January has become a happy month at Uninvisible Pod, because it’s the month we started! You can now access two whole years of podcast eps. We’re keeping up the pace of uploading an interview a week … because when you’re in the process of healing, momentum can be energizing! Besides, there are so many fabulous people out there in the chronic illness world who have so much to share with all of us Spoonies, we just want to keep ’em comin’!
January 2021 was no exception. We spoke with two people at the Washington, DC-based Patients for Affordable Drugs — one of our favorite organizations and the only one of its kind on the Hill doing this kind of advocacy work without the funding of Big Pharma. We were really pleased to be able to have great conversations with both the Digital Director, Sam Reid, and the creator of the organization, David Mitchell. Then we met Rachel Otis, a somatic therapist who lives with Crohn’s disease and specializes in treating patients who also live with chronic illness. And Michole J, who suffers from the rare disease polymyositis, and goes by the handle @PrettyGirlsGetSick!
David Mitchell has an incurable blood cancer called multiple myeloma. He relies on drugs to keep him alive. But imagine this … the cost of his current drug regimen is more than $875,000 per year. If David lived in any other country but the US, you’d probably think that’s a typo. But Spoonies know better than anyone that such numbers are devastatingly real.
David has been working in health policy in Washington for many years. Overnight, his diagnosis put him on the other side of the desk. “I decided to start Patients for Affordable Drugs [P4AD],” he explains, “because of my experience as a patient. It was searing for me to find out just how expensive and how difficult it was for people trying to manage health care expenses, and among them, prescription drugs.” Patient organizations were raising funds for research, and offering education and support, but what David saw lacking was any effort to lower the price of prescription drugs. The reason was simple: organizations being funded at varying levels by pharmaceutical companies. Thus, P4AD was born.
“We are the only national patient organization focused exclusively on policies to lower drug prices. We’re independent, we’re bipartisan, and we don’t take money from anybody who profits from development or distribution of prescription drugs,” David explains. How are they working to accomplish this momentous goal? “We collect patient stories, and amplify those stories to policymakers and elected officials, and we train patients to be advocates.” David Mitchell gets our vote for Patient Hero.
Samantha Reid is Digital Director at Patients for Affordable Drugs. A diagnosis of Crohn’s disease eventually led her into patient advocacy, where her passion for improving patient quality of life helped her find her way to P4AD. Committed to the cause begun by David Mitchell to find solutions for affordable drugs, Sam’s health activism also focuses on racial inequities and disability justice. Testifying before Congress in 2019, she told our elected officials that “good health is not a moral virtue, and bad health is not a moral failing.”
Sam has a lot to say about being a Spoonie in the workplace. “There is this pervasive culture of … the harder you work, the better you are,” she believes. “We don’t need to kill ourselves in pursuit of our jobs. Even if that job is changing the world and doing really excellent work, you still have to take care of yourself and you have to set an example for others that it’s okay to take care of yourself. And I think that starts at the top. It’s really easy to get swept up and be, like, I’m going to stay up until 1am answering emails, and I’m going to work on the weekends. I’m going to do all these things. I think it’s incumbent upon leaders within companies and organizations to set the culture, that that’s not the expectation.”
If you’re not familiar with somatic therapy … put simply, it is therapy that acknowledges the connection between mind and body. Somatic therapists seek to release inner emotions and trauma to discover how these are impacting physical symptoms. So it was fascinating to chat with Rachel Otis, somatic therapist, who lives with Crohn’s disease — and thus has special empathy for sufferers of both the invisible … and the visible.
As a proud and vocal fat womxn, Rachel also works to fight fatphobia. Queer and in a relationship with a Black partner, they advocate for racial and gender rights. Rachel is an all-rounder with a lot to share. “I’ve built my entire life to be sustainable for my Crohn’s disease. It is something that took me many, many, many years to be okay with … not even okay with, but to be, like, ‘Oh yeah, that’s the only way it can be.’ People with chronic illness will agree. We don’t have a choice whether or not we ‘self-care’ or slow down or build these things into our life. It has to be there.” They urge their fellow Spoonies: “We just need you to be a lot more courageous than you already are, and to try and make some of those waves ripple out. Because it can’t just be you.”
Falling under the umbrella of muscular dystrophy, polymyositis is a rare muscle disease which makes walking, moving, and lifting difficult, affecting both sides of the body, and tending to gradually worsen. Women are affected more often than men, and Black people more than white. Michole J hit the proverbial jackpot with her diagnosis. But advocacy keeps her fired up … she aims to change people’s perception of chronic illness, and “that you can look okay when you’re really not.” Hence Michole’s great handle, @PrettyGirlsGetSick.
When she received her diagnosis after 10 years of symptoms … “the worst time of my life” … she made a promise to herself. “I said, when I get better, I’m going to make sure that I help someone. Because I needed to see a ‘me’ when I was going through it. There was no one. I really had no one to vent to. No one else understood. Sometimes you just feel so alone.”
Every day is different for Michole (does that sound familiar?). Some days she functions fairly well; others, she’s wheelchair-bound. This gives her a unique perspective on visibility and invisibility. We love her positive energy, and we love this suggestion in particular … “I want to change the minds of how people view disabilities in general,” she says. “Like the handicap sign … it needs to be redone. You should still have the wheelchair image. But there needs to also be a person standing.”
Imagine if that one change could be made by a Spoonie for the whole community in 2021. Imagine!