Why aren't cancer patients a higher priority?
Immunocompromised terrified as they wait for COVID-19 vaccine
Nadia Chaudhri's difficult journey began just as Quebec came to a grinding halt last March.
The lockdown induced by the pandemic caused delays and runaround in getting her blood work and other tests done after she started experiencing unusual pains. The 43-year-old's diagnosis, when it came belatedly in June, was brutal: advanced ovarian cancer.
Like thousands of Quebecers who underwent cancer treatment last year, Chaudhri, a mother and an associate professor in the psychology department at Concordia University, had to go through 18 weeks of chemotherapy without a family member or friend to accompany her for support because of the no-visitor policy prompted by COVID -19.
“It was terrifying. It's traumatic,” the Notre-dame-de-grâce resident said. When she had her surgery, she lay in hospital for six days without any visitors. “You feel incredibly vulnerable with the combination of dealing with the cancer diagnosis and this virus. There's nothing. There are no books. The books that tell you how to deal with cancer weren't written for the times of a pandemic.”
Now comes another source of dread: How long will she have to wait to get vaccinated against COVID -19?
Quebec's COVID-19 vaccine priority list places people like Chaudhri — those under 60 years old with a pre-existing condition — eighth in line out of a possible 10 categories. As in other provinces, priority is based largely on age, beginning with the oldest population. So while people younger than 60 with compromised immune systems, including people with certain types of cancer and cancer patients taking immunosuppressant medications, are at greater risk for COVID -19 and severe complications than the general population, they're in a group that comes after all people ages 60 to 69 on the priority list.
Martin Champagne, the president of the Quebec association of hematologists and oncologists (AMHOQ), wrote to the director of the province's COVID-19 immunization program last week to demand higher priority be given to cancer patients, regardless of age, and their caregivers.
“We find that vulnerable populations, such as cancer patients and their caregivers, have not been prioritized,” says the letter dated Feb. 25, a copy of which was obtained by the Montreal Gazette.
Cancer patients can be vaccinated without risk, it notes. The letter also mentions that in the U.S., the Centers for Disease Control and Prevention (CDC) recommends people 16 to 64 years old with underlying medical conditions that puts them at greater risk of serious and life-threatening complications from COVID -19 be vaccinated in the first phase of the rollout, alongside people 65 to 74 who are at high risk.
“People with cancer have suffered, in addition to their cancer, the effect of the pandemic,” said Marco Décelles, director general of the Quebec Cancer Foundation, one of several organizations that he says are supporting the AMHOQ'S demand. “We believe that prioritizing them for vaccination would certainly reduce the anxiety they experience and could allow them to focus on their well-being.”
The Canadian Cancer Society's official position on the COVID-19 immunization program developed by each province and territory is to recommend that they clearly identify when people with cancer will be vaccinated. Elizabeth Holmes, a senior manager at the organization's national level, says that's still not done in most of the country.
“Knowing when someone with cancer might be able to receive a COVID vaccine will help with the already elevated levels of anxiety they're experiencing,” Holmes said. “And then we are asking governments to prioritize people with cancer in the earlier phases of their programs, with others who are at increased risk of more serious disease due to COVID -19, and before the general population.”
The Canadian Cancer Society considers Quebec's 10-category list to adequately meet its criteria, even if the province offers no estimate of the month when people under 60 with pre-existing conditions will be vaccinated and ranks them only just ahead of the general population.
Only Ontario, British Columbia and the Northwest Territories have also met the Canadian Cancer Society's conditions so far, Holmes said.
For Chaudhri, there's no comfort in knowing she's in Category 8 out of 10. Her family remains holed up at home while they wait for her to get vaccinated. On oral chemo now, she only leaves home for required near-weekly visits to the hospital. She and her husband get groceries delivered rather than risk entering the store. Their six-year-old son, who was granted an exemption from in-school learning due to his mother's compromised immune system, attends school virtually at home.
Concerns that the government's vaccine priority doesn't take into account younger people with severe conditions are shared by advocates for people with Down syndrome. They point to countries like France and the United Kingdom that have advanced younger people with certain conditions that put them at greater risk of severe complications from COVID -19 for immunization alongside people in their 70s.
It sounds cold, but Quebec's vaccine priority list makes sense from a purely epidemiological approach, said Hélène Carabin, a professor of epidemiology in the Université de Montréal's faculty of veterinary medicine and the university's school of public health.
“You look at how many people have been hospitalized in certain age groups, with or without co-morbidity,” she said, adding that most hospitalizations and deaths are among those over 60 years of age.
“They're trying to prevent as many hospitalizations as possible and as many deaths as possible.
“You have to vaccinate way less people (who are) 60 and above to prevent the vast majority of hospitalizations and deaths.”
If the health system were overwhelmed with COVID-19 cases, it would slow down the treatment of younger people for other conditions, Carabin said. The older population also counts a large portion of those with pre-existing conditions, from heart disease to cancers to kidney disease, she said.
Nevertheless, the strategy abandons younger people who are at higher risk of severe complications and death from COVID-19, said Catherine Delaney, 43, who has a blood illness that required the removal of her spleen in her teens and left her with a weakened immune system. She went to several doctors before she could get an exemption for her five-year-old daughter, who has the same illness, from in-school learning.
Tudor, who lived in England for five years, said she could have been vaccinated as of Jan. 29 in the U.K. with her condition. Among younger adults in Quebec, she said, “confusion and frankly complete abandonment applies to anything pertaining to `at risk' populations.”
British Columbia appears to be raising the priority of certain pre-existing conditions. Although the order of vaccine priority is similar across all provinces, B.C.'S vaccine rollout plan is divided into four phases rather than presented as a list. Within Phase 3, people 16 to 69 years old who are “clinically extremely vulnerable” will be able to get the first and second vaccine doses alongside people ages 70 to 79 from April through June. “Clinically extremely vulnerable” includes people undergoing chemotherapy, people with certain types of cancer, certain rare diseases and severe respiratory conditions, people on dialysis with chronic kidney disease, people who have had their spleen removed and people with “very significant developmental disabilities that increase risk.”
The B.C. health ministry is expected to announce soon whether people with Down syndrome are included in the category.
Patient support organizations say the pandemic and uncertainty around when they'll get vaccinated are creating an additional burden for people already dealing with chronic diseases and conditions.
“The pandemic has deeply affected the women in our community, causing them fear and anxiety related to COVID,” said Valérie Dinh, Quebec regional manager for Ovarian Cancer Canada.
“We have for sure heard more and more accounts of the isolation.”
The number of users of Ovarian Cancer Canada's online forum, Ovdialogue, has “spiked incredibly” since the start of the pandemic, she said. A lot of the discussions on the forum, which enables people with ovarian cancer to offer each other support, are around COVID, Dinh said.
It was estimated that 56,800 Quebecers would be diagnosed with some type of cancer in 2020.
“I just feel like I'm slipping through the cracks,” Chaudhri said. “I would love for my son to go to school. I would love to feel just a little bit safer.”