Why Take Action?
“People with arthritis are the experts on living with disease.”
One of the most important voices in discussions about health care belongs to those most affected by health policy — the person living with chronic disease (or "consumer"). As people living with chronic disease, consumers can provide critically important perspectives in discussions about health policy; yet too often, consumers' voices are not heard.
Think about it. Who has a more intimate understanding of the strengths and weaknesses existing in the health care system than a person who must navigate it daily? Who knows more about the importance of being able to access the very best, most effective medicines? Who knows more about the damage that poorly considered health policy can do to flesh and bone? Who cares more about your quality of life — your ability to work, care for your family, and participate in society? The answer to all of these questions is clear: You do.
As the people most affected by these decisions, people living with disease must look for ways to be heard and take every opportunity available to advocate for fairness and excellence in health care. You can advocate to government, state your opinions in the media and participate whenever possible in consultation processes with health care decision-makers.Your role as advocate begins with you being a proactive, educated self-advocate for the effects your disease has on your quality of your life and the health care you receive from your healthcare team. Self-advocacy can help give you some stability, a feeling of regaining control and the strategies and tools to live your best life. Self-advocacy is a way of reaching out to others and explaining your arthritis experience to your family, friends, co-workers, employers, and even strangers and learning how to ask for support and help. Ultimately, self-advocacy requires participation in the decision-making process, particularly as it relates to the healthcare you receive.
People with arthritis face discrimination on a daily basis
Discrimination against people with arthritis occurs on many different levels — from a friend refusing to believe a child can have arthritis, to one level of government refusing to pay for the treatments proven effective by a different level of government. A form of discrimination occurs In terms of arthritis research funding in Canada. Arthritis research funding has plateaued since 2005 and continues to be underfunded relative to its economic and social burden, compared to other chronic diseases.
Many people living with arthritis face particular challenges of discrimination at work. There is a stigma attached to chronic diseases like arthritis that discourages employees from disclosing their medical condition to colleagues and employers. Many employees are worried that disclosure could have negative consequences like loss of career opportunities or perhaps termination of employment. A 2017 Arthritis Consumer Experts survey showed that almost half of respondents would be reluctant to disclose to their employers that they are living with arthritis because of a fear of repercussions, and that nearly 40% knew someone that had been treated unfairly in the workplace because of a chronic illness.
Providing proper treatment and care for people with arthritis makes financial sense
We know that government is always looking for solutions that make financial sense, and we believe that creating a health care system that provides the best possible treatment and care to people living with arthritis makes sense, socially and economically.
We hope you will join with us to make sure that the people making the decisions get that message-loud and clear.