Article: I'm Fighting to Live, But...

This article was written by Madeline, and originally appeared in DABC’s Transition magazine on Dying for Health Care: Navigating an Ableist System (Fall/Winter 2022). Read the issue here.

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My name is Madeline. I’d like to tell you how and why I find myself at a place where I’ve applied for and been accepted for Medical Assistance in Dying (MAID).

The lack of financial support for the health care I need is driving me to a preventable slow, excruciatingly painful and isolated death.

I’m not using my real name because my medical team advised me that my health is so fragile that public scrutiny and pressure could kill me. The energy I’m using to write this article is costing me dearly. But, if I don’t tell my story, I don’t have a chance at survival.

My Life So Far

For four decades, I’ve lived with post viral syndrome which requires a range of essential treatments–none of which are covered under BC’s Medical Services Plan (MSP) because the disease has been virtually ignored in medical research.

Over the years, I did my own extensive research and found treatments that helped. I have been able to pay for some myself through a combination of the Persons with Disabilities (PWD) benefit, accumulating massive personal debt and donations through a GoFundMe page. But these minimal treatments were just enough to keep me alive. I continued to deteriorate.

The donations are going to run out very soon. The treatments will stop and I will die.

Let me be clear: I want to live.

Since my disease disabled me 25 years ago, I’ve appealed to MSP, the Ministry of Health, the Ministry of Social Development and Poverty Reduction, my MLA and my MP.

One of the problems I’ve faced–on top of the devastating nature of my illnesses–is the gender bias in medical research. Because most of my diseases affect women more than men, they have not been given proper attention, legitimacy and funding. The result is a lack of coverage for my life-saving treatments.

This bias has ensured my deterioration to the point where I face an early–and avoidable–death. It will be slow and brutal. I’ll be unable to move, speak or eat–trapped and isolated, in a poverty-level care home.

Given this reality, I applied for MAID and was approved in the spring of 2021.

Disability and Poverty

How can this be the only choice left to me and people with conditions like mine?

It begins with the financial and health-related supports for people receiving PWD which don’t come close to covering the costs of living with disability. BC’s PWD rates are far below Canada’s poverty line. Add to this all of the extra costs of living with disability and we inevitably fall further and further into poverty.

Then, twenty years ago, the BC government cancelled coverage for critical treatments that helped me, like physiotherapy and naturopathy. At the time, I was in a self-employment program for people with disabilities. I paid for my treatments on credit, but the debt I started to accumulate was crushing. I had to end treatment, my condition deteriorated and I couldn’t continue the program.

In my situation, denial of support for my treatments has been not only inhumane, but fiscally irresponsible. If my disease had been properly diagnosed, managed and treated 20 years ago, the government would have saved money. Now, the financial cost to turn around my deterioration will be massive–if it is even possible. And, if some treatments had been covered by MSP, I may have been well enough to work and pay for additional treatments myself.

Being Silenced

When I did my first news story, I was warned by an advocate that the government might retaliate. While I am grateful that didn’t happen, someone with experience actually thought it might.

This is why some people with disabilities who receive income assistance are afraid to use the laws that are meant to protect us. So, nothing changes–unless people with some power speak up.

When health supports were cut 20 years ago, one podiatrist kicked up a fuss for his PWD patients who lost coverage for orthotics. He was able to have coverage reinstated.

If just one committed doctor could do this, can you imagine what could change if physicians spoke up collectively? One part of my post viral syndrome, Myalgic Encephalomyelitis (ME), receives just $280,000 a year in research funding–a fraction of funding devoted to other diseases like MS and Parkinson’s.

So, I ask the politicians, the medical community and the general public, “Where have you been? Where are you now?” What is happening to me can happen to anyone, especially with the onset of long COVID affecting 10% of those who have had the virus.

There was a small flicker of hope this summer from BC’s Select Standing Committee on Finance and Government Services. The Committee put forward a recommendation for next year’s provincial budget to create billing codes for ME. This would mean that doctors could recommend treatments for ME patients that would be covered under MSP.

This would be a huge step forward for this misunderstood, under-diagnosed illness. However, even if the recommendation is accepted, the changes will come too late for me.

Last Thoughts

But none of this says who I am. Maybe a poem a family member wrote when I was little sums it up.

“My child dances like a feather, always singing all the time.
Runs outside in snowy weather, cold and snow she thinks are fine.
If we’re sometimes not together, always she’s My Valentine.”

I’ll say it one last time: I want to live.

You can learn more about Madeline and support her at: https://www.gofundme.com/f/MadelinesMiracle

Long COVID Patient Experience Project

The Long COVID Patient Experience Project was developed to connect people living with long COVID and health scientists so that they can learn together about the impact of long COVID and use this information to guide research to solve the puzzle of long COVID.

Have or had Long COVID? Want to share your story? Take the survey here: https://patientscientist.ca/long-covid-survey

The website is a partnership between the BC SUPPORT Unit, the Post-COVID Interdisciplinary Clinical Care Network, Arthritis Research Canada, University of British Columbia, Simon Fraser University and Population Data BC.

Report on Recommendations for the 2023 BC Budget

In mid-June 2022, Disability Alliance BC, in partnership with the BC Poverty Reduction Coalition and the BC Chapter of Disability Without Poverty, presented to the Select Standing Committee on Finance: Annual Budget Consultation for the BC Government. Every year, the BC Government invites members of the community to present on recommendations that should be put in next year’s BC Budget.

In particular, DABC advocated for the inclusion of the following in next year’s budget:

1. Increasing the monthly Disability Assistance rate (known as PWD)
2. Establishing a comprehensive system of coverage for Medical Equipment and Assistive Devices
3. Investing in Affordable, Accessible Housing.

DABC had 5 minutes to speak on these three issues, of which our Executive Director’s speech can be found here.

On August 11, 2022, the Committee released their Report on Budget 2023 Consultation and it can be found online here: https://www.leg.bc.ca/content/CommitteeDocuments/42nd-parliament/3rd-session/fgs/budget-consultation/Budget-2023-Consultation-Report.pdf

While all three of DABC’s recommendations were referenced in the report, the Committee ultimately did not officially make any recommendations that echoed our advocacy, with the exception of Recommendation #205: “Review the eligibility and administration of income and disability assistance, including earning exemptions policies and thresholds, with a view to reducing barriers to work, providing flexibility, and ensuring that the most vulnerable have access to all necessary supports and medical needs.”

DABC also supports the Committee’s recommendation to create “an independent disability protection office to safeguard the rights of people with disabilities in BC and advocate for those experiencing abuse, neglect, and discrimination.” (page 6 of the report).

Here are all of the recommendations in the report related to disability-focused funding:

1. Create an independent disability protection advocacy office to safeguard the rights of people with disabilities in BC.

2. Broaden the terms and conditions of Workplace Accessibility Grants so that programs and supports can be put into place for small business owners with disabilities including neurodivergent people.

3. Install reader boards for public transportation, including BC Ferries, to improve accessibility for the deaf and hardof-hearing community.

25. Increase mental health supports for students at postsecondary institutions across the province, including by providing funding to hire BIPOC counsellors, and continuing funding for mental health counselling and referral services.

44. Invest $15 million in amateur sport to improve affordability for low-income families and other underserved populations, and ensure that the sector is inclusive, diverse, equitable, and accessible.

86. Provide research-driven increased supports and infrastructure to mitigate the worst socioeconomic and health impacts of climate change (including reduced air quality, food and water insecurity, extreme heat, extreme cold, flooding, and extreme storms) on low-income groups, specifically including seniors, unhoused people, lone parent families, Indigenous communities, people with disabilities, migrant workers, newcomers, people with mental and chronic health conditions, sex workers, and people who use drugs.

118. Prioritize and fund the development of myalgic encephalomyelitis-specific billing codes for BC clinicians and the development of continuing medical education credits, modules or incentives for BC physicians, medical students, and other medical professionals to attend training about myalgic encephalomyelitis.

119. Provide the Brain Injury Alliance with a secure, annualized, and ongoing funding agreement to offer more stability and opportunities for growth to address emerging issues in the brain injury sector.

123. Ensure timely and affordable access to all multiple sclerosis treatments approved by Health Canada.

124. Provide access to arthritis-specific care, including pain management therapies.

128. Recognize that poor dental care leads to poor health outcomes by providing improved dental coverage for lower income British Columbians with specific attention focused on providing better care for people with disabilities and with diabetes.

140. Implement a funding strategy that covers the cost of modern prosthetics and orthotics, including the costs associated with emergency repairs, and ensure that BC adults with disabilities or physical impairments can access orthotic coverage after their 19th birthday.

143. Increase access to long-term counselling for children and youth who experience all types of abuse-induced trauma.

144. Develop targeted measured outcomes in mental health; and a plan to improve mental health and address addictions, the plan can include education to increase awareness, reduce barriers and stigma while also increasing access to counselling and treatment.

145. Identify and fund programming for identity-based counselling and mental health support services that are intersectional, culturally safe and LGBTQ2SAI+focused.

205. Review the eligibility and administration of income and disability assistance, including earning exemptions policies and thresholds, with a view to reducing barriers to work, providing flexibility, and ensuring that the most vulnerable have access to all necessary supports and medical needs.