Thank you for the opportunity to address this committee.
Long COVID needs to be acknowledged. It is a mass disabling event on a scale that has not been seen by most Canadians living today. All Canadians, public health care systems and policy-makers need to be aware of the complex issues of long COVID, how it negatively affects the health and livelihood of Canadians, and the impact it has on the workforce and the economy.
Canadian long-haulers urgently need funding for research, treatment and lost income for the many who are too disabled to work.
Long COVID, as mentioned, is a debilitating episodic illness with symptoms such as cognitive dysfunction like a brain injury, crippling fatigue and post-exertional symptom exacerbation. From toes to testicles to the temporal lobes, nothing is spared. People are unable to stand, walk or even sit up in bed due to POTS-like symptoms and dysautonomia. They are bed-bound, housebound and need mobility aids to move. Basic tasks like showering and getting dressed can cause heart rates to soar for hours.
Few qualify for financial supports. Savings are burned through quickly and people are left in desperate situations. Health care coverage is desperately needed among long-haulers, as many Canadians don't qualify for long-term disability insurance. Because of a lack of PCR testing and not having a positive result, people are denied claims. EI benefits cover only 15 weeks of illness when long COVID is a minimum of 12 weeks just to get a diagnosis.
The impact of financial hardship is extreme. Small businesses close. Jobs are lost. Relationships end. The stress of these great losses makes symptoms worse. It's a vicious cycle. Some long-haulers face eviction and homelessness. They talk of suicide.
We're fired from our jobs for underperforming or not showing up when we are sick. We want to get better. We want to contribute. We want to earn a living. We want to be healthy. We are trying, but we need your help.
Too many long-haulers are not believed. We are gaslit by doctors. We're told that it's all in our head. We're treated like pariahs. We need long COVID to be defined as a disability, so that we can access existing programs and supports. We need emergency benefits that are similar to the CERB, regardless of whether we were employed, in between work, self-employed or an unpaid caregiver at the time of sickness.
Resting and pacing is suggested, but it's not achievable for people who have to pay bills or children to look after. Recovery should not be a lottery for only those who can afford to not work and have significant outside support. While Canada has treatment clinics, there aren't enough to deal with the sheer volume of long-haulers and most of these are capped off at max capacities.
Knowledge of what does and what doesn't work is beginning to develop. It needs to be disseminated. Federal, provincial and territorial governments need to coordinate efforts. A national strategy needs to be committed to by all. Information and knowledge needs to be robust and distributed so that all health care and allied professionals know how to recognize long COVID, treat symptoms and avoid doing harm.
COVID Long-Haulers Support Group Canada has participated in countless studies nationally, internationally and provincially. We have partnered with Viral Neuro Exploration and brain health charities to survey over 2,000 people. We are patient partners. We are advisers. We are in many research projects in this country. We suggest that this be expedited. Robust funding for coordinated longitudinal research needs to be strategized, prioritized and funded. The $20 million that was given and allocated towards research for long COVID is a great start, but so much more is needed. There needs to be vast funding.
There's a burning need for research and treatment for kids with long COVID. They are under-represented and the least understood. Parents and pediatricians need to be educated to recognize and treat symptoms. Kids are missing out on their childhoods and peer relationships in school through absenteeism. They need special accommodations in school to help them succeed. These needs are urgent and need to be prioritized.
Excellent work is being done. What is lacking coordination of efforts and funding to match the scale of the problem.
Internationally, Canada lags behind its G8 neighbours in commitments to long COVID solutions, but with proportionate funding and a national strategy, we could be the global leader.
The vaccine rollout has proven it is realistic to create partnerships that will address the needs of all long-haulers. On behalf of our nearly 17,000 members and the 400,000 to 1.15 million people suffering with long COVID today, I thank the committee and beseech you to take swift action on these matters.
People do not pretend to be sick. With long COVID, long-haulers are pretending to be well.
Thank you.