(CP) – Tania and Michael Gurr are expecting their first child in July, and among the decisions the soon-to-be parents must make – from what colour to paint the nursery to the best car seat to buy – is one born from the promise of medical technology.
Should they bank their newborn’s umbilical cord blood in case their child might one day need the regenerative stem cells it contains?
“We’re kind of sitting on the fence,” admits Tania Gurr, a doctor’s assistant at a Toronto hospital. “The thing is we know the potential that it could be used for, so we’d like to give our child every advantage that we can.”
“But the initial costs and the cost every single year after that is expensive. It’s very, very expensive.”
Depending on the private bank, the price tag for depositing cord blood starts with an average initial fee of about $1,000, plus $120 or more per year to keep it viable in the deep-freeze of liquid nitrogen.
There are less than a dozen private cord blood banks in Canada, located in Ontario, Alberta and British Columbia, a number that is likely to grow as researchers push the frontiers of medical science and bring the promise of stem cells for regenerating organs and other tissues closer to reality.
But that day is not here yet, and many experts believe that some in the industry are playing fast and loose with parental fears in order to sell pricey biological insurance that only an estimated one in 20,000 children would ever need. At the worst, they say, some private banks may be luring parents with false promises of what current science allows stem cells to do.
Two years ago, the Society of Obstetricians and Gynecologists of Canada (SOGC) issued lengthy guidelines for doctors and other health providers, as well as recommendations for parents thinking of banking their child’s cord blood.
“It indicates that should you choose private banking, the chance that you’ll ever have to access that is extremely remote,” explains the SOGC’s Dr. Vyta Senikas.
“Our concern at the end of the day is that the patient truly understands this and that certainly if the patient considers private banking, she understands exactly what she’s getting into and the fact that there will be a payment,” Senikas says.
“The other issue is how you sell it to the patient. You’ve got to be above-board and ethical here.”
Dr. John Akabutu, a professor of pediatric hematology-oncology at the University of Alberta, says there’s a great deal of confusion among Canadians over private versus public banking.
“I think what is happening in the world today, and not only in Canada, is this issue about the promise of stem cells,” says Akabutu, executive director of the Alberta Cord Blood Bank in Edmonton, which provides both public banking for anyone in need with a proper tissue match, and a private bank for individual deposits.
“And the possibility is looking really good that these cells might be usable for organ repair or organ Regeneration,” he says, predicting that intense worldwide research into stem cells could start making those hopes reality within 10 to 15 years.
“If somebody’s storing cord blood stem cells privately in our program, this is what we emphasize to them, that this is the reason to store it, because you can never retrieve these stem cells after they’re thrown away.”
Public banks are strictly for stem cell transplantation among unrelated people, used in the treatment of diseases such as cancer, immune disorders, metabolic disorders and bone marrow failure disorders, Akabutu stresses.
“The public bank exists to help those individuals who need a transplant but cannot find donors.”
What cord blood stem cells can do right now is what bone marrow transplants have traditionally done: rebuild the blood and immune systems of a child (and increasingly of adults) whose bone marrow has been damaged or destroyed from treating cancers like leukemia or from immune system-related disorders.
But because the seeds of leukemia, for instance, are likely present in the child’s cord blood at birth, using their own stem cells to produce new oxygen-carrying red cells, infection-fighting white cells and platelets would only set them up for recurrence of the disease down the road, says Akabutu.
“If you use somebody else’s (donated) cord blood, you are not transplanting any potentially leukemic cells into the person and the stem cells that you transplant recognize the person’s cancer (cells) as being foreign, so they react against them and try to eradicate them,” he says. “If you use your own cells you will not have that.”
“The only time you can use a private bank for transplantation is – and this has been done in Canada and that’s why people make a lot of noise about it – is say if a child develops a cancer that does not affect the bone marrow.”
One powerful example of that scenario involved an Ontario boy who became the first person in North America to use his own stem cells to resurrect healthy bone marrow, known as an autologous transplant.
When Lisa Farquharson gave birth to Jesse seven years ago, she and husband Gary took the advice of her mother, a registered nurse, to store their infant son’s cord blood with a private bank, despite the hefty cost and an apparently benign family medical history.
What drove the decision were the “what ifs,” says Farquharson from her home in Dorchester, Ont., just east of London. “What if my child had a spinal injury? What if my child got some disease? Or what if my child had cancer? . . . I know my personality and if something happened and I had known that I could have done something and I passed up on that, the guilt just would have been too much for me.”
“We just thought it’s biological insurance, it’s a safety net if something happens.”
It turned out to be prescient move. Four months later, Jesse was diagnosed with retinoblastoma, a rare form of eye cancer. While chemotherapy destroyed the tumour, it also ravaged his immune system, and the only treatment that could save him was a bone marrow transplant – or stem cells.
“If you looked into all the critics (of private cord blood banking), we were the family who should never have banked it and we were the first family to use it,” says Farquharson. “You can have all these statistics and odds and everything else, but when it’s your child, it doesn’t matter anymore.”
“If I had listened to the critics, my son might not be alive right now.”
Still, transplants using a child’s own stem cells are extremely rare and only about 30 per cent of samples would even match a sibling. That’s where public banks come into play.
Currently, only two public banks exist in Canada: the Alberta Cord Blood Bank, funded in part by its private affiliate, the Canadian Cord Blood Registry; and one operated by HEMA Quebec, the province’s equivalent of Canadian Blood Services. Both are enrolled with international cord blood registries, allowing Canadians in need of stem cells to seek a match with donors from other countries and vice versa.
Canadians who donate their child’s cord blood to a public bank give up rights over its use: it will go to a recipient most in need and with the best tissue match, in much the same way that donors and recipients for bone marrow transplants are chosen.
“It belongs to the public in general, so it’s not identified as belonging to a family,” says Andre Roch, vice-president of public affairs and marketing for HEMA Quebec, noting that the province prohibits private banking.
“Really the blood cord is thrown away in 90 per cent of the cases, so we just tell the people why it’s practical to have a cord blood system, but contrary to (those for) private use, it’s really a public system.”
The transaction is altruistic: neither donors nor recipients pay, although the hospital performing the cord blood transfusion antes up about US$25,000 to help defray a bank’s storage costs, which run to at least $500,000 per year.
But discussions are under way to implement a national public cord blood bank for Canada, which would collect and store donations without charge to parents and provide them to any Canadian recipient in need for free.
The goal is to accumulate enough cord blood samples to represent the ethnic diversity of the country’s population. Private cord banks could continue to operate as well.
The SOGC has also been charged by the Public Health Agency of Canada with compiling a report on the feasibility of a national public bank, with updated recommendations on the collection, storage and other issues arising from this burgeoning field, including emerging pathogens, privacy and ownership. It is expected to report to the agency in the next few weeks.
At the same time, the provinces and territories have asked Canadian Blood Services to draw up a business plan for operating a national public bank, says Sophie de Villers, CBS vice-president of strategy management. The blood-banking agency has drafted recommendations that will be discussed with experts in the field during a meeting in early June, with a report to be presented to the deputy health ministers late next month.
“We believe Canada should have a publicly accessible cord blood bank that’s national in nature,” says de Villers, noting that a recent survey shows Canadians are overwhelmingly in favour of such a publicly funded institution.
It’s an idea that also resonates with Tania Gurr as she wrestles with the decision over whether to bank her own baby’s cord blood. At the least she believes such services aimed at improving the population’s health should be covered by provincial medical insurance.
“If everybody’s sitting there saying this is such a great thing and this is the latest technology . . . it should be available to every parent to help save their child,” she says.
“It’s kind of like prenatal vitamins. Everybody says you should have them, but nobody covers them.”
By Sheryl Ubelacker