111: P4AD’s Samantha Reid on Patient Advocacy & Life with Crohn’s Disease

Uninvisible Pod with Lauren Freedman

Samantha Reid is the Digital Director for Patients for Affordable Drugs. Growing up in Illinois, she suffered from a “bad stomach” and weakened immune system, having caught pneumonia nine times by the age of nine. But it wasn’t until she was in her late teens that she sought answers. 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. Now an active member of the Spoonie community, she’s also the creator behind the “Sicker Than Your Average” campaign, which was originally designed to help her raise money to cover her own medical bills, and has since expanded to include donations toward racial equity causes. In 2019, she had the once-in-a-lifetime opportunity to testify to Congress, where she told our elected officials that “good health is not a moral virtue, and bad health is not a moral failing.” She has also used her voice to teach us that “if your activism doesn’t include disability justice, it’s not as intersectional as you think it is.” A lover of books, feminism, friends, family, and cats, she’s the millennial we all want to be one day. Join us in welcoming this bright spark to the show!

Tune in as Samantha shares:

• that she was diagnosed with Crohn’s at age 18
• that Crohn’s disease can affect any area of the digestive tract, from the mouth to the anus
• why her relationship with the word “remission” is tricky
• the importance of boundaries in order to manage her fatigue
• a discussion about healthcare accessibility and the need for systemic change
• where improvements need to be made in the working world in terms of accommodating folks with chronic illness and disability
• her experiences of medical gaslighting
• how she gets the most out of her doctor’s visits
• what her work in lowering drug prices means to her
• why pharmaceutical price gouging is killing Americans
• that every major country in the world has made it illegal for big pharma to advertise to civilians — except for the US and New Zealand
• how her diagnosis hinders her work options because of drug pricing and access to insurance
• that funding for the research behind the development of many of the drugs that pharmaceutical companies charge us for…came from the public
• that Abbvie makes more on Humira than the profits of ALL NFL teams combined
• that she testified to Congress in favor of HR3 (which is currently stalled in the Senate, though it passed in the House)
• that we are living in an interesting time: legislators are beginning to understand that the public is holding them to their word and watching them
• the vital importance of mental health support for those living with chronic illness and disability

This is a public episode. If you’d like to discuss this with other subscribers or get access to bonus episodes, visit uninvisiblepod.substack.com/subscribe