As I was driving down to North Carolina to visit my family at the beginning of the COVID-19 global pandemic, I found myself hoping and praying that COVID-19 would not have the kind of impact that was being projected. This wasn’t the first time I hoped and prayed for something that felt so out of my control. I never thought that I would actually make a difference against my own deadly disease (I am a patient with idiopathic multicentric Castleman disease, NY Times 2017) until I turned my hope into action and identified a drug that is saving my life (more here). I think the below excerpt from the introduction to Chasing My Cure is particularly fitting:
“This is a story about how I came to understand that hope cannot be a passive concept. It’s a choice and a force; hoping for something takes more than casting out a wish to the universe and waiting for it to occur. Hope should inspire action. And when it does inspire action in medicine and science, they can be harnessed to make that hope a reality, beyond your wildest dreams.”
So the following Monday morning, in March 2020, my research lab/Center (CSTL) at the University of Pennsylvania decided to throw our hat in the ring. We were primarily dedicated to studying hyperactivation of the immune system and ‘cytokine storms.’ Cytokine storms initiated by COVID19 are key contributor to its deadliness. We also investigated how existing FDA-approved drugs can be used to treat diseases that were never previously considered. This approach is called ‘drug repurposing.’ (Check out this link or this video for more details on our approach to drug repurposing). These research experiences meant we were positioned to use our prior knowledge to contribute to the fight against COVID-19, by sharing our knowledge of cytokine storms and systematically tracking repurposed drugs to see what is working and what isn’t working
COVID-19
Given the global crisis occurring due to COVID-19 and the urgent need to identify effective therapeutics, the heightened risk of COVID-19 to Castleman disease patients and other patients with immunological disorders and immunocompromise, and the CSTL’s expertise regarding drug repurposing, we began directing efforts toward fighting COVID-19 in March 2020 (while maintaining focus and efforts on our other high-priority studies)
We began by capturing data on all drugs being used off-label to treat COVID-19 patients, structuring the data on off-label drugs and reported response for future analyses, and making the data available online so that researchers and physicians can access these data quickly and easily. Later, we focused out efforts on results from randomized controlled trials (read why we focused on RCTs here) and developed an algorithm to analyze all the data from these studies. Our algorithm grades and ranks each treatment, so researchers know what repurposed drugs are showing promise and need further attention and evaluation. All our data are available to scientists and researchers for free. We called this database the CORONA Project and you can view the project here.
In parallel, we are re-analyzing and identifying trends across research studies to create a COVID-19 Immune Map about the immune response to COVID-19 that could guide therapeutic decisions.
UPDATE: Check out the below video about this effort or go to: https://youtu.be/0HFHfTd9-Y8
What you can do
Remember that the sickest and oldest are at the greatest risk. It may feel inconvenient for you, but it’s life or death for us. I hope you’ll do these five things to help stop the spread of coronavirus:
1. Get vaccinated and, if eligible, boosted.
2. Wear a mask when gathering indoors with people outside your household.
3. Limit social gatherings to well-ventilated settings, such as outdoors, when possible.
4. Get tested if you are exposed to someone with COVID-19 or if you are experiencing symptoms
6. Wash your hands
7. Cough/sneeze into your elbow
8. Don’t touch your face
9. Stay home if you feel sick
And if you’re interested in reviewing through published papers and extracting out information about drugs being used to treat COVID-19, you can also email tracey.sikora@pennmedicine.upenn.edu. Or, if you’d prefer, you can donate to enable this work at: https://cdcn.org/join-the-fight/donate/
I don’t know how or why I survived to this point, but I hope you’ll throw your hat in the ring by following the above steps and that the lessons about turning hope and fear into action in Chasing My Cure can help during this scary time.
David Fajgenbaum, MD, MBA, MSc, is a groundbreaking physician-scientist, disease hunter, speaker, and bestselling author of the acclaimed memoir, Chasing My Cure: A Doctor’s Race to Turn Hope Into Action. Best known as the ‘doctor who cured himself’ (Doctor Cure Thyself, NY Times), Fajgenbaum went from being a beast-like college Quarterback to receiving his last rites while in medical school and nearly dying four more times battling Castleman disease. To try to save his own life, he spearheaded an innovative approach to research and discovered a possible treatment that has put him into an extended remission. Now, he is spreading this approach to other diseases (His method could save millions, CNN) and sharing lessons he learned about living from nearly dying through Chasing My Cure, which has been translated into four languages and named one of the “Best Non-Fiction Books of 2019” by Next Big Ideas Club.
Hey there
Thanks for your efforts
I hope you can find a cure?
Will you experiment Rituximab or Bortezomib , will you give chemotherapy like that used in Castleman disease a try !
Or the regemins used for HHV8 MCD ?
Thanks! Great questions. We are going to follow the data wherever they take us. If one of those drugs seems promising, then it should definitely be considered. We’ll keep following the data in everything we do. https://www.med.upenn.edu/CSTL/drug-repurposing.html