New Year’s Resolutions – Cord Blood Donation and Registering to Donate Bone Marrow ̵
Thinking about New Year’s Resolutions? Please consider two that may actually save a human life. Both resolutions are easy to fulfill. For one, you can spread the word that cord blood donations at birth offer enormous opportunities to save lives because the blood contains life-saving stem cells. For another, you can register to become a potential bone marrow donor. Set out below are more facts on why the needs are so great and why it’s easy to accomplish both resolutions.
Cord Blood Saves Lives
There is enormous medical value to donating cord blood and placentas when children are born. Why? Because they are chock full of pluripotent stem cells able to evolve into cells performing most any cellular role in the body. Why does that matter ? Because the cells may replace existing defective or failed cells that cause cancers and other dread diseases. For example, read a November 15, 2009 Science Daily article about great new science in which cord blood is used to achieve tremendous results for patients who need bone marrow (stem cell) transplants to overcome leukemias and other cancer involving blood and bone marrow. Or read the full medical article. The short version of the story is as follows:
"ScienceDaily (Nov. 15, 2009) — A new study from the Masonic Cancer Center, University of Minnesota shows that patients who have acute leukemia and are transplanted with two units of umbilical cord blood (UCB) have significantly reduced risk of the disease returning."
Is there really a need to spread the word about the value of cord blood ? You bet – the science above is new, and so most people have no idea of the value of the cells, and are not aware of the critical needs. As a result, we are missing enormous opportunities to save lives. How do I know that ? Various ways, but one is through a holiday gathering attended by a college roommate, Dwight, a brilliant and compassionate person who is a practicing Ob Gyn. The topic came up because several former college friends gathered for the holidays, and one brought up the topic of knowing way too many people with cancer even though we are all less than 55. After various comments about cancer treatments and hopes for "cures," Dwight the Ob GynB stated his intense frustration that many parents to be – and hospitals – pay virtually no attention to cord blood donations. The result ? Every day, thousands of people and hospitals fail to preserve and use thousands of placentas and cord blood that collectively contain billions of stem cells that could save countless lives. So, please spread the word. It takes only a few seconds, for example, to forward an email or to cut and paste some of this text into an email to your existing list of friends and neighbors.
Register as a Potential Bone Marrow Donor
For a second resolution, consider registering to become a bone marrow donor. It’s easy to register with the nationally-recognized "Be the Match Foundation." Click on Be the Match or use your web browser to go to www.marrow.org. Contrary to what many people think, the need for bone marrow has not ended. To the contrary, there is a growing need for bone marrow donors, and the need is especially critical for children. Why ? Because diversity and "mixed marriages" mean that traditional ethnic lines are being crossed, thereby producing new genomes for which there are few or no matches because the existing potential donors are typically older and not so diverse. So, registering new, younger and more diverse potential donors is of critical importance for children with leukemias and other blood cancers. The Wall Street Journal covered the topic in detail; read the full story or see the text pasted below. As a result, Mayo Clinic and others run registration drives, as exemplified by Mayo.
Registering more potential donors also is critical because some cancer rates are soaring. Some of the stunning numbers are that for just 2010, and for just the United States, over 65,000 people will be diagnosed with non-Hodgkins lymphoma, and another 8,000 will be diagnosed with Hodgkin’s lymphoma. For too many of these patients, the only real chance for life is a bone marrow transplant.
What’s involved in registering ? Not much – the registration process is simple, painless and can be done through the mail. How? First, the potential donor registers online with contact information. The mail will then bring a small packet containing a couple of cotton swabs (Q-tips) that you use to gather some fluid/skin cells from the inside of the mouth. Rub the swabs on the inside of your mouth, mail the swabs back in, make a small donation, and that’s all there is to it. After that, the registration group submits the q-tips to a lab that analyzes the DNA on the swab to indicate the genomic types for which the registrant perhaps could be a donor. Please click here to go the Be The Match website and register right now to start the new year off with action that may save a life.
Isn’t bone marrow donation very painful ? NO, NO, NO – that used to be true, but it’s not true anymore ! The typical bone marrow donation process today involves extracting the needed marrow cells through a blood donation/filtering process that takes a few hours. In essence, a needle is inserted, blood is slowly drained out to run through a filter, and the needed cells are collected through a process known as peripheral blood stem cell (PBSC) donation. You can easily talk, watch TV, or listen to music during the process. Or you could simply reflect on probably saving a life. Go here to read more myth busting about bone marrow donation.
Hopefully you are now resolved to take action. After all, how many other actions can you take this year that might actually save a life ?
But, if you need more motivation, there is a Wikipedia article on marrow donation and the various involved groups. Or, consider the full May 27, 2009 Wall Street Journal article (below) on the critical needs.
• THE INFORMED PATIENT
• MAY 27, 2009
I. Building Diversity in Bone-Marrow Registries
• By LAURA LANDRO
Like thousands of patients battling blood cancers, Natasha Collins faces a needle-in-a-haystack search for a bone-marrow donor. But for the 26-year-old medical student with recurrent leukemia, the hunt is even more of a challenge because she is half African American and half Caucasian.
Transplants of bone marrow, which produces new blood cells, offer a potential cure for a growing number of cancers and other diseases, but only if the patient and donor are genetically compatible. Only 30% of patients have a sibling with the same genetic makeup who can provide marrow transplants. For other people, the best chance of a match is someone of their own race or ethnicity. That poses a special problem for minorities, and the growing number of people who identify themselves as multiracial, because for these groups there is a shortage of donor volunteers.
Some seven million people in the U.S. have signed up on a national registry to be potential bone-marrow donors. Even so, less than half the 10,000 patients who needed a transplant last year were able to find a genetic match that led to a transplant. While the odds of a white patient finding a match are 88%, the odds for most minorities can be as low as 60%. The odds of actually receiving a transplant are as low as 20% for some minorities because of other factors such as access to care in their communities.
Now, the National Marrow Donor Program, the nonprofit group that administers the registry with partial funding from the U.S. government, is stepping up efforts to recruit donors from different ethnic backgrounds. The 21-year-old program, which recently changed the name of its registry to Be the Match, is spreading its message through social media Web sites like Facebook and MySpace. It is trying to reach a younger generation that its research shows isn’t aware of the program’s mission or of medical advances that make it possible to screen potential donors by testing DNA with a simple cheek swab from a kit (available online at bethematch.org).
Marrow Transplant Myths
Be the Match also aims to shatter some myths about bone-marrow donation, such as the fear that it will hurt the donor. Traditionally, donors underwent general anesthesia so stem cells in the bone marrow could be collected from needles inserted into large bones in the back. About 20% of transplant donations are still conducted this way.
Now, in a relatively painless procedure that doesn’t require anesthesia, some 60% of transplants are performed by harvesting a donor’s peripheral blood stem cells, which are cells from bone marrow that circulate in the blood stream. These can be collected by circulating the donor’s blood intravenously over several hours through a machine. The procedure also delivers a greater volume of stem cells to the recipient than a traditional bone-marrow transplant. The donor’s body regenerates the stem cells within a few weeks. Donor costs are typically covered by the patient’s insurance or by funds from the registry and other sponsors.
An additional 20% of transplants are performed using umbilical-cord blood cells that are donated after childbirth. This procedure, which doesn’t require as close a genetic match between donor and recipient, is relatively new, and there isn’t a large body of scientific evidence of its long-term effectiveness and complication rates.
Bone-marrow transplants, first offered in the 1960s, have been used to treat leukemia, aplastic anemia, lymphomas such as Hodgkin’s disease, multiple myeloma, immune-deficiency disorders and some solid tumors such as breast and ovarian cancer. Before undergoing transplants, patients typically are treated with chemotherapy and sometimes radiation to destroy their diseased marrow. The donor’s healthy blood-making cells are then infused directly into the patient’s bloodstream, where they help to build a new blood supply.
But for a transplant to succeed, markers known as human leukocyte antigens, or HLAs, have to match between donor and recipient. The body uses the markers to recognize which cells belong in the body and which are intruders. A close match will reduce the risk that the patient’s immune cells will attack the donor’s cells or that the donor’s cells will attack the patient’s body after the transplant. Patients inherit half their HLA markers from each parent, and each sibling has a 25% chance of matching. But it is possible to have even a dozen siblings and no match.
Diagnosed With Leukemia
I was one of the lucky ones. When I was diagnosed with a form of leukemia in 1991 and needed a transplant, both of my brothers tested as identical matches on each of six HLA markers used to determine compatibility (though five are sometimes acceptable). Because some HLA types are found more often in certain racial and ethnic groups than others, the HLA markers of a donor can be close enough to be compatible with a patient from a similar ethnic background. People with mixed backgrounds, such as African and European ancestry, for example, have unique combinations of HLA types. "As long as we create more diversity [in the population], we will need more and more donors to reflect that," says National Marrow Donor Program Chief Executive Jeffrey Chell.
Ms. Collins, the medical student, had a transplant from donated cord blood cells in May 2007, but her cancer, known as acute myelogenous leukemia, has returned. Her doctors now believe a bone-marrow transplant offers Ms. Collins the best chance of a cure. Her classmates at Yale University have held bone-marrow drives, sent emails to other medical schools to recruit donors, and created a Facebook group with over 1,000 members and a YouTube video (both accessible at www.matchnatasha.org).
Ms. Collins is now undergoing chemotherapy, which weakens her immune system. She says she is trying to keep up with her class work by studying at home. "The good news is that we’ve found some potential matches," she says.
The National Marrow Donor program says it is seeing results from its minority recruitment efforts. Groups such as Historically Black Colleges and Universities conducted drives that have signed up 5,000 donors in a program launched last year. The donor program is also working with Hispanic groups and Asian and Pacific Islander organizations, as well as with blood centers in states that have large Native American populations. In 2008, it signed up 440,000 new donors, just under half of whom were from diverse racial and ethnic communities. The group also is working with international registries, with a total of five million potential donors, and is signing cooperative agreements with countries like Brazil.
Studies show that there are a number of reasons why different ethnic groups don’t sign up as bone marrow donors, including a lack of educational resources devoted to those communities, fear of doctors and hospitals, concern about putting personal information in a database, and cultural taboos about donating a physical part of oneself.
In one effort to recruit Asian and Pacific Islander donors, 26-year-old acute leukemia patient Michelle Maykin founded Project Michelle, an online campaign that includes a Web site, projectmichelle.org, with blogs, photos and videos. The project has recruited more than 15,000 new donors by sponsoring bone marrow drives with the help of the national registry at Asian churches and student groups, among others.
Advances in Matching
Improvements in matching techniques, using DNA-based testing methods, can more precisely identify the best donor. Be the Match recently started offering an online search tool that patients and doctors can use to get an idea of how many potential matches may be in the registry.
In the past 18 months, the registry found matches for more than 5,000 transplants, an 18% increase over the previous period. More diseases, such as sickle cell anemia, are now treated with transplants. And patients 50 and older, for whom transplants were once considered too risky, are now eligible for the treatment. That’s because of new, pre-transplant chemotherapy regimens that are less toxic, and better post-transplant care to prevent infections and rejection.
Some medical conditions may eliminate potential donors, such as bleeding problems or heart disease. When Christopher Bartley, a classmate of Ms. Collins at Yale Medical School who has African-American, Caucasian and Honduran roots, tried to sign up, he found that he was ineligible because he suffers from sleep apnea, which causes pauses in breathing during sleep.
And even though the hope is that more minorities will provide matches for others in the same ethnic mix, it is also possible to find a match where there is no ethnic similarity. Victoria Namkung, a Los Angeles writer of Irish, Jewish and Korean origins, who signed up as a donor several years ago, was surprised to learn that she was the match for a Mexican-American man in Ft. Myers, Fla. Donors and recipients can communicate anonymously for the first year through the registry and then meet if they choose. Ms. Namkung says she and her recipient have met and keep in touch. The feeling of having provided him a life-saving transplant "changed my life," she says.
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Printed in The Wall Street Journal, page D1