Quebec corneas wasted while other provinces wait for tissue

While thousands of Canadians wait, sometimes years, for life-changing corneal transplants, Quebec has been forced to destroy viable tissue because of red tape and a lack of co-ordination in the country’s accreditation systems.

Last year in Quebec, 70 healthy surplus corneas were destroyed after other provinces could not accept them, since Quebec’s eye bank credentials aren’t recognized by banks in the rest of the country.

A CBC investigation into corneal transplant wait times and eye banking across the country has revealed the system is largely a dysfunctional patchwork of services, despite the existence of an already-developed Canadian Blood Services plan that, experts say, could eliminate corneal blindness in six months.

"It is sad. It is sad for the patients who are not living well who could be living much better if they were able to see and be more comfortable. It is sad because it's a process that actually can be undertaken anywhere else in the rest of the provinces just like Héma-Québec did for Quebec," said Dr. Mona Dagher, an ophthalmologist with the University of Montreal hospital centre (CHUM).

Quebec system nearly self-sufficient

In 2008, Héma-Québec took over the co-ordination of the province’s three eye bank centres in an attempt to cut down wait times and increase donations.

"Initially, [the] situation with corneal tissue in Quebec was far from optimal," said Dr. Marc Germain, the vice-president of medical affairs at Héma-Québec.

"We realized very soon that, before we would get up to speed with providing tissues within the Quebec population, we would need to go abroad and get tissues form elsewhere in order to meet the demand of patients who could not wait for years while we got the system up and running."

Wait times map

Check out our interactive map to compare cornea transplant wait times in each province.

To fill that gap between supply and demand, Héma-Québec purchased corneas from American eye banks that had surpluses.

The idea, Germain said, was to fill the need while Héma-Québec worked with hospitals on how to approach families and discuss corneal donation in the hopes of increasing the availability of domestic tissue for transplants.

Now, five years later, the system in Quebec is close to reaching self-sufficiency.

Transformative surgery

According to figures obtained by CBC, the average wait time for a corneal transplant in Quebec was under one year in 2012. In 2011, the average patient could expect a two or three-year wait.

In contrast, in Alberta, where eye banks have not turned to the U.S. to purchase tissue from accredited banks, the wait time last year was still up to 24 months.

Corneal transplants are performed on patients who, through injury or disease, have suffered damage to the tissue. In some patients, that damage limits sight. In others, it also comes with significant pain.

The transplant itself can be life-altering for patients who can, in some cases, return to full vision in a relatively short amount of time.

"There is no reason why there should be corneal blindness in Canada," said Dr. Guillermo Rocha, president of the Canadian Cornea External Disease and Refractive Surgery Society.

"We have the ability. We have all the elements in place to eliminate corneal blindness in Canada, and all of those elements need to be working together to achieve that goal."

Accreditation differences

There is currently no standardized national accreditation system in Canada. Prior to 2007, when Health Canada issued its own regulations, many Canadian eye banks adhered to a standard set by the Eye Bank Association of America (EBAA).

In 2008, when Héma-Québec took charge of the system in Quebec, it moved to the Health Canada standard and decided not to pay for EBAA accreditation, since the Canadian regulations were essentially the same.

Other eye banks in Canada that had long-standing accreditation with the EBAA kept that as the standard. As such, they only accept tissue from other tissue banks that are accredited by the association.

That meant that last year, when Quebec officials offered up surplus tissue that existed due to fluctuations in the balance between donation and need, they were met with polite rejection.

To accept tissue from Quebec, those adhering to the American standard would need to audit the Quebec banks independently to ensure they meet the same standard.

"When we offered them those tissues they hadn’t entered into a formal agreement with us and so they were stuck in a situation that they said, ‘Yes, that would be nice to be able to take those tissues, but we need to go through these hoops," Germain of Héma-Québec said.

"It would make perfect sense if, not only from Quebec to elsewhere but also the reverse, if we could share the inventory with the existing eye backs and make sure that no tissue gets wasted, and instead transplanted to someone who needs it."

Toward a national system

In 2011, Canadian Blood Services delivered a plan to provincial and federal health ministers calling for specific fixes to the corneal transplant system. That report, commissioned in 2008, called for the creation of a national registry, eye bank consolidation and inter-provincial cooperation.

A key strategy outlined in the Call to Action report is to jumpstart the system in Canada and clear patient backlogs by acquiring corneas from US eye banks, at a cost of $2,000 to $3,000 each, to boost local supply.

That’s exactly what Quebec did to cut its wait time. However two provinces – Alberta and Manitoba – haven’t implemented that importation strategy.

"I think that if the rest of Canada would follow the approach of Héma-Québec, they would benefit greatly," said Dagher of the CHUM.

"They have a good Canadian example now, why not follow it? They've seen for a while now that the EBAA system has not necessarily advanced them much whereas our Quebec system is wonderful – wonderful for the patient [and] very helpful for the doctor."

CBC News asked for an interview with federal health minister Leona Aglukkaq. Her office declined, but Health Canada officials responded with a written statement.

"Health Canada is committed to working with the provinces and territories and other stakeholders to improve access to transplantation and supports innovative approached to increase the performance of the organ and tissue donation and transplantation system in Canada."