Losing Patience

Ontario patients support stem cell research – now they need help navigating to real treatments

By Krista Lamb

Doctor checking patient's kneeAlmost every day, OIRM’s Senior Manager of Science and Industry Relations, Jodi Garner, receives questions from patients who are curious about stem cell treatments and where they can go to receive one.

They call for themselves, for a child, for a loved one, and each of them shares the desire to diminish pain, cure a debilitating illness or save a life. They are frustrated and scared, looking for any hope that the issue they are dealing with can be solved. Often, they have seen an article or advertisement touting a stem-cell-based solution and they want to know how to access it.

For Garner, it can be hard to explain that stem cell science is still very much in the early stages. There are few clinical trials accepting patients in Canada and the criteria is often very specific for those that are. “People call or email OIRM and think stem cell therapies are already available,” she says. “They aren’t aware of the level of testing that needs to happen before a treatment can go into patients, or the need for rigorous standards to ensure they are safe. They see ads in the paper for therapies that I know are not Health Canada approved and just assume that this is something they can get access to easily.”

It can be heartbreaking to explain that these treatments are not yet available, but it’s also important to inform people about the status of these programs and the reasons Canada has such strict rules for these therapies. “Stem cells are not drugs that will just leave your system in a few days if you have an adverse reaction or they don’t work,” Garner explains. “These are living cells that once put into a patient cannot be retrieved if something goes wrong. Scientists need to rigorously test stem cell therapies to ensure they work properly and don’t cause more harm than good. The potential for these treatments is enormous, but we need to make sure they are safe, and this can take a long time.”

For patients, this can be confusing, especially when they see ads for therapies being offered at clinics across the country—not realizing these therapies are unregulated. They may have heard about the successful use of stem cell treatments for disease such as leukemia, where stem cells have been shown safe and effective, and assume that this sort of treatment can also fix their hip or knee problems. OIRM has been pleased to see Health Canada cracking down on clinics who are offering cell therapies that have not gone through clinical testing and met Canadian  standards.

Still, with each email she sends or call she takes, Garner knows that the patient on the receiving end of her message will be disappointed. Anyone dealing with a serious medical issue is looking for help and the hype around stem cells can be alluring. “We know the potential is there,” she says, “But it’s only been since the 1990s that stem cell treatments truly started to show promise. Compared to other areas of medicine we are still in the early days, but for someone who is in pain now, ten more years of clinical testing seems like an eternity to wait.”

Garner and the OIRM team would like to see more context in articles about stem cell therapies, as well as more education for clinicians about the progress of these treatments. She often receives calls from family doctors, or patients referred to her by their GP, where it is clear that the physician is equally unaware of the status of these treatments. “Clinicians not having appropriate information on cell therapies to give their patients leads to patients looking for the answers themselves,” says Garner. “This often leads them to unregulated clinics or sites full of misinformation. Clinicians need to know more so they can better support their patients, but right now there has not been enough investment in helping disseminate that information. This is a role OIRM is hoping to play moving forward.”

For Garner, patient involvement is also critical in moving regenerative medicine therapies into the clinic and she knows that there is no shortage of people ready to take part in a clinical trial or to accept a new therapy. She hopes patients will continue to support and advocate for increased funding for stem cell research, as well as better access to education on these treatments and more involvement in clinical trials.

“At OIRM we do our best to answer each patient who has a question, to help them make good choices and to keep them safe. However, for each person that reaches out to us, there are many more that don’t. They may spend money on unproven treatments that don’t work or, worse, that cause more harm,” she says. “We need to be working alongside patients, clinicians and the regenerative medicine community to ensure that everyone has the information they need to stop potentially harmful therapies and to propel the ones that work into the clinics. Patients play an essential role in moving regenerative medicine forward in Canada.”

For more information, visit OIRM’s Patient Resources page.

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