March 15 is long covid awareness day.
Long Covid Moonshot is asking everyone to contact their representatives, sharing your long covid story, and asking for funding for research into treatments and cures for the many facets of long covid.
I sent the message below to my representatives via democracy.io . Feel free to use any of what I said in your own message, including my story if you don’t have long covid yourself.
Tomorrow is long covid awareness day. March 28 will mark 19 months since my first, and only, covid infection. It will also mark 19 months of being out of work (I’m now on long term disability), of being too fatigued to leave the house most days, of being in unrelenting pain, and of wondering when everyone else is going to catch up with the science.
I have had an incredibly privileged experience with long covid – my family members are medical professionals, including a cardiologist and a neurologist (two of the main symptom groups people with long covid are facing), I live just outside of Boston which gives me access to an abundance of medical care, and I was working a job with benefits that included generous disability insurance. Even with all those privileges, I’ve seen too many doctors who have no idea how to help me, and I’m spending more money than I’m making between the cost of healthcare and the high cost of living here.
It’s past time for the government to take a stand against long covid. There is no cure, so the first priority is prevention. Reinstating funding for free PCR tests, at home rapid tests, and paid sick leave would make a huge difference in decreasing the spread of disease. Investing in clean air (via filtration, fresh air circulation, and other new tech) for the future, and high quality masking in the meantime is the only way we can move forward. Alongside prevention, there are millions of us who are already sick (1 in 15 Americans), we need both research and care. Many people are more sick than I am and need full time caregivers, the process to get paid care is far too convoluted and needs an overhaul. My insurance is denying to cover treatment options because they’re not proven – we need more research trials funded.
Long covid moonshot is calling for $1 billion per year, for the next ten years. If we don’t act now the entire world is going to be filled with disabled people, suffering from under researched conditions – post viral illnesses aren’t new, but they’ve never been given the attention they deserve, too often because these conditions impact women more often and more seriously, a group that has been seriously underrepresented in medical research.
Thank you for your time and consideration,
Tina
Tina Cardone 