Patient Travel Costs a ‘Huge Public Health Issue’

When Michael Rawluk was diagnosed with primary myelofibrosis, a type of blood cancer, in July 2018, he wasn’t worried about the cost of his treatment. He lives in Canada, where medical care is covered by our taxes.

Even his chemotherapy drugs are subsidized by British Columbia’s provincial Fair PharmaCare program.

But Rawluk and his wife, Kim Herdman, live in Williams Lake, and the treatment Rawluk needs is 550 kilometres away at Vancouver General Hospital.

While he only spent a couple of weeks in the hospital during treatment this June, Rawluk has to stay within a 30-minute drive of VGH for at least 100 days, keeping the couple in town until at least October.

This is where the “free” part of the Canadian health care system ends for Rawluk and many others who travel for medical care.

The couple is renting a laneway suite in Vancouver’s Sunset neighbourhood and spending more than $3,000 a month on food and rent. This is on top of the $2,500 they pay to cover their monthly bills back home in Williams Lake.

They’re dipping further into their savings and RRSPs to cover the costs and are concerned about the effect on their retirement.

“That’s all the money there is. You can’t take out too much,” added Herdman, who is 59. Rawluk is 67.

Rawluk and Herdman aren’t alone. They’ve met several other blood and bone cancer patients in Vancouver, some spending $7,000 a month to stay in the city for treatments.

Across Canada, patients outside major centres are making difficult financial choices to access health care, including selling their houses and liquidating all assets. Others choose to forgo treatment and risk death to avoid financial ruin.

It’s not just cancer patients. Last month, an expectant mother travelling from her home in Bella Coola, B.C., to the closest maternity ward 470 kilometres away in Williams Lake was forced to sleep in a tent for two weeks, accompanied by her toddler and sister, because they couldn’t afford a motel.

She’s one of more than a thousand moms in B.C. who travel over 100 kilometres each year to deliver their babies, said Jude Kornelsen, co-director of the Centre for Rural Health Research at the University of British Columbia.

But there is no provincial or national data on patients’ medical travel costs, Kornelsen added, because that research hasn’t been done.

“I’ve been hammering the [B.C.] Ministry of Health for the past couple of years about this issue, because it’s a huge public health issue,” she said.

The problem stems from the 2001 overhaul of medical services in B.C., when 52 health authorities were consolidated into six large regional authorities (including the First Nations Health Authority) and one provincial authority, she said. The authorities in turn consolidated many health services in the province’s larger urban centres, necessitating travel for medical needs outside of a routine check-up.

“Nobody expects there to be neurosurgery in Golden. But there is some modicum of care that’s expected,” Kornelsen said. “Given that medical travel is going to be necessary for some of the small rural communities, we have to look at how, as a society, we choose to take on responsibility to mitigate the effects of travel, because, as you’ve heard, it can be very expensive.”

There is some coverage for medical travel and accommodations in B.C.

The provincial health ministry’s Transportation Assistance Program covers the cost of airline trips or ferries for non-emergency medical travel. But it doesn’t cover gas or food if you drive your own car.

Health Connections is a separate, but complementary, travel subsidy program delivered by individual health authorities in the province. These include subsidized buses in the Northern Health Authority region; volunteer drivers working for the non-profit Wheels for Wellness program in the Island Health Authority region and Vancouver; and BC Transit bus routes for travelling within the Interior Health Authority.

“Health authority social workers will assist individuals in navigating through the healthcare system. This includes locating additional funding resources if applicable and exploring accommodation options that offer reduced rates with individuals requesting assistance,” reads an emailed statement from a health ministry spokesperson.

“While it is not feasible to cover all medical-related travel costs or all travel needs, these programs provide support to eligible patients needing to travel to access health care,”

The Canadian Cancer Society also has a travel fund for people whose annual income and assets put them below Statistics’ Canada’s low-income cut off measure, which is $13,735 after tax for a single person in a rural area.

The Freemasons in B.C. and the Yukon run a volunteer free-driving service that requires patients to book in advance for rides to and from medical appointments. The Volunteer Cancer Drivers Society does the same, but only for B.C.’s Lower Mainland.

Easter Seals House in Vancouver offers 49 self-contained suites with kitchenettes and two twin beds.

The Ronald McDonald House in Vancouver is a 73-bedroom building on the BC Children’s Hospital grounds for families of children receiving treatment there. Each bedroom has its own private bathroom, and there are communal kitchens, lounges, washers and dryers, and play areas. Meals are provided by volunteers four times a week, but otherwise guests are expected to feed themselves.

The Canadian Cancer Society has four lodges in B.C., including one in Vancouver where patients are offered two twin beds per room, but without kitchenettes. Unless you rent both beds ($52 each/night) you could be bunking with a stranger.

“What you get for that is a bedroom with two twin beds and a bathroom. If you want to watch TV, you go down to the living room, and then to eat you go to the dining room, and they supply the meals,” Herdman said of the Vancouver lodge, which they opted not to stay in.

In addition to private rentals, the couple also spent a few nights in the Easter Seal House, but again found the accommodations unsuitable for long-term stay because they lacked a full private kitchen and the rooms were not soundproof.

“That kind of system’s OK, like if you’re down for a couple weeks. But for a four, five, six months stay? That’s not something that appealed to us,” she said.

The Vancouver Canadian Cancer Society Lodge, which has 62 beds, is closed for construction for the next 18 months. However, the society has rented two floors in a nearby assisted living facility, with 40 beds available for cancer patients and their caregivers.

Some hotels also offer discounted rates for medical travellers, though per-night costs often exceed $100.

Vancouver General Hospital did experiment with patient housing at least once before, in 2011, thanks to a $360,000 donation from B.C. singer Diana Krall’s family in honor of Krall’s mother, Adella, who passed away from multiple myeloma. Matched by provincial government funding, the funds helped establish 10 furnished one-bedroom apartments near the hospital. The pilot program ran for 18 months but closed after running out of money in 2013.

In 2010 the Manitoba branch of the Canadian Cancer Society published a research paper on cancer’s financial costs to patients.

“Financial Hardship of Cancer: A Call For Action” called on provincial governments, as well as corporate and non-profit sponsors, to increase assistance to cover more travel costs and provide more accommodation options for patients.

While the financial and emotional burden of cancer hasn’t changed since 2010, said Khairun Jivani, director of Cancer Control at the B.C. Canadian Cancer Society office, “what has changed is our efforts and strategies to reduce those gaps and to improve the quality of life for people who are diagnosed with cancer.”

This includes the opening of new lodges in Prince George, B.C., and Halifax, Nova Scotia, and revising the society’s travel assistance program’s eligibility criteria to include more people. But they continue to lobby governments, corporate and non-profit sectors to provide patients more support to cover costs.

“We know from our stats that the burden of cancer is not going to reduce, it’s just on its trajectory up, our aging population is adding to the burden,” said Jivani. “I don’t think it’s one solution. It’s the collaborative joint effort that is needed to bridge it.”

Kornelsen and her team have begun surveying residents of rural B.C. communities on the extent of their medical travels and personal financial costs. But until the work is done in six months, we only have anecdotes on the total cost to British Columbians, said Kornelsen.

“We have very good cost-effectiveness studies on what it costs the health care system to provide care to rural communities or folks from small centres, but we don’t have a good, rigorous accounting of the out-of-pocket costs,” she said.

Cost-effectiveness analysis shouldn’t just consider costs to the health region, but also the costs of patients, she said.

Herdman and Rawluk have already moved twice since coming to Vancouver on June 1: once from the Easter Seals House to a rental suite, and then again to their current laneway unit when the first rental turned out to be not as advertised.

While they’re happy with their new location, rental tenancy laws dictate the couple must give a month’s notice before leaving, which is tricky since they don’t know when Rawluk will get doctors’ approval to go home.

Herdman fears that in the absence of more suitable patient accommodations, the demand from people receiving medical treatment will drive up rents for everyone.

“I think we’re keeping the rents high,” Herdman said. “Because if you don’t want to pay $2,500, there’s someone else who will.”