A disabled Vancouver woman says she’s still fighting for government support to keep her life alive nearly two years after being cleared for medically assisted dying.
Madeline suffered from mononucleosis twice in her youth and has suffered from myalgic encephalomyelitis, also known as Chronic Fatigue Syndrome or ME/CFS, for more than 30 years.
Post-virus syndrome means she can’t work, has limited energy to leave the house, and can send her body into an excruciating breakdown if she overworks.
Whatever strength she has left, she’s defending herself, launching petitions and monitoring activity on the GoFundMe account that has sustained her for the past two years.
Madeleine wanted to live, but said she would opt for Medical Assistance in the End of Life (commonly known as MAID), which she qualified for in 2021 before making her condition more painful. Fearing that her condition would deteriorate to the point where she would have to receive long-term care, she preferred to die on her own terms. (Tyee uses a pseudonym to protect her privacy.)
“I want to live, not do petitions and GoFundMes and spend money on education. But I don’t know what to do,” Madeleine said.
She likened her situation to being trapped in a burning building. “The maid was just, ‘Should I jump or burn?’
Madeline found some natural remedies to help with her symptoms so she could spend time with friends and the outdoors, but these remedies were not covered by the BC Health Services plan. Her disability insurance surcharge is just $23 a year for 10 sessions—a fraction of the $200 to $300 a session she needs about three times a week. After she pays rent for social housing and buys groceries for her special dietary restrictions, her $1,358 a month in disability benefits leaves her with almost nothing to pay for those treatments.
Living on B.C.’s below-poverty-level disability assistance and already in debt meant that every treatment brought her closer to running out of money and choosing to die.
“You’re dying of poverty. If I had money, I’d be fine,” Madeleine said. “But because I don’t, I’m needlessly aggravated, and it’s going to cost me more to hold back. It never needs to be like this.”
As Ottawa expands MAID eligibility since 2021, people with disabilities and chronic illnesses and advocates have raised concerns that people with disabilities are dying supported through MAID rather than getting the support they need to live a good life.
Tyee first reported Madeline’s fight for BC to pay for her treatment in July 2021, following initial coverage on CityNews 1130 and the subsequent independent podcast series I Am Madeline.
The news story, along with a recent article by Chatelaine, raised more money for Madeline’s GoFundMe, organized by a close friend. That was enough to cover the cost of minimal therapy until mid-January, but not enough to cover the cost of other support Madeline needed, such as housekeeping and food to meet her specific dietary requirements, which tended to be expensive.
There is some hope that things will change. Since her story was reported, BC has taken what Madeline and advocates say is a small but promising next step for the estimated 77,000 people living with ME/CFS in BC.
Last summer, the legislature’s finance committee recommended creating an MSP billing code for ME/CFS testing, treatment and diagnosis, and introducing training modules for medical courses.
This will help the healthcare system track the extent and prevalence of ME/CFS in BC and signal to physicians that they should take symptomatic individuals seriously.
“Without data, the system is not going to respond,” said Hilary Robertson, co-chair of the BC Myalgic Encephalomyelitis and Fibromyalgia Society. “It’s not even on the radar of funding or anything.”
As the province considers the proposals, the community remains strongly in favor of introducing a billing code and paying more for services billed under that code.
Health Minister Adrian Dix announced last week that changes to GP pay will reflect the complexity of patients’ health needs.
There is no single diagnostic test for ME/CFS, making it difficult to confirm. This would be the case if doctors hadn’t dismissed the concerns in the first place.
Robertson noted that symptoms in many patients, mainly women, are ignored or downplayed, thereby delaying diagnosis and leading to worse future outcomes.
“There is a complete lack of equitable healthcare for patients with ME/CFS,” Robertson said.
Madeleine believes that having her disease validated by the healthcare system and recognized by doctors at a young age “could have been life-changing.”
“I could have gotten advice to conserve my energy and had the opportunity to get treatment sooner,” she said. “I may never be disabled.”
Implementing the billing code could have a knock-on effect, building awareness among physicians and increasing government funding for further research and support that will benefit future ME/CFS patients, Robertson added.
As long as COVID draws further attention to ME/CFS and other post-viral diseases, she hopes future generations will be spared the plight that Madeleine faced.
Madeline advocate Helaine Boyd, executive director of the Disability Alliance of BC, agrees that the billing code is a positive step that suggests things may improve in the future, but notes Madeline doesn’t have that time.
“Madeleine’s situation is extremely urgent and dire,” Boyd said. “She’s been in a state of uncertainty … the entire time it’s never eased.”
Over the past two years, Boyd said, there has been little response from various government ministries – including contacting the office of incoming prime minister David Eby.
Every time Madeline has spoken to The Tyee at least five times since July 2021, she’s not sure if she has enough money to live for a few more weeks.
She finds herself facing the same uncertainty as when November began.
“It’s really hard to live on GoFundMe,” she said. “People like me can’t live like this forever.”