Canada's cord blood system

As a bit of backup insurance, Helena and Greg Housser* of Milton, Ont., decided to deposit their babies’ umbilical cord blood into a blood bank. As with any insurance, they didn’t expect they’d ever need to draw on it. But when their eldest child, Sam, was only four, he developed acute lymphoblastic leukemia, a fast-growing cancer of the white blood cells and one of the most common childhood cancers. The standard treatment: two to three years of intensive chemotherapy. But the Houssers had another option: using the cord blood they’d banked. They couldn’t use Sam’s own sample, which contained the rare genetic mutation that caused his disease. But his three-year-old brother’s was a good-enough match, and his baby sister’s a close second. Sam underwent a procedure that killed all his own white blood cells. He was then injected with his brother’s cord blood and within a year, he had a new, fully functioning blood system.

Today, at almost nine, Sam is a tall, lanky, sports-loving kid with long hockey hair and no sign of the disease. And Helena, a lawyer, and Greg, a police officer, are exceedingly grateful they happened to see a flyer about cord blood in their obstetrician’s office when Helena was first pregnant.

It does seem like an obvious choice. What parent or parent-to-be wouldn’t want to do everything possible to ensure the healthiest future for their child? Yet things are not that simple with cord blood banking. “It’s viewed as insurance and it’s certainly promoted as such,” says Anthony Armson, head of obstetrics and gynaecology at Dalhousie University in Halifax, a physician with IWK Health Centre and lead author of the Society of Obstetricians and Gynaecologists of Canada’s guidelines on cord blood banking. “But there’s still a lot of uncertainty in this field, and I’m not sure parents are completely informed of the limitations.”

*Names changed by request.

Why cord blood matters

Cord blood is the blood left in the umbilical cord and placenta immediately after a baby is born. It’s rich in stem cells, remarkable master cells that have the ability to develop into many other types of cells, including bone marrow, red or white blood cells, organ cells, platelets and cells of the immune system. Cord-blood-derived stem cells have been used worldwide in more than 7,000 patients to treat at least 70 diseases, including acute and chronic leukemia, lymphoma, solid tumours, thalassemia, sickle cell disease and severe aplastic anemia. As well, stem cells hold promise to be used one day in treating spinal cord injury, cerebral palsy, diabetes, heart disease, stroke and Parkinson’s disease.

But cord blood banking is still in its infancy in Canada and is nowhere near the level of other blood services. It’s not even available in many parts of the country. There’s a two-tier system, with a severely underfunded public sector and a fast-growing for-profit private sector that charges parents an 18-year storage fee of at least $2,500. Standards of collection and storage vary. And the Society of Obstetricians and Gynaecologists of Canada still doesn’t endorse doing what the Houssers did: privately bank your baby’s cord blood just for your family’s use.

Wasted opportunities

Therapies using the stem cells in cord blood seem to have several advantages over other methods (such as embryonic stem cell or bone marrow transplants). For starters, these aren’t embryonic stem cells, taken from aborted embryos or engineered in a lab. Stem cells from umbilical cord blood are considered ethically, morally and religiously acceptable (except by Jehovah’s Witnesses, who generally oppose all blood-related treatments). Cord blood stem cells proliferate so rapidly that one sample of cord blood can reconstitute the entire blood system. A bone marrow transplant can do the same, but with cord blood, a less-than-perfect match can work. Stem cells from cord blood are also less likely to be rejected by the host than those from a bone marrow transplant. But of the 364,000 births in Canada last year, almost 350,000 of these precious cords were thrown away as medical waste.

That’s a crying shame to Jane Virro, who speaks for both the private and the public sides of cord blood banking. She’s the administrative director of Cells for Life (the service the Houssers used), a private cord blood bank founded in 1997 in Markham, Ont. But Cells for Life, which parents pay for, funds a public cord blood company called the Victoria Angel Registry of Hope Public Cord Blood Bank, to which parents can donate and also access if they need to. “If you don’t want to store the sample for yourself, please don’t throw it in the waste,” Virro pleads. “Donate it!”

Combined, the two companies have a total of 20,000 samples of umbilical cord blood stored at a laboratory in Toronto General Hospital. Bags of cord blood samples arrive daily to be checked, processed, labelled and carefully frozen at a computer-controlled rate. The samples are then placed in a frame on a long metal rack and lowered into one of the cylindrical stainless steel freezers, which look like gigantic, high-tech, lidded coffee Thermoses. If you were to take the lid off and peer down inside, you’d see the racks of samples swirling amid what appears to be steam; in fact, it’s liquid nitrogen, which keeps the samples frozen at a temperature of -190°C. The seven-day-a-week, state-of-the-art operation is protected by security cameras, card-swiped doors, backup liquid nitrogen supplies and electrical systems, and the hospital’s own security system.
It’s an impressive operation, with samples coming regularly from major Canadian and US cities, and as far away as Hong Kong, the Philippines and Europe. But it’s just one bank in a country that lags behind other countries, including the US, most European countries, Australia and Japan. The system is a patchwork: There’s no national bank; there are close to a dozen private banks, all of them centred in Toronto, Vancouver and Edmonton; and there are three public banks. In addition to the Markham one, there’s Héma-Québec, which deals with several Montreal hospitals and one in Quebec City. And there’s the Alberta Cord Blood Bank, which has no stable source of funding and responds to emails with nothing more than automated messages. In the rest of the country, there’s nothing.

It’s not as though cord blood transplants aren’t happening in Canada. In 2006, the Canadian health care system bought at least 45 public cord blood samples from other countries to treat Canadians at a cost of $25,000 to $30,000 US per sample, or a total of about $1.3 million US. Virro says that we should use that money to build on the public bank system: “With quick matching and easy access to samples, sick Canadians will be treated earlier and have less rejection, and the realized savings to the health care system will fund the public system easily.” Virro says her company already has the infrastructure, experience and equipment to accommodate a huge public bank, but it needs government money to finance it. Right now it gets all its money from the profits of the private family cord blood company and donations from physicians, companies and private donors. It’s important to note that in a public system, there is no guarantee that people would be able to get their own sample back if they require cord blood. It would be more like blood donations and transfusions — donors give freely, and then when they need it, they get whatever is considered the best match for them and from the closest location.

Armson agrees that Canada needs a national public bank, just as we have with regular blood donations, which are regulated by Canadian Blood Services. “At the moment Canada does not have a registry that’s part of the worldwide program, so there’s certainly some pressure on Canadian Blood Services to establish a national cord blood bank,” he says. In fact, Canadian Blood Services submitted a business plan to deputy ministers of health at the end of 2008 about the urgency of setting up either a central public bank in Ottawa or a network of public banks across the country; the deputy ministers have yet to respond.

Realistic expectations

While Armson fully supports what he hopes will one day be a strong national program, he has serious reservations about the state of cord blood banking today. First, he says the chances you’ll ever need to access your baby’s cord blood sample are extremely low — between one in 5,000 and one in 20,000 (although a 2008 US study suggested that the lifetime probability that someone will need to use their own cord blood stem cells for current treatments may be as high as one in 435). Second, even if you do use the sample for your child, success is not guaranteed. Studies show that overall survival rates of related donor cord blood transplants are approximately 60 percent. Also, the majority of samples contain so little blood that they’re usable only in children; they may not be large enough to treat bigger children or adults.

Finally, Armson is concerned about the way some private banks try to sell the service to prospective parents. “Many cord blood banks are linked to IVF [in] programs, so there’s a pretty significant marketing strategy involved,” he says. For instance, some banks tell parents quite correctly that leukemia is the number one disease killer of children, without also telling them that the cord blood sample of a child who develops leukemia probably can never be used, as it may carry the genetic mutation that caused the disease in the first place. Many cord blood transplants have been between siblings, which means that singleton children may be less likely to benefit from their own cord blood samples. And if he were to become a father today, Armson cautions, “At this point I’m not sure I would choose to store cord blood unless I could do it in a public system that was on firm financial footing.” As for using a private bank, he says, “I would still say there’s not sufficient evidence to support doing that.”

But tell that to Patrizia Durante. When the 26-year-old Laval, Que., woman was 6½ months pregnant with her first child, she received a devastating diagnosis: She had leukemia. While in hospital, Durante started reading a parenting book given to her by her husband, which made a mere mention of cord blood banking and its promise to treat leukemia. Labour was induced at 31 weeks and Durante had her baby’s cord blood taken, even though her doctors were skeptical about its value. Four months of intense chemotherapy followed. She went into remission, but relapsed two months later, and she was told she had six months to live. Her doctors wanted to do a bone marrow transplant, but no match could be found. Durante reminded them about the cord blood, and they reluctantly agreed to transplant it, even though it was a tiny sample and a less-than-perfect match.

Within three months, Durante had no trace of the illness. Today, almost eight years later, she feels she owes her life to cord blood banking and to her little girl, Victoria. “Cord blood banking is just so easy,” Durante says. “I can’t understand why you wouldn’t do it, or at least donate it so that you could help someone else.”

How is cord blood collected?

The ideal window for collecting cord blood is during the few minutes after the baby is born and before the placenta is delivered. All the necessary equipment comes in a kit, ordered before the birth. The procedure takes about five minutes and is painless.

After the cord is cut, a trained doctor, nurse or midwife pierces the vein in the part of the cord still attached to the placenta. By force of gravity, the cord blood drips into a sealed bag, similar to the type of bag used when you donate blood. The collection system should be “closed,” ensuring that the blood never comes in contact with the environment. The total amount is usually 50 to 150 millilitres (about 1½ to 5 ounces). There’s no risk to mother or baby, although in emergencies the health and safety of mother and baby always take precedence over collecting cord blood.

The sample is sent by courier to the lab and must be processed within 48 hours. It is then frozen for storage in a cryogenic facility. When properly stored, cord blood has so far been shown to remain in perfect condition for 15 years, and research suggests it may last far longer.

Vetting the banks

To help you navigate this complex world, here are some questions to ask:

Is yours a private or public bank? Private banks are commercial businesses. Public banks are funded by government money or foundations.

When did your bank first start collecting and storing cord blood samples? Look for a track record.

How many samples are you storing? More than 5,000 may suggest financial stability.

What kind of accreditation do you have? All banks must abide by Health Canada’s guidelines regarding cells, tissues and organs. But look also for accreditation by (and not just membership in) AABB, formerly the American Association of Blood Banks and now an international association involved in activities related to transfusion and cellular therapies, or the Foundation for the Accreditation of Cellular Therapy.

How many transplants have been performed using your bank’s samples? Ask about success rates.

Do you train health professionals in the collection of cord blood? Proper training helps ensure not only the safest, but also the largest possible sample.

What happens if the sample is of insufficient quantity or quality? Find out if the bank automatically rejects the sample or stores it anyway, and ask if you’ll be notified. Storage standards at private banks are more likely to vary, while public banks have tighter criteria.

What happens if there’s a power failure? Reputable banks have backup energy sources to ensure the samples stay frozen.

How much will it cost? A private bank may charge an initial $900 to $1,800 to collect and process the sample, then an additional $100 to $150 a year to store it. Find out if the storage costs are fixed until the child is an adult, or if they could go up each year. Some companies offer payment plans. There should be no charge to donate a sample to a public bank.

Who do I contact if I ever need to use the sample? Make sure you know the procedure.