Well, it turns out I don’t have cervical cancer. At least, that’s what Cancer Care Ontario (CCO) has told me in an unsolicited letter. Like many women, I usually expect to hear from my doctor if there are abnormal results. No news has been good news in the past. Getting my Pap test results from CCO in the mail was a bit of a shock.
I had heard about these letters from Ayesha Adhami, who runs a women’s sexual health centre in Toronto. She was concerned for her teenage clients, some of whom have little privacy. Lots of moms would find it difficult to resist opening a letter with the word “cancer” in the return address. So a young woman may find that her Pap test results have already been read by a snoopy parent or guardian—and that’s not good.
I called the number provided to ask some questions and to give them feedback about the letter and its accompanying pamphlet. The woman I spoke to was pleasant and took notes.
I first expressed surprise at receiving a letter from the provincial government about my Pap test results.
She said women were supposed to receive an initial letter to advise them of follow-up letters. I didn’t. Like cable companies who operate on an “opt out” system, if you don’t call when you receive the first letter, you will continue to receive them.
I shared my above concerns about confidentiality. She commiserated.
Then I painstakingly reviewed the letter and pamphlet while she listened patiently.
- The letter includes the following: “See your health care provider if you have unusual bleeding or discharge from your vagina” [my emphasis]. All women have discharge from their vagina. Even if they had said “unusual discharge” this would hardly be considered a sign of cervical cancer.
- The opening statement in the accompanying pamphlet, “Cervical cancer is caused by an HPV…infection” is also concerning. The overwhelming majority of sexually active people will get HPV at some point in their lives and 90% of them will clear the virus without medical intervention within two years. There is a difference between brevity and clarity. In this case, brevity is just plain scary.
- Nowhere in the pamphlet do they make the distinction between low-risk and high-risk HPV. The word “wart” does not appear anywhere. When a woman is told she has an HPV wart, she may worry she is at risk for cervical cancer, which is not the case.
- On the back page, they give the number to call to opt out. Too little, too late.
The CCO representative told me that within a year, a letter will be sent to Ontario women who haven’t been screened in the past three years. That’s a good start, but it hardly deals with the full scope of the issue.
Women who are at most at risk for cervical cancer are poor, marginalized or Indigenous. These are the most important women to reach. With the advent of a three-year interval between Pap tests, even women who have been regularly screened in the past may not remember to go unless they get a call from their family doctor—if they have a family doctor. If a reminder letter goes out from the province, it will not reach women with no fixed address who are living in shelters, living rough or couch surfing.
There is an additional risk for women over 30, who have had serious abnormal results but don’t get a follow-up examination or treatment.
And that brings me to the big issue: who should run Pap registries across the country, how should they function and how can they inform women in a simple, but not simplistic, manner?
Ayesha checked out the system in Manitoba and discovered the following:
- Women have to opt out there too.
- Cancer Care Manitoba (CCM) keeps a copy of your Pap results.
- CCM allows you to obtain your own test results.
- They send a letter to your health care provider if you don’t show up for a post-abnormal Pap follow-up.
- They send you a letter if you are overdue for your Pap or haven’t followed up on an abnormal Pap. (Read more on CCM website)
Although there are some positive innovations here, Ayesha is not entirely sold. She suggests that “to be truly client-oriented and confidential,” a Pap registry should not put the onus on women to opt out. She adds that “all notifications should be restricted to logging into a registry website. The only thing that should come to your home or email or phone via text,” she says, “is a notification to log in to the website for a notification about your healthcare…”
Of course, the problem remains for women who do not have regular access to the Internet. Remote (Indigenous) communities with inadequate Internet access are amongst the women most at risk.
One wonders whether women’s health advocates and consumer groups were consulted at an earlier stage for these systems. Ayesha says she first she heard of the letter when clients came in to her centre, waving it and demanding to know what it was all about. Clearly no advance warning was given to front-line health facilities. Another local sexual health clinic has posted a disclaimer on their website: “Please be advised that Cancer Care Ontario (CCO) has started sending correspondence without patient permission…They are initiating a Cervical Screening Program where they will be mailing your test results and other correspondence to the address associated with your Ontario Health Card. This will happen automatically unless you ‘opt-out’.” (Read the disclaimer).
Hundreds of millions of dollars are spent on the HPV vaccination program. Those of us who have been advocating spending this money elsewhere—on a well researched registry system and coverage for HPV testing as follow-up to abnormal Pap results—are still waiting. In the meantime, I prefer to get the results of my Pap test from my doctor.