Episode 74: EveryONE’s Voice ’Precisely’ Matters

This is a Step 5 Episode*

 

In this episode, Tiffany, CEO of AiArthritis, is joined by Catherine Ames, from the Young Patients’ Autoimmune Research & Empowerment Alliance, both persons living with AiArthritis diseases and both who attended the 16th Annual Personalized Medicine Conference in May 2022. Precision Medicine (PM) may currently be in the cancer space, but it’s quickly moving into the autoimmune/autoinflammatory space and there are some things they want you to know. What is it? Why is it important to understand and what can you do to make sure you can benefit most from it as it enters our space? 

 

They talk about its impact on prevention (yes, we said it), early detection, diagnosis, and even matching treatments based on genetic profiles and biomarkers (blood, tissues, for example). Also, PM may be a solution to capping the high cost of healthcare, which means it’s as much of a research issue as a public policy issue. 

*All main episodes that air on the 1st Sunday of each month are either Step 2 in our 6 step problem solving process (first time the topic is on the table) OR a Step 5, which is a revisit to the table. In a Step 5, we are ready to take action to solve a problem (create a resource, ask to join a project, etc.)

Show Notes: Episode 74 – “EveryONE’s Voice Precisely Matters”

 

00:52 – Tiffany welcomes listeners.

01:12 - Tiffany is a patient living with non-radiographic axial spondyloarthritis.

01:32 - Tiffany is joined by Catherine Ames, a college student living with Lupus.

04:10 - Catherine is here today to represent the Young Patients’ Autoimmune Research & Empowerment Alliance which works to include patients age 16-23 in medical research.

08:00 - Catherine and Tiffany met at a conference on Personalized (Precision) Medicine.

08:28 - AiArthritis distinguishes between Personalized Medicine and Precision Medicine because Personalized Medicine is more about patient preference and Precision Medicine is based on biomarkers.

10:01 - The conference they attended was largely dedicated to treatment of cancer more so than treatment of autoimmune disease because cancer treatment really spawned the field of Precision Medicine based on genetic sequencing of excised tumors.

13:07 - AiArthritis and AREA are at the forefront of Precision Medicine research in the autoimmune arena because most experts don’t anticipate serious breakthroughs in the immunology sphere with regard to Precision Medicine until 2025 or later.

15:05 - The keynote speaker of the conference talked about the importance of teaching the FDA and other regulatory agencies about innovative research.

17:08 - Early intervention with Precision Medicine could reduce the risk of comorbidities and increase the odds of achieving remission.

18:30 - Precision Medicine is intended to be expanded beyond cancer to other spheres within medical care, but there are access issues within the current healthcare system, especially in the United States.

19:23 - Precision Medicine has the potential to decrease healthcare costs in any system by intervening early to avoid patients developing complicated and expensive conditions.

23:20 - One example of Precision Medicine applications in AiArthritis is the use of biomarkers within RA to predict more aggressive forms of the disease.

24:10 - The reality is that AiArthritis diseases require expensive treatments that impose a significant cost burden on all healthcare systems, but only a minority of patients will respond to any specific treatment.

26:20 - The current practice of trial and error of drugs that have never even been tested in a clinical setting on a specific subgroup of autoimmune patients is wasteful and inefficient.

30:47 - AiArthritis encourages patients to get involved in clinical research by participating in the FORWARD National Databank or via other means.

31:27 - Visit AiArthritis.org/research for more information on how you can get involved in any of our research efforts.

33:33 - The concept of Precision Medicine sounds wonderful, but many patients are facing seemingly insurmountable barriers to access to care that may make them reluctant to participate in data collection efforts that might help move the field along.

38:16 - High costs of healthcare are driving access issues within all healthcare systems, so Precision Medicine should eventually - by way of reducing costs - increase access for all people.

45:18 - If patients could find treatments that better matched their specific conditions, they could improve their quality of life even if their disease is too advanced for remission to be possible.

46:00 - Tiffany and Catherine discuss pharmacogenetics.

49:43 - Pharmacogenetics has the potential to help match patients with the right pharmaceutical therapy based on their genome.

51:12 - Pharmacogenetics also has potential to anticipate drug-related toxicity before a patient develops an adverse reaction.

54:08 - Visit AiArthritis.org/research or aiarthritis.org/advocacy to get involved in promoting Precision Medicine.

55:01 - You can find Catherine @ChronicallyCatherine on social media or email her at chronicallycatherine@gmail.com. 

55:35 - Find Young Patients’ Area @yp_area on instagram or email them at youngpatientsarea@gmail.com.

56:29 - Tiffany thanks Catherine for her contributions to today’s episode.

57:03 - Tiffany invites listeners to participate in any of the ensuing 360its following this episode.

58:12 - If you have something to say about today’s episode, email us at podcast@aiarthritis.org or submit an anonymous comment at aiarthritis.org/rant.

58:56 - We are @IFAiArthritis on all social media platforms.

59:10 - Stay tuned for our brand new talk show website that will be premiering soon.

 

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