives, Amy's Army does some fundraising at the drives and
through their web site; and they've received a few small grants
and donations from many kind individuals. Many people don't
realize that the cost of providing Bone Marrow screening drives
is not covered by any health insurance company.
If you would like to help Amy's Army
to continue providing FREE TESTING to the public
at
these Marrow Drives, please consider sending in a donation today! Thank you.
Please send donations for Amy's Army to:
Amy's Army Treasurer
1193 Lakemont Drive
Pittsburgh, PA 15243
What is HLA Testing?
HLA testing is used to determine each
person's unique
tissue type based on Human Leukocyte Antigens.
Human Leukocyte Antigens are proteins are
on the surface of most tissue cells and give an individual
his or her unique tissue type. HLA factors are inherited from
mother and father and the greatest chance of having the same
HLA type is between siblings. On average one in four siblings
is expected to share the same HLA type. The testing for HLA
antigens is referred to as “tissue typing.”
Patients are matched with stem cell donors
or cord blood units by comparing their HLA tissue types. HLA
is the name given to the system used to identify the unique
markers (antigens) that the immune system recognizes. These
unique markers are found on virtually all cells in the body,
including white blood cells. In a stem cell transplant, six
HLA antigens are considered most important for matching: two
A antigens, two B antigens and two DR antigens.
HLA molecules identify foreign particles
that enter the body, triggering the immune system to attack
these invading cells. These proteins on the outer part of
the cell help the body fight illness.
To learn about the role of HLA typing in
Marrow Transplants and to understand why siblings are
only
25% likely to match, visit the Wikipedia web site's entry on Human Leukocyte Antigens:
http://en.wikipedia.org/wiki/Human_leukocyte_antigen
Different
Criteria for Blood Donation Vs. Marrow Donation
| Excerpt from Patricia's
e-mail:
Of course, Latinos are genetically very diverse. It
is an "ethnic" label (cultural-socio-political-geographical).
Something I do know, that refers to
blood donations (not bone marrow, although may be related):
I have donated blood before. Now I can't until January
of 2005, because in Jan. 2004 I was in Nicaragua and
visited places outside of Managua, where malaria, dengue,
etc., etc., may be endemic. (In reality, you may get
dengue in Managua, too, but the restriction is only
for the areas outside of the capital). AFTER 1 year
of not being in any of those areas, I will be eligible
to donate blood again. They have areas all over the
world listed in their files. |
Thank you Patricia for pointing out
that there are different criteria for donating blood vs. joining
the Marrow Registry. Even though a person may be prohibited
from donating blood, YOU MIGHT STILL BE ABLE TO JOIN THE MARROW
REGISTRY at a MARROW DRIVE!
I would also like to point out that Amy's
Army does participate occasionally in local Pittsburgh Blood
Drives, and when you join the Registry through a Blood Drive,
then of course, you are required to donate blood. The Central
Blood Bank requires a blood donation in order to test you
for free to join the Registry.
If you are someone who normally gives blood
a few times a year, then joining the Registry at a Blood Drive
or at one of the Central Blood Bank's many locations, might
be very convenient for you. But if you are unable to donate
blood, then please come to a "Marrow Only" Drive,
where a blood donation is not required. The test is just a SIMPLE CHEEK SWAB to collect cells for the HLA testing.
If
you cannot donate blood, then please come to a "MARROW
ONLY" DRIVE!
Speaking
Out on Behalf of the Marrow Registry!
Please don't hesitate to write to me with
any other questions or concerns. I hope I’ve done a
good job in answering your questions today. Let me know if
I can be of further service.
I am available to do public speaking for
groups and organizations in Pittsburgh. If you belong to a
group, club, etc. that you think would be interested in a
guest speaker to talk about the Marrow Registry, I would be
more than happy to come and speak to your group, and answer
questions to the best of my ability.
Write to me at: deena@deenasportfolio.com.
Sorry this page is so long…but there’s
just so much to say about this topic, which is near and dear
to my heart! I hope to see you at the Marrow Drive downtown
on Oct. 20th. I will be volunteering all day with the folks
from Amy’s Army.
For more information, please visit these sites:
The National Marrow Donor Program: www.marrow.org
Leukemia & Lymphoma Society: www.leukemia.org
Amy’s Army: www.amysarmy.org
Gift of Life: www.giftoflife.org
My Brother's Fight Against Leukemia:
www.learnaboutleukemia.org |
