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.