EveryONE's Voice 'Precisely' Matters
AiArthritis Voices 360 Main, Full Episode 74
Air Date: June 5, 2022
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.)
LISTEN TO THE FULL EPISODE THEN BE SURE TO TAKE A SEAT AT THE TABLE BY JOINING THE CONVERSATION!
(Scroll down the page to learn how!)
All our main 1st Sunday of the month episodes are either an initial "put the topic on the table" episode (Step 2 in our organization's 6-step problem solving process) or a "revisit to the table" episode, where we build on a past show because we have moved forward in developing help, tools, or projects around the issue (Step 5 in our organization's 6-step process).
After each show airs we spin off the conversation into many discussions over various formats, which we now call #360its (new in 2022)!
Show Notes:
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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Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org). Be sure to check out our top-rated show on Feedspot!
360its!
Stay tuned... more 360it's coming your way!
In the meantime, ANY issues you have with accessing your therapies (pharma or non-pharma), falls under this category, because legislation and government often regulate this. Submit your issues today using our RANT page. Who knows - it may become the next 360it!
Pull up your seat at the table
Now it's YOUR TURN to join the conversation!
What do you think about this episode?
We want to know what you think! By continuing the conversation with your opinions and perspectives - we all get a better understanding of the problems facing our community. Better yet, through these conversations we can start working and developing solutions.
We mean it when say 360. Not only do we want your input anytime and anywhere, but we also are eager to see where the conversation will take us. So please, "pull up a seat at the table" and let's start talking!
Email us at podcast@aiarthritis.org, message us on social media (find us by searching for @IFAiArthritis)
Continue the conversation in our own AiArthritis Voices 360 Talk Show Group!
Pull up a seat and join the conversation on the topic from today and past episodes. You may even get an opportunity to talk directly with the co-hosts and any episode guests!
The
AiArthritis Voices Program
Our AiArthritis Voices 360 Talk Show is just a piece of larger program - the AiArthritis Voices Program.
AiArthritis Voices is our program where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives.
If you want to get more involved, and see more of the opportunities we have for you (and all stakeholders) please check out the
AiArthritis Voices Program. Unite with others around the world to talk, learn, and connect.
Your Co-Hosts & Guests: Who is at the table this episode?
Tiffany Westrich-Robertson
Tiffany is the CEO at International Foundation for AiArthritis and uses her professional expertise in mind-mapping and problem solving to help others, like her, who live with AiArthritis diseases work in unison to identify and solve unresolved community issues. For the last several years, she has continued her education in research, including becoming a professional focus group moderator, and translated this experience at our organization to develop award-winning, innovative projects that are taking patient engagement to next levels.
Tiffany has served on several advisory boards, including those to advance patient voices in policy, clinical trials, and precision medicine. In addition to reviewing grants at PCORI and for the Department of Defense, she was the sole patient grant reviewer for the National Institute of Arthritis and Musculoskeletal and Skin diseases from 2015-2018. She currently participates as a Patient Research Partner for OMERACT (Outcome Measures in Rheumatology), co-leads our organizations' international effort to advance patient voices in rheumatology research (the ACTion Council) and has dedicated her professional career to developing other patients to utilize their voices to impact the future of millions.
- Facebook: @TiffanyAiArthritis
- Twitter: @TiffWTobertson
- LinkedIn: @TiffanyWestrichRobertson
Catherine Ames
Catherine Ames is a patient advocate, writer, speaker, and a rising senior at the University of Southern California (USC). She is pursuing a major in Law, History and Culture and a minor in Theater. She lives with Lupus, POTS, Dysautonomia, Fibromyalgia, an Immune Deficiency, Migraine, Chronic fatigue, and more.
As a founding member of the Young Patient’s Autoimmune Research and Empowerment Alliance (YP AREA), a project out of PCORI (Patient-Centered Outcomes Research Institute), Catherine has been working to advance AREA’s mission for the past year. The alliance advocates for the involvement of young people with autoimmune conditions in all stages of autoimmune research. She serves on the grant-writing and strategic planning committee and the marketing committee.
She was the 2022 Youth Plenary Speaker for the Society of Adolescent Health and Medicine Conference, is a USC Vice Provost Undergraduate Fellow conducting original research on the history of disability discrimination at the university, as well as a USC Town and Gown Scholar and an honors student. Most recently, Catherine attended the 2022 Personalized Medicine Conference as a Patient Scholarship Awardee.
One of Catherine’s favorite roles is as a columnist for USC’s Daily Trojan. Her column, Chronically Catherine, offers candid insights, witty humor and personal stories of life as a young person with chronic illness and disability. She was seen on KNBC (L.A.) in a health segment about her illnesses and experience with COVID-19.
- Facebook: @itschronicallycatherine
- Instagram: @yp_area
- Email: youngpatientsarea@gmail.com
This episode was supported by Bristol Myers Squibb. We thank BMS for their continued dedication to the advancement of Precision Medicine.
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