Original Published on Nov 16, 2022 at 01:01

Limited government hrlp has her ‘Dying of Poverty’

By Moira Wyton, Local Journalism Initiative Reporter

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.”

This item reprinted with permission from   The Tyee   Vancouver, British Columbia

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