By Moira Wyton, Local Journalism Initiative Reporter THE TYEE
A disabled Vancouver woman says she is still fighting for government support to stay alive nearly two years after being approved for a medically assisted death.
Madeline has lived with myalgic encephalomyelitis, also known as chronic fatigue syndrome or ME/CFS, for more than 30 years after contracting mononucleosis twice in her younger years.
The post-viral syndrome has meant she cannot work and has limited energy to leave her home, and it can send her body into intensely painful crashes if she overexerts herself.
Whatever strength she has left she spends advocating for herself, starting petitions and monitoring activity on the GoFundMe account that has sustained her financially over the last two years.
Madeline wants to live, but says she would choose Medical Assistance in Dying, commonly referred to as MAID, which she qualified for in 2021, before allowing her condition to become more painful. She fears deteriorating to the point that she must be admitted to long-term care, and would prefer to die on her own terms. (The Tyee has used a pseudonym to protect her privacy.)
“I would like to stay alive and not do the petitions and GoFundMe, and spend that money on education. But I don’t know what to do,” Madeline said.
She likened her situation to being stuck in a burning building. “MAID is just, `Do I jump or do I burn?”’
Madeline has found some naturopathic treatments that help alleviate her symptoms so she can spend time with friends and in the outdoors, but they are not covered by B.C.’s Medical Services Plan. The supplements from her disability coverage offer just $23 for 10 sessions per year — a fraction of the $200 to $300 per-session fees she needs about three times a week. Her $1,358 monthly disability payment leaves her with almost nothing to pay for these treatments after she has paid rent in social housing and purchased groceries for her special dietary restrictions.
Living on B.C.’s below-poverty levels of disability assistance and already in debt means every treatment brings her closer to running out of money and choosing the option to die.
“You’re dying of poverty. If I had money I would be OK,” said Madeline. “But because I don’t, I have unnecessarily deteriorated and it will cost more to pull me back. And it never needed to be like this.”
As Ottawa has expanded MAID eligibility since 2021, disabled and chronically ill people and advocates have raised concerns that those with disabilities are being supported to die via MAID rather than receiving the supports they need to live well.
The Tyee first reported about Madeline’s fight for B.C. to cover her treatments in July 2021, following initial reporting from CityNews 1130 and subsequent independent podcast series I Am Madeline.
That news coverage, along with a recent article from Chatelaine, brought in more funds to Madeline’s GoFundMe, which is organized by a close friend. It’s enough to cover minimal treatments until mid-January, but not the other supports Madeline needs, such as housekeeping and food for her specific dietary requirements, which tends to be expensive.
There is some hope things could change. Since her story was reported, B.C. has taken what Madeline and advocates call a small but promising next step for the estimated 77,000 people in B.C. living with ME/CFS.
Last summer, the legislature’s finance committee recommended an MSP billing code be created for ME/CFS testing, treatment and diagnosis, as well as the introduction of training modules for medical curricula.
This would help the health-care system track the scope and prevalence of ME/CFS in B.C. and signal to doctors that they should take people with symptoms seriously.
“Without the data, the system doesn’t respond,” said Hilary Robertson, co-chair of the Myalgic Encephalomyelitis & Fibromyalgia Society of BC. “It isn’t even on the radar of funding or anything at all.”
As these recommendations are being considered by the province, the society is still advocating strongly for the billing code to be introduced, with higher payments for services billed under that code.
Health Minister Adrian Dix announced last week that changes to family doctors’ compensation will reflect how complex a patient’s health needs are.
There is no one diagnostic test for ME/CFS, which makes it difficult to confirm. And that’s if concerns are not brushed aside by doctors in the first place.
Many patients — who are mostly women, Robertson noted — have their symptoms ignored or downplayed, delaying their diagnoses and leading to poorer prognoses down the road.
“There is a complete and utter lack of equitable health care for ME/CFS patients,” said Robertson.
Madeline believes having her illness validated by the health-care system and recognized by a doctor when she was young “could have been life-changing.”
“I could have had recommendations to conserve my energy and the opportunity to have treatments sooner,” she said. “I might never have become disabled.”
Implementing billing codes could have a knock-on effect of building awareness among doctors, and increasing funding from government for further research and supports that will benefit future ME/CFS patients, Robertson added.
And as long COVID draws further attention to ME/CFS and other post-viral illnesses, she hopes future generations can avoid the predicament Madeline is facing.
Madeline’s advocate, Helaine Boyd, executive director of the Disability Alliance BC, agrees the billing code is a positive step indicating things could improve in the future, but notes Madeline doesn’t have that kind of time.
“Madeline’s situation is extremely urgent and dire,” said Boyd. “She’s always been in a state of uncertainty… throughout this entire time, that has never eased up.”
Boyd says there has been little response from government across multiple ministries — including reaching out to incoming premier David Eby’s office — over the last two years.
Each time Madeline has spoken to The Tyee, at least five times since July 2021, she has been unsure whether she will have enough money to live longer than a few weeks.
She finds herself facing the same uncertainty as November begins.
“It’s really hard to stay alive with a GoFundMe,” she said. “People like me cannot have to live like this forever.”