International and across Canada signatories welcome and encouraged. What happens in one part of the world affects all parts of our world.
Marcia Doherty (known publicly online as Madeline) is a 45-year-long survivor of long viral Epstein-Barr Myalgic Encephalomyelitis (ME). ME is a severe, chronic illness the CDC likens in severity and impact to MS, AIDS and COPD.
Despite decades of advocacy, British Columbia’s systemic neglect of people with ME has left her without the necessary supports to avoid health deterioration. Due to lack of a host of medical/disability supports Marcia has gone approx $45,000 into medical debt, now relies on crowdfunding to survive, and is approved for Medical Assistance in Dying (MAID) for when that runs out and she faces death.
We call on the Government of British Columbia Canada to take the following actions to address systemic bias and ensure adequate, life-saving supports for Marcia and the thousands of other British Columbians with ME:
Note: These items all directly relate to roadblocks Marcia has experienced in her fight to gets supports and remain alive. *seen in this 5 page document. Plus Addition information in this Youtube video.
1. Acknowledge and address the role of disease and gender bias in the neglect of B.C. ME patients, comorbidities, and causes of ME (eg. long-viral diseases). *see attached downloads and links
2. Add an MSP(medical services plan)category of coverage for ME within healthcare. Without this category, B.C. continues to fail to provide essential support for ME as B.C. Medical Services plan symptom codes will continue to not include proper treatments/supports for this disease
CAUSE: No MSP category of coverage for ME => no stats => little to no research money => no tests/treatments => no proper physician training => no proper governmental information=> no stats… and around it goes
3. Acknowledge and reduce siloing of physicians and specialists from each other which is leading to lack of patient care, especially given that complex chronic diseases like ME have multiple crossing comorbidities.
4. Recognize and address economic bias that the current siloing of the Ministry of Health, Ministry of Social Development and Poverty Reduction (MSDPR), and Ministry of Finance is having on all disability supports.
This would reveal:
a) Diseases without proper healthcare coverage/treatments like ME/long viral/gender biased illness mean higher rates of disability. Lack of Ministry disease coverage/treatments creates more patient expenses which increases the likelihood of descending into poverty and ending up on PWD (Person with Disability) Assistance.
b) Disability deterioration means dramatically higher costs systemically.
c) The lack of supports in MSDPR result in increased expenses in the Ministry of Health due to disability deterioration, without recognition of the origins of these additional costs.
d) Siloing of the Ministry of Health, MSDPR, and Ministry of Finance is hiding these economic realities.
e) PWD having adequate supports covered is a province-wide economic stimulus in needed goods and services.
5. Increase the PWD assistance rate by $1,300.50 (from current $1,483/single person) to match what a low income earner receives per month at a 40 hour work-week, $2,784.
Achieved by
a) Recognizing the dramatic savings that the Ministry of Health will have by preventing avoidable deterioration and/or
b) Requesting the upcoming federal Canada Disability Benefit amount increase from $200 to $1,300.50.
6. Put Person with Disabilities (PWD) health supports in its own MSP healthcare category, separate from healthy low-income earners, and cover supports at what they cost. Give SDPR the ability to modify or add those supports when the need arises to adjust them to be properly useful.
Why? Even with higher PWD rates, people with disabilities (especially ME/long viral/gender biased illness who do not have proper systemic supports) have additional expenses 2 to 3 times that of a healthy person. These goods and services are to manage disabilities and disease which decreases patient suffering, deterioration induced systemic costs and increases many PWDs' abilities which can include not just self care but work/volunteering/purpose.
7. Create and properly expand powers to a new ombudsman division to discover systemic deficits that allowed a person to fall through the cracks when such a person is approved for Medical Assistance in Dying or when PWD cannot find systemic disease supports, then liaise to find supports and inform government if supports continue to be elusive so that remediations can be swiftly found. (Why? see all previous points)
Recognizing that current Human Rights Tribunal, Supreme Court, and Ombudsman legislation consider these issues to be political and so are not allowed to take on these cases leaving PWD with no avenue of redress.
Please find attached the following documents and links for your review with significant additional details:
● 31-page Clinic White Paper "Provincial Program for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Fibromyalgia (FM), and Long COVID"
● 1-page Response from DABC Disability Law Clinic
● 3-page Closing to Complainant Report from the Ombudsperson
● 37.9% of people get Long Covid after three or more infections
● I Am Madeline Podcast
● Article by the Tyee
Press release youtube video https://youtu.be/KIT1S7sTl4A?si=YbySWMTYsm4hq1QZ
... and more info on Marcia plus further resources here.
Petition GoFundMe using Marcia’s in real life name(so people won't get confused about Marcia's going fully public or that money has been used up for ongoing supports over the past 4 years): https://gofund.me/6d981312 .
You can also see via the original Gofundme updates the journey that meant there were no options left but death when money ran out or going public https://gofund.me/cff39173 and donations still gratefully accepted there as well
International and across Canada signatories welcome and encouraged. What happens in one part of the world affects all parts of our world.
Signatory information given only shared with BC gov when the petition is hand delivered
