It’s a straightforward pitch to expecting parents: Pay a private clinic to store your baby’s stem-cell-rich umbilical-cord blood, and rest assured that he or she has protection for life. Multiple sclerosis, cerebral palsy, diabetes, traumatic brain injury, stroke, brain tumours and even Alzheimer’s disease are just a few of the ailments stem cells may be able to treat or cure in the future.
The optimism is contagious. Tens of thousands of Canadian families have made the decision to pay thousands of dollars to bank cord blood. But beyond the websites and brochures featuring photos of smiling babies and testimonials from families, a different picture is emerging – of an industry that uses inflated arguments, aggressive marketing and misleading information to convince parents to buy in.
“I don’t know if the families are walking away with an entirely honest picture of what they’re buying,” says John Doyle, former head of blood and marrow transplants at Toronto’s Hospital for Sick Children. “I don’t think that parents truthfully understand the limits.”
“There’s a long-standing history of overinflated promises by the cord-blood banks,” agrees Donna Wall, director of the blood and marrow transplant program at CancerCare Manitoba. “I could have retired many times over if I had gotten into the business. It’s just not the right thing to do.”
Full of promise
The stem cells found in umbilical-cord blood have the ability to turn into red or white blood cells or blood-clotting cells. For that reason, they offer promising treatments for leukemia, lymphoma, sickle cell disease and other blood, bone, immune and metabolic disorders.
Adults also carry these stem cells, which is why Canadian Blood Services has a campaign to recruit people to join OneMatch, its network to connect stem-cell and bone-marrow donors to patients. But finding a suitable donor is much more difficult than simply matching blood types. Patient and donor cells must match 10 out of 10 human leukocyte antigens or proteins found on the surface of cells. Donor registries are limited and seldom diverse enough to serve patients of all ethnicities.
Hence the excitement over umbilical-cord-blood stem cells: Not only are they “young” and less likely to lead to complications, they need not match as precisely as adult cells.
“This has just opened up so many more possibilities to patients in need,” says Sue Smith, executive director for stem cells at Canadian Blood Services.
But Canada is the only Group of Eight country without a national public registry for umbilical-cord blood. There are three fledgling public banks in Alberta, Quebec and Ontario, but they have been faced with funding and logistical challenges. Plans are finally under way to launch a national registry next year. But in the interim, for-profit clinics have moved to fill the void.
It has become common for women to see ads for cord-blood clinics in their doctor’s offices or on popular pregnancy and parenting websites. The cost to sign up is typically around $1,000, with annual fees often running between $100 and $150.
Insception, one of the country’s oldest and largest private banks, with a head office in Mississauga, boasts that it has nearly 40,000 cord-blood units in storage. Lifebank, a Burnaby, B.C.-based bank founded in 1996, says it has about 15,000. (A unit refers to the blood collected from the umbilical cord and placenta).
The website of Cord Blood Bank of Canada, based in Markham, Ont., sums up the appeal: “Stem cell therapy may provide your baby, a sibling, or a young family member the best chance to beat cancer. Or it may enable your child to regenerate lost heart or brain tissue due to injury or disease. If you are a soon to be parent, it could be your ONE opportunity in this lifetime to ensure the future health of your entire family.”
Yet while scientists are hopeful that one day they will learn how to use stem cells to treat ailments beyond the ones they do now, from Parkinson’s to diabetes, it’s impossible to predict when or if that wish will be fulfilled.
“I don’t know where the science is going to go. I don’t think anybody does right now,” says Ernest Stacey, president and chief executive officer of Lifebank. “But clearly you’ve got a very interesting cell … and it may have some potential down the road.”
But parents being bombarded with messages about the importance of cord-blood banking may not hear that uncertainty, nor many of the more direct criticisms of the private clinics. The Society of Obstetricians and Gynecologists of Canada in 2005 recommended against private cord-blood banking for personal use because “of the limited indications and lack of scientific evidence to support the practice.”
Hits and misses
Private banks are not required to disclose how many customers ever use cord-blood units or how many are rejected for use in transplants because they are too small. But Insception says that of its roughly 39,000 units, only 12 have been used in transplants, which represents less than a tenth of one per cent. An additional nine units have been released for use in clinical trials.
One of those units was used in Barrett Ross, who was diagnosed with Type 1 diabetes in 2006 at age 9. Upon hearing the news, his mother, Christine, scoured the Internet and found a clinical trial where researchers inject newly diagnosed diabetic children with their own cord-blood stem cells.
The trial was being conducted at the University of Florida in Gainesville, only a few hours from the family’s home outside of Tampa. (While Barrett was born in Toronto and his father, Brian, is Canadian, the family relocated shortly after his birth.)
Barrett was nearly 10 when the infusion took place, and more than five years later, his pancreas still has some function. He takes only one-third the insulin he needed at his initial diagnosis and continues to be in good health. It wouldn’t have been possible if they hadn’t banked his cord blood, Ms. Ross says.
“I know that something happened and it is not definable by anything other than using his cord blood, in my opinion.”
Rita Alexopoulos came to a different conclusion. When she was pregnant last year, promotional materials at her obstetrician’s office in Toronto persuaded her that banking her baby’s cord blood was a great idea.
“I was completely sold at the beginning,” says Ms. Alexopoulos, who gave birth to her son last October. “This is your child. How could you not do that?”
Then she mentioned her decision to a friend who is an immunologist. Instead of congratulating her, the friend offered a wake-up call: The odds that her child would ever need the stem cells were very low. And in many cases, not enough cord blood can be captured to make a unit viable – even the best collections have only enough stem cells to treat a child, not an adult.
Furthermore, when a child needs a stem-cell transplant to treat metabolic or blood disorders, doctors are unlikely to use that child’s own cells – donor cells can spark the necessary immune response to keep disease at bay (though those patients must take immunity-suppressing drugs to prevent graft-versus-host disease).
Perhaps in response to all these limitations, private cord-blood clinics have taken to calling themselves “family banks”: If your child can’t use the cord-blood stem cells, they imply, maybe a sibling, grandparent or other relative can.
But the chances that family members will be a match are quite slim – around 25 per cent, says Armand Keating, director of the stem-cell therapy program at Princess Margaret Hospital and director of the University of Toronto’s hematology division. At that rate, families would be better off simply donating cord-blood to public banks, he says.
Given all that, Ms. Alexopoulos realized she couldn’t justify going with a private-cord blood bank: “It’s really just kind of a scam that people haven’t caught on to yet,” she says.
Taking it national
Typically, when patients in Canada have needed stem-cell transplants, huge sums have had to be spent to find matching donors from international registries: Cord-blood stem cells can cost as much as $43,000 per unit, and since most units are small, usually two must be purchased at a time. Finding donors domestically would save the health-care system a lot of money.
So Canadian Blood Services is now working to get its new national cord-blood registry up and running – collections will start in Ottawa next year, followed by Vancouver, Toronto and Edmonton in 2014. (Focusing on big cities with diverse populations maximizes the potential for finding matches later.)
Many private cord-blood banks are preparing for the competition. Clifford Librach, director of the CReATe cord-blood clinic in Toronto, argues the private option may still be best for many families. He warns that public banks throw away many donations, and that parents who sign away their child’s cord blood may not be able to get it back.
It’s true, Ms. Smith of Canadian Blood Services explains, that public donations have to meet certain standards, or else they won’t be banked. But as CancerCare Manitoba’s Dr. Wall points out, given the slim chance a child will ever use their own stem cells, a public bank is a better option: The more people who donate, the better the chance that patients will find a match.
Private banks will continue to promote themselves as a viable alternative. But parents are not necessarily getting unbiased information. Many clinics, such as Insception and CReATe, pay doctors to provide cord-blood units. Insception also has a partnership with Mount Sinai Hospital and the Scarborough Hospital, in which Insception pays for office space, sponsors research or offers collection fees to doctors.
CReATe’s Dr. Librach says the payment is only to reimburse doctors for their time, as cord collection isn’t covered by the provincial health plan. And Richard Lockie, CEO of Insception, says that establishing relationships ensures better collection and better potential outcomes.
But such links between doctors, hospitals and for-profit clinics look problematic to Victor Han, the Canada Research Chair in maternal and fetal health in the Children’s Health Research Institute at the University of Western Ontario. He compares it to baby-formula companies being permitted to hand out free samples on the maternity ward.
“It is quite a lucrative business for them,” he says, “and I think if I were a parent, then I would probably … have to think twice.”
For all of the hype, however, visions of what stem cells might do in the future may not be entirely unfounded. There’s no telling what scientific breakthroughs may come – some promising clinical trials are already under way. But it will take time.
“[It’s]very hard for me to be emphatic and say with 100 per cent certainty that in the future, this product will never be used,” Dr. Wall says. “There’s nothing in life you can say ‘never’ with.”Report Typo/Error