The Intersection of Race and Blood

A reminder of the complexities of the human body and race, and the need to encourage more minority groups to donate blood and stem cells:

“We need black blood.”

I didn’t know what to say to this, not least because it had been said by the head of donor services at England’s National Health Service Blood and Transplant. The interview was for a book I was writing on blood, a topic I knew a little about by then, but the baldness of his statement still shocked me. Surely we’re all the same under the skin?

I knew the history of race and blood was an ugly one. America’s earliest blood bank, founded in 1937 at Cook County Hospital in Chicago, noted race on donor forms and other blood banks followed suit. During World War II, African-American blood was labeled N for Negro (and some centers refused African-American donors outright) and given only to African-American soldiers. Writing to Eleanor Roosevelt, the chairman of the American Red Cross, Norman H. Davis, admitted that segregating blood was “a matter of tradition and sentiment rather than of science,” but didn’t stop doing it until 1950. Louisiana banned the segregation of blood only in 1972.

But the Red Cross was wrong: While no one is suggesting forced segregation of blood bags, it’s now scientifically established that blood can be racially or ethnically specific.

Most people know about the eight major blood groups: A, B, AB and O, each of which can be positive or negative (the Rh factor). These are determined by genes, and what group you are depends on what combination of proteins and sugars — antigens — are on the outside of your red blood cells. The International Society of Blood Transfusion lists 360 known antigens, but the combinations are infinitely more. Many have no bearing on routine blood transfusion, though all were discovered because they caused a problem with compatibility.

A successful blood transfusion relies on sameness. If incoming blood has an antigen that you lack, your body can react badly to it. In extremely rare cases, the reaction can be fatal; and even if not, it can tax the immune system in people who are already weakened by their condition. Also, you will make an antibody, a sort of immune storm trooper, to better recognize the same antigen next time. Patients who need regular blood transfusions — those who have sickle cell disease, thalassemia or leukemia, for example — may face an ever decreasing pool of suitable blood because they keep creating antibodies.

Wouldn’t it be easier if all our blood was the same? Blame bugs. Much of the variance “has been driven by evolutionary selection by bacteria, malaria and parasites,” says Connie Westhoff, executive scientific director at the National Center for Blood Group Genomics at the New York Blood Center. If malaria finds its way into the bloodstream via a particular antigen, that antigen may change to defend itself, leading to different blood types. Cholera thrives better on intestinal cells derived from O-type stem cells, but O is also more protective against malaria. For many complicated reasons, only 27 percent of Asians have type A, but 40 percent of Caucasians do. Type B is found more commonly in Asia than Europe.

This works not just with blood types. Sickle cell trait is now known to protect against malaria, which is why sickle cell, a painful and debilitating disease caused by malformed blood cells, is found frequently — but not only — in people with African heritage, because malaria thrives in Africa.

This past winter, the case of a little girl named Zainab Mughal in South Florida illustrated all this complexity perfectly. Zainab, who is now 3, has neuroblastoma, an aggressive cancer, and her treatment — chemotherapy and stem cell transplants — means she will need blood.

But she also has rare blood. She belongs to the fewer than 1 percent of the population missing an antigen that the other 99 percent have, making her blood some of the rarest in the world. In her case, she lacks both the antigens Indian B and Big E. Via appeals to the American Rare Donor Program, and then the International Rare Donor Panel in England, Zainab’s local blood banker, One Blood, found five donors with the same extremely rare type.

It was a tall order: the Indian B antigen is known to be lacking in the blood of Iranians, Pakistanis and Indians, so donors had to have both parents from these populations. Two donors live in the United States, two in Britain and one in Australia. Most people, says Susan Forbes of One Blood, “don’t understand the need for a diverse blood supply.”

Publicity about Zainab’s case, though it was extreme in its rarity, helped raise awareness.

Yet it is a difficult message: that our blood is different, red and white cells both. When it comes to finding stem cells for bone marrow transplants, the search has to be equally discriminatory. This time the issue is HLA, the human leukocyte antigens present in white blood cells.

“The reason why ethnicity comes into the picture,” says Dr. Abeer Madbouly, a senior scientist at Be the Match, a program run by the National Marrow Donor Program, the largest stem cell donor registry in the world, “is that HLA encodes the immune system, and the immune system goes through particular conditions based on where you are.” Depending on the threat, each population will develop particular sets of HLA types. In a diverse population like that of the United States, finding a matched donor becomes more challenging for a patient with a mixed ethnic background.

“Let’s say you have someone with African roots and someone from Asian descent coming together, and then they have an offspring of mixed ethnicities,” Dr. Madbouly said. “You have an African HLA and an HLA type common in Asian areas coming together to form a new type of HLA that is not common in either.” Though Be the Match added nearly two million donors to its registry last year, only 30 percent were what Dr. Madbouly calls “diverse.” That’s not enough.

Zainab’s blood is rare, and so is her situation. What concerns blood bankers on a daily basis is a more common condition caused by uncommon blood. Sickle cell disease is predominantly found in African-Americans, and thalassemia among South Asians, and both conditions require precisely matched blood. But there is a shortfall between ethnic minority patients who need blood, and ethnic minority donors. In New York, Caucasians are 35 percent of the population but 58 percent of donors. Twenty-eight percent of New Yorkers are African-American but only eight percent of donors, and that’s after five years of hard work and outreach by the New York Blood Center with its PreciseMatch campaign.

Even so, there was trouble when the Blood Center began in 2009 to offer the option to “self-declare” ethnicity on its donor forms. This was efficient: without a budget to precisely screen every donation, they could home in on antigens known to be specific to certain populations. At first there were problems, when staff members were initially upset by this apparent division of blood by ethnicity. “We didn’t educate the staff,” says Dr. Westhoff, “to know that we weren’t segregating the blood just to be segregating. We were doing it to send all the African-American units to the sickle program children because they were doing much better with blood that came from this same ethnic group.”

The stem-cell struggle: Multiracial patients’ hunt for a match

As someone who has undergone this gruelling treatment, and who did not have the same challenges in finding a donor (mine was from Germany), important to encourage minorities to consider being a donor to improve the chances of those who need this treatment:

Hundreds of Canadians are waiting for stem-cell transplants, but only half of them will find a donor, according to Canadian Blood Services. For multiracial patients, the chances of finding a match are infinitely smaller. As Vancouver filmmaker Jeff Chiba Stearns discovers in his new documentary Mixed Match, it is akin to finding a needle in a haystack or winning the lottery.

Stem cells, which are typically collected from blood or bone marrow, are cells that can develop into other types of blood cells, including the white blood cells that make up one’s immune system. For those with blood disorders and cancers, such as leukemia, a stem-cell transplant can be life-saving.

For Mixed Match, which is showing at the Toronto Reel Asian International Film Festival on Nov. 15, Chiba Stearns spent six years filming multiracial recipients, donors and families who’ve searched the world over for a match. The Globe spoke with Chiba Stearns about why patients’ chances of survival are linked to their lineage.

Why is it so hard for people of mixed race to find suitable donors?

A lot of people think of it as blood. You know, like, I have type O-negative blood. But this has to do with your genetic background, what you would call a “genetic twin.” Basically, when you’re trying to find your genetic twin, a lot of times, it’s someone who has similar ancestry, so someone who comes from the same place you came from because that would mean your immune systems would be very similar.

So, say, in Japan, which is a very homogeneous country, they have a very small pool of people in their registry, but you can still find a match most of the time. What happens when we start mixing is our genetics get a little more complex.

….Why do some people object to recruiting donors by specific ethnic groups?

When it comes to race and ethnicity, the idea of filling out the box and categories can be a little challenging to some people because maybe they don’t want to be labelled or put in boxes.

But at the same time, this is how we categorize people because we need to know, if I am part Japanese and part European, where do we need to start looking? Do we look in Japan’s registries? Do we look overseas?

And sometimes these categories may not be as accurate as people think because it’s self-identified race and identity. We don’t always know. Sometimes it opens up skeletons in the closet, like people may not have realized their great-grandma was Korean, for example, and nobody talked about that.

The idea of race in medicine is sometimes controversial because there have been drugs targeted specifically to African-Americans. Or when people say cystic fibrosis is mainly a “white people” disease, or certain types of diseases are more common in certain races, I think that’s when you get racial scholars coming up in arms because it’s dividing people by race.

It gets complicated, though. As you showed in your documentary, someone with Latino heritage might end up being a good match for someone who’s Asian.

This is why it’s tricky because we often say, if you’re Chinese, you need to find another Chinese donor. But there are rare cases, where, let’s say, an African-American person has donated to someone who’s Caucasian. It may not be a perfect match, and that’s probably what’s happening: These probably aren’t perfect matches.

That’s why I think we always encourage anybody and everyone to sign up. And because registries ask for self-identified race, sometimes you just don’t know whether there’s some kind of mixing in one’s heritage.

Source: The stem-cell struggle: Multiracial patients’ hunt for a match – The Globe and Mail

Desperately Seeking Normalcy – Stem Cell Donors – New Canadian Media – NCM

These kinds of campaigns that personalize the issue are likely more effective than impersonal campaigns. And engaging the key communities is key to address the shortage.

As my experience attests, a stem cell transplant is no picnic with considerable risk, but does offer more time to those patients who can benefit from it:

“I think people are just so afraid of the process,” adds Nishaat. “They really feel like you’re taking something from them that cannot be replaced. When you look at minorities, even religiously speaking, the whole notion of organ donation is a major issue. So when it comes to bone marrow or stem cells, I think some of that falls into the same category. In terms of the mentality.”

The cultural stigma is so strong that some discourage their family from accepting donated organs even if a match is found. In one case, a Stanford professor had found a match for a South Asian couple’s 20-something son, but the young man’s parents convinced him at the last minute to refuse the donation.

South Asians 4 Life is one group partnering up with CBS in trying to combat the deep-rooted stigma through awareness campaigns. According to their website, 5,000 South Asians have registered with the OneMatch Stem Cell and Marrow Network. As of 2011, there were nearly 1.6 million South Asians living in Canada, the largest visible minority group in the country StatsCan. At the time of this article, 28 Canadian patients of South Asian descent were also reportedly waiting for a match.

“People actually have the opportunity to change the numbers,” says Munsif. “To make a positive impact. If they knew about it and if they thought or understood it could happen to their loved ones, they would have no hesitation to do it.”

Munsif says various community centres in the GTA have been “very supportive and extremely accommodating,” of their cause, by holding bone marrow donor drives more than two years ago in Nishaat’s name. From there he realized there were many misconceptions about signing up to be a donor.

Desperately Seeking Normalcy – New Canadian Media – NCM.

Cancer fight puts focus on lack of minorities on stem-cell donor lists

Periodically, articles emerge regarding the need for more donors from minority communities (e.g., Asian British Columbians less likely to be organ donors). This latest, thanks to a social media campaign launched by Mai Duong, a leukaemia patient in Montreal, pertains to the need for stem cell donations, used to transplant new immune systems to patients with a range of blood-related cancers.

Having benefitted from a stem cell donation to treat my lymphoma, and without the challenges of finding a donor given my European ancestry (my donor turned out to be a nice young German man), I can only urge those of you of whatever extraction to consider donating stem cells. The Canadian link is OneMatch Stem Cell and Marrow Network, in Quebec, Héma-Québec:

But Duong, 34, has discovered that locating the right person can be a needle-in-a-haystack challenge, particularly for those who are from a non-Caucasian background.

“This is a global problem,” Duong, who is of Vietnamese origin, said in an interview from her room at Montreal’s Maisonneuve-Rosemont Hospital.

“We can’t do a scavenger hunt every time someone has this type of problem.”

…. Canada Blood Services, which manages the stem cell and marrow registry outside Quebec, says 340,837 people are currently registered in the rest of the country. Of them, 71 per cent are Caucasian, with the rest qualifying as “ethnically diverse” or of unknown origin.

Hema-Quebec, the organization that manages the province’s list, says about three per cent of the 47,000 stem-cell donors are of Asian descent and only a fraction of those are Vietnamese. The ratios are similar among international donors and Vietnam doesn’t have a registry of its own.

Cancer fight puts focus on lack of minorities on stem-cell donor lists.