Imagine contracting an illness that frequently causes prolonged and debilitating nerve pain that lasts for more than 90 days. 

Although there are limited treatment options to ease the intense pain, you learn — too late — that there’s a highly effective, safe strategy that could’ve prevented it from happening in the first place. 

This is something Bill VanGorder has heard from many of his fellow Nova Scotians, and he wants to ensure those 50 and older know there’s a highly effective vaccine available. 

VanGorder is chief policy officer for the Canadian Association of Retired Persons (CARP). That seniors advocacy organization continues to push the province to follow National Advisory Committee on Immunization (NACI) recommendations. Since 2018, that federal body has strongly recommended the shingles vaccine be funded for those  50 and older. 

In addition to CARP, the Seniors’ Advisory Council of Nova Scotia, CanAge, the province’s teachers’ union, health care professionals, and opposition parties have been advocating for a provincially funded shingles immunization program for people 50 and older.

“We all know people who have had shingles and how devastating it can be just for quality of life. It really affects older people because their immune systems are generally not as active as they are when they’re younger,” VanGorder said in an interview. 

“It’s a huge problem, but we’ve seen very, very little traction. We’ve been active and successful with a number of other files around vaccines. But shingles for some reason just hasn’t caught the attention of the policymakers yet.”

‘Really want to get it but can’t afford it’

According to the Public Health Agency of Canada, nearly one in three Canadians will develop herpes zoster (shingles), a reactivation of the virus that causes chickenpox. 

That number becomes one in every two by the age of 85. 

The incidence and severity of shingles with its rash and the accompanying pain (post-herpetic neuralgia, or PHN) increases “sharply” after 50 years. More than two-thirds of cases occur in people over the age of 50. 

“The complications can really affect a patient’s quality of life … It creates all kinds of issues. First of all, just the pain, the tenderness, the burning. The throbbing pain that people with shingles tell us they’ve had is awful,” VanGorder said.

“And the discomfort doesn’t go away. There’s no creams or other things that help … It can really be a real disturbance physically and psychologically.”

Unfortunately once you have had shingles, there’s a much higher likelihood of getting it a second time. And for those without coverage, the vaccine comes with a price tag that’s out of reach for many. 

It’s a two dose schedule, with each vaccine administered two to six months apart at a cost of about $175 each. Depending on the pharmacy, there’s sometimes a dispensing fee on top of that.

“We hear it all the time from people who say that they have to make a choice. They really want to get it, but they can’t afford to do everything,” VanGorder said.

“Cost is certainly an issue for Nova Scotia seniors these days when everything is going up in price. And it’s just another reason why the government should look strongly at getting involved, so people can get the vaccine without having to dip into their already shrinking incomes.”

Issue isn’t going away

While Ontario, P.E.I., and Quebec all publicly fund the shingles vaccine to some degree, VanGorder said P.E.I. is the province with the most “robust” public coverage, starting at age 65. He believes that if a “little province like P.E.I. can do it,” there’s no reason Nova Scotia and others can’t follow.

“P.E.I. is really the bellwether, right now,” he said. “And we’re urging the provinces right across the country to make it available to everyone over 50.”

While making it available in Nova Scotia starting at age 65 would be “better than nothing,” VanGorder said CARP would see that move as simply “a first step.” 

“This is not an issue that’s going to go away. We need a public program,” he said.

“Quality of life is our main concern. But the practical implications on the system for using vaccines, including this one, are demonstrably beneficial. It’s hard to understand why the decision makers aren’t seeing it the same way.”

A research study published in 2020 found that in Ontario (where the vaccine is publicly funded for those aged 65 to 70), there was a 19% decrease in shingles-related outpatient visits. There was also a 38% decrease in shingles-related emergency department visits and hospitalizations. 

“It’s often a little hard to understand why the federal government and the provincial government all support NACI, depending on what they say, when it’s in their favour,” VanGorder said. 

“But then with something like this, they choose to ignore the recommendations. That’s very frustrating sometimes.”

‘People are unaware’

Stellarton pharmacist Michelle Stewart is also a passionate proponent pushing for a publicly funded shingles immunization program for people 50 and older. She said the vaccine is 90% effective after the two-dose series. 

Stewart has seen and heard many stories from people who’ve dealt with the severe pain that can accompany shingles. Beyond the bothersome, painful, itchy rash, she said complications from the initial infection include chronic nerve pain that can last years.

“I had a patient who got shingles and it affected the dermatome that wrapped around her shoulder. The pain was long lasting, and nerve pain is so difficult to treat,” Stewart said in an interview.

“So she was suffering immensely. We couldn’t really find anything that would help manage it. And she lost mobility in her arm. Wasn’t able to clothe herself. It really affected the quality of life.”

Nerve pain is “tricky to treat” regardless of the cause. Stewart said because the drugs used have a lot of side effects, many people can’t tolerate them.

“So these people are left in pain. And it’s needless,” she said. “When we can prevent something, when we have the means to prevent it, why wouldn’t we.”

Stewart said having shingles can also affect the eyes, resulting in permanent vision loss. In addition, it puts people at increased risk of having a stroke or heart attack. 

“There’s so many sequelae that result from this infection that people are unaware of,” Stewart said. “The fact that we can (vaccinate and) prevent it from even occurring just makes so much sense.”

‘A really big problem’

Stewart recalled another instance where a pharmacy patient came to see her seeking help for her neighour who had shingles. Despite trying everything, they couldn’t find a way to numb the pain. 

“And in explaining this, she told me that (her neighbour) didn’t know about it (shingles vaccine). Her health care provider didn’t tell her,” Stewart said. 

“Luckily, my patient knew and was vaccinated. But there are so many people that unless it’s on an immunization schedule for the province, they just don’t understand the value.” 

As of Oct. 1, there were 144, 467 Nova Scotians (the most recently provided provincial numbers) on the Need a Family Practice Registry. That doesn’t account for those whose names aren’t on the list.

Stewart said because so many people don’t have a primary care provider, the vaccine can be easily overlooked if it isn’t on the province’s immunization schedule.

“And that’s a really big problem,” Stewart said. 

‘We could prevent this’

For many patients, the cost of the vaccine is too much of a financial burden. So despite knowing and understanding the benefits, they can’t afford to.

“It’s so disappointing. We’ve worked with people to create payment plans. Because the vaccine doses are separate, they’ll pay for the first one and then they have six months, a bit of reprieve, before they have to pay for the second dose,” Stewart explained. 

“So we’re working around it that way. But I definitely have encountered people who very much wanted to be vaccinated and went without. It’s heartbreaking.”

Recent research also indicates people are at higher risk of getting shingles following a COVID infection. With COVID on the rise, Stewart said this is all the more relevant. And while preventing the initial infection is one key goal, Stewart said a publicly funded provincial shingles vaccination program would do much more.

“It could lessen all of the sequelae that happen as a result of having the primary infection. So the chronic nerve pain, increased risk of cerebrovascular, and cardiovascular events,” Stewart said. 

“The risk is there and we know it’s there … Knowing that we could prevent this, there’s no doubt that it would have positive implications further down the road.”

Other provinces seeing the value

Stewart does have reason to be optimistic. She said she recently met with officials at the Department of Health and Wellness about another medication, and policymakers are listening. 

One example she pointed to is the province’s announcement last month that it’s now funding the high dose flu shot for Nova Scotians who are 65 and older.  

“More than ever, I feel that policymakers have open ears to preventative health care. And we need to because we’re not well-equipped to be a reactive health care system currently,” Stewart said.

“The more preventative we can be, the better off we’ll be … I’ve been told it (funding the shingles vaccine) is something that’s being looked at.”

Stewart believes the fact the vaccine is funded in a few other provinces has helped shine a light on its importance.

“Other provinces are seeing the value, and I’m sure that Nova Scotia will come to the same conclusion,” she said. 

But while people are still required to pay either out of pocket or through their employee drug plans, Stewart wants to raise awareness among those 50 and a bit older. Many are still working and have access to insurance coverage. She wants them to realize they’re eligible for the vaccine, and she wants them to understand how important it is.

“A lot of people that are age 50 still have a drug plan that will cover it, and they’re not asking. And then they retire and their drug plan is no more,” Stewart said.

“So now they’re left without the option. Hopefully we’ll have some 50-plus people reading this, and they’ll make a go of it before it’s too late.”

Yvette d’Entremont is a bilingual (English/French) journalist and editor who enjoys covering health, science, research, and education.

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