AiArthritis Voices 360 Talk Show

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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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.

JOIN TODAY!

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! 

Episode 73: ”Arthritis” Awareness - It’s Complicated!

In this revisit to the table (Step 5 in our problem-solving process), Tiffany, Katie, Effie, Eileen, and Kerry discuss the many layers around the word “arthritis” including: 1) Misunderstandings around the word that can lead to delays in diagnosis, family and friend judgements, and the different type associated with “AUTO” diseases; and 2) Complexities that exist when trying to identify the AiArthritis from other potential comorbidities (Osteoarthritis, bursitis, enthesitis) and how clarity about this could help with detection, access to the right treatments, and overall better health outcomes. 

 

This conversation takes many turns, all which address issues identified from lived patient experience. Why is differentiating arthritis types important? How many of us referenced family history to expedite diagnosis? How does public, family, and even doctor misunderstanding of our diseases play into diagnosis and exploring potential comorbidities? How accurate is the literature in regards to arthritis prevalence in comparison to what patients report to be true? They even started brainstorming the development of a new tool that could help the public, patients, and health providers better understand the layers of our diseases as well improve communication and overall disease journeys. 

 

Now it’s YOUR turn to weigh in!  There’s a lot to talk about, join us ‘at the table’ so, together, we can change the stories of tomorrow! Submit your comments here, at podcast@aiarthritis.org, on our social platforms at Facebook, Instagram, Twitter, or LinkedIn @IFAiArthritis. 

 

Show Notes:

• • 00:53 Tiffany (CEO, non-radiographic axial spondylitis) introduces the show and co-hosts, Katie (Programs & Communications Manager, rheumatoid arthritis), Eileen (“Chronic Eileen” rheumatoid arthritis), Effie (“Rising Above RA”, rheumatoid arthritis), and Kerry (“Float Like a Buttahfly”, sarcoidosis). 
  • 3:13 Tiffany officially welcomes Elieen and Kerry as the newest recurring Co-Hosts!
  • 3:37 Explains a new addition to the show - the “360its!”, where any topic or comment from the episode is eligible to spin off into different conversations in any communication format (facebook live, twitter, 
  • 4:37 Topic is around the word arthritis, as a Step 5 (revisit to the table) issue, because in the US it’s Arthritis Awareness Month and May 20th is World AUTOimmune & AUTOinflammatory Arthritis Day
  • 6:35 Co-hosts start the conversation by answering the question, “Why do YOU think the type of arthritis associated with our diseases - and differentiating it from other types - is so important?” All co-hosts share their stories and perspectives.
  • 11:17  In the stories shared, the co-hosts outline a journey from “What’s wrong with me?” to “Misunderstandings” to “public education” and “doctor education” and “overlap of types of arthritis (also Osteoarthritis) or other comorbidities.” If we (patients, public, families, doctors) better understood arthritis and the types we could improve detection, referrals, diagnosis and, in turn, improve quality of life, increase rates of remission, and lessen unnecessary disability. This can lead to better overall healthcare and improved costs for healthcare systems. 
  • 12:52 Tiffany opens the conversation to discuss anyone’s experience with relatives having our diseases. Did anyone say, “Did you have a history of autoimmune/autoinflammatory disease in your family and, if so, did anyone say to you when figuring out what was going on with you, ‘Hey, this person has XYZ, maybe you have something in that family?” They continue discussing this and determine in their cases the connection between family history and detection/diagnosis was not common. This is an opportunity to discuss further because family history and communication about it could expedite diagnosis.
  • 17:18 Kerry puts this perspective on the table - Not all families talk about things like illness, so in those cases knowing family history is hard. But given we know AiArthritis diseases are part genetic, this could be a key factor that could either lead to quicker diagnosis, or prolong diagnosis. 
    • 18:16 Kerry - Talking about the statement “It’s all in your head” - “Once I had something visible - rash on my legs, swelling - I could say ‘I’m not making this up!” Bloodwork was fairly normal except a positive test for autoimmune thyroid, which led to a sign of diagnosis. But it took the visible plus some type of autoimmune direction in bloodwork to get there.
  • Most agree, they only realized other family members had something similar after diagnosis. Could this be in part also because it’s not understood by families that ANY of out 100+ “AUTO” diseases counts as family history?
  • Tiffany explains the importance also of knowing family history, as newer research is moving towards prevention - or at least catching the disease very early - based on certain biomarkers + known environmental triggers + family history. 
  • 21: 12 Conversation continues about family history when it comes to the doctor visit (not asked). Often this leads back to the patient trying to push testing and googling what they have. 
  • 22:37 Group starts discussing delay in diagnosis journeys, including overlap of symptoms and the arthritic component, and how important the right diagnosis matters.
    • A lot of delay in diagnosis for Kerry came from the doctors not understanding so self advocacy became necessary to help them figure it out.
    • When you have a rare disease, less knowledge is often present and, therefore, more self advocacy necessary.
  • 28:48 Effie revisits the topic of family history and how culture and heritage can impact conversation (“We don’t talk about family illness.”). Or, in her case, as immigrants, a lot wasn’t documented. This has, in part, encouraged her to start sharing her story to help others have those ah-ha moments.
  • 31:11 There are different kinds of arthritis and some of us have more than one, which can lead to confusion in diagnosis (“You’re too young to have arthritis”, “You’re too old to have RA”) and family misunderstandings (“oh I have that too, it’s not that bad”). They discuss why it’s important for patients to know which type they have - or if they have more than one type. Also, how do we differentiate the systemic systems (part of our disease or comorbidity?)
    • How does it overlap or is it separate? Is there a way to treat one differently than another and, if so, what should I know?  How do I identify where my pain is coming from and what am I doing to trigger this pain - did my meds stop working or is this something new? Also, since our diseases are systemic and affect organs, too - that plays into this as well.

• 39:05 This is a Step 5 episode, which means we have discussed these topics enough over the last year, including in this episode, to be at a point where we can head into Step 6 - which is creating a solution. In this case, a resource to help with identifying AUTO + Arthritis (and potential comorbidities) so we can improve detection, diagnosis, and disease management.  Things to consider in developing this tool:

• • • Name your pain. What kind of pain do I have? (joint, enthesitis, non-joint, fibro pain, bursitis pain?) Where is it located? (Symptom chart)
    • What disease do I have? How can this resource be used to share with doctor?
    • Make it patient-led, then doctors review.
    • Potential comorbidities
    • Include building vocabulary and considerate of families/juveniles
  • 42:50 Group discusses why this tool is also important - often doctors will not connect the dots on their own. Kerry gives an example of a doctor considering pituitary gland involvement because, “That could cover many varied issues.” It’s THAT line of thinking, “What could cover many varied issues?” that doctors need to consider.
  • 44:04 “Those with sarcoidosis are thought to have lung involvement so if that’s missing as a first symptom it may be missed.”
    • The prevalence of arthritis, and what doctors believe is the correct percentage, may differ from patient-reported prevalence. They give examples of Sarcoidosis. It's thought that only 30% have arthritis, but Kerry hasn’t met one person without it. Recently in Still’s Disease (which includes systemic JIA), research has shown about 25% of patients do not have arthritis - especially as a first symptom. Yet the diagnosis triangle for Still’s taught to doctors is look for arthritis, rash, high fevers.
    • Is arthritis part of the disease or a comorbidity?

• 49:45 Katie mentions pain evolves in perception and simply getting used to it over time (pain is normal). How does this play into pain reporting? How does measuring pain and personal tolerance and mindset play into this?

• 55:25 What if the arthritis isn’t so bad and it’s the AUTO features that dominate. How can we communicate this? The group also discusses the importance of not eliminating arthritis as a clinical component altogether if it is or was part of your disease. (It’s important for our tool. Is it earlier in their disease, later, a later comorbidity/OA developing?)
• 59:05 Tiffany wraps up the show, starting by inviting the audience to weigh in on the tool we started to brainstorm about in this episode. You can submit your ideas at podcast@aiarthritis.org, via messenger on social media @IFAiArthritis, social media posts about it.
• 1:01 Kerry, “Float Like a Buttahfly” can be found on Twitter and Instagram @ButtahflyK and on Facebook Float Like a Buttahfly; Effie Instagram and Twitter @RisingAboveRA and on YouTube RA and Myself, blog: RisingAboveRA.com; Eileen, “Chronic Eileen” can google this name and also writes for CreakyJoints, Healthline, and Arthritis Research Canada. 
• 1:02:40 You can find AiArthritis at @IFAiArthritis on social media or on the web at aiarthritis.org/talkshow. While there please Tip the Team by giving a donation so we can continue providing this amazing resource!

___________________________________________________________________

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.

JOIN TODAY!

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! 

 

Episode 72 The Myth of Average: Time for Change

Join Tiffany and Deb, both persons living with AiArthritis diseases, then Tiffany and John O'Brien, CEO of the National Pharmaceuticals Council, as they put the topic of importance of innovation & treatment access in research and public policy 'on the table'. Learn how YOU can join efforts to impact change!

Who is 'at the table'?

• Tiffany Westrich-Robertson, CEO AiArthritis, person living with non-radiographic axial spondyloarthritis
• Deb Constien, AiArthritis Volunteer, person living with rheumatoid arthritis
• John O'Brien, President & CEO of the National Pharmaceutical Council (NPC)

 

In this two segment episode, first join AiArthritis team - Tiffany and Deb - as they put a new show topic "on the table" for the first time: the importance of innovation in research and patient access to the treatments that are best for their individual characteristics. In this episode we introduce questions, like "Why does a treatment work for you and not me?" and "What if we don't tick all the boxes (are 'atypical', including having comorbidities) - how can I still access the best treatment for my unique needs?" The bottom line is that AiArthritis diseases are unique to the individual, and as a result, we may be better off using treatments that are not the same ones our health systems tell us we need to use. For change to happen, we need to hear stories from many patients (not just a few), but there are several barriers to achieving this. However, AiArthritis is working on a solution that involves creative, patient-led public policy classes focusing on four topics - two which are discussed today (innovation in research and value assessments). Listen to Deb and Tiffany explain more!

In the second segment, Tiffany welcomes John to the table, as his organization - the National Pharmaceutical Council (NPC) - published a few of the reports AiArthritis is referencing in our courses. Together they explore how new research can lead to improved patient care and potential access to the right treatment for individualized need and based on patient-doctor decided management. Finally, they start the conversation about value assessments (a complex and difficult process of assigning value and cost to medications), highlighting both an understood need for healthcare systems to provide fair access to all, while considering patient uniqueness and the future of personalized and precision medicine. 

 

Show Notes:

Part One: Tiffany and Deb talk about the importance of innovative research and getting more patient voices involved in public policy (both which influence access to therapeutic care).

:53: Tiffany introduces show, herself (nr Axial Spondyloarthritis), and co-host Deb introduces herself (Rheumatoid Arthritis and several comorbidities)

• 2:25: Tiffany explains the topic of the show today, which involves patients who are not typical, including those with many diagnoses or who do not “check the boxes”.
• 3:35: Today we will focus on the importance of being “average” and “not-so-average”. The time being now for all of us to come forward and speak out in regards to our access to therapies and disease management - through public policy and research efforts. This is especially important for those who don’t tick the boxes, or a model, textbook perfect patient.
• 4:25: Tiffany mentions the second half of the show will feature a guest, John O’Brien, President & CEO of the National Pharmaceutical Council (NPC) who will be discussing their paper, “The Myth of Average”, and the importance of innovation in research and understanding value assessments (or the processes around health systems procedures that help determine which medications we are able to access).
• This is a problem when we don’t all fit a ‘general patient population’ when we are thinking about policies that are centered around access for the average - and in a time when we are moving towards a world of precision medicine (treating the individual).
• How can patients come to the table and make a difference so we don’t lose access to options?
• 5:25: Tiffany and Deb discuss their patient journeys and, specifically, how they would not be considered ‘typical’, or classified in the group of general patient population. “We are all unique.”
• Tiffany further explains how her current diagnosis did not exist a decade ago, so thankfully for research her disease now has a name and treatments that work well for her.
• 8:45: Deb and Tiffany discuss how different therapies work for different people, which is important to understand. “What works for you may not work for me.”
• 9:27: Tiffany asks listeners to think about the evolution of our patient journeys and, as a result, the importance of patients/supporters to stay connected with their legislators (people partially responsible for access to healthcare) over time so they can see that our diseases are not static. They often evolve and, in turn, our treatment needs can change.
• 11:40: Tiffany and Deb discuss the analogy of using cough medicine. Why is “your” cough medicine better? We need to realize drugs in the same classes work differently because they have various differences that, in turn, react differently in each person’s body. “This is why AiArthritis is highly invested in precision medicine, or matching the right person to the right treatment at the right time.”
• We are also invested in personalized medicine, or personal preferences, which also factor in.
• 13:18: Tiffany states the organization's mission to help others, like them, have a voice - alongside other stakeholders as equals - so, together, we can solve problems that impact education, advocacy (public policy), and research. 
• 13:45: Tiffany explains the role of ethics in healthcare access, referencing a paper she authored in 2015, the Ethics of Step Therapy, in collaboration with two bioethicists and “bestie” Kathleen Arntsen from Lupus and Allied Diseases, Inc., where AiArthritis learned all about the different roles of ethics for both health providers and doctors. She specifically explains the ethical Principle of Justice, which involves the responsibility to ration healthcare for all. “If we are going to see change, we need to meet in the middle, respectful of the agencies who need to consider access for all."
• 15:50: They discuss show design, in that this is the first time this topic was put ‘on the table’. In 2022, we are starting “360its”, or spin off episodes and segments that will be in a variety of methods and platforms so all people can contribute to this conversation (globally). Then, together, we can all be part of the solution in regards to healthcare access and desire for innovation to continue.
• Keep in mind, perspectives may vary depending on where you live. For example, in socialist societies, value assessments - which tend to favor general patient populations - may be more accepted.
• 17:05: They discuss research and ‘atypical’ factors into this. Cost savings is often based on citing credible research, which is mostly conducted in general patient populations (or whomever signs up to participate!)
• 17:50: Patient stories are vital to helping legislators humanize health access issues, but it’s always a challenge finding stories - or the stories are from the same people. So AiArthritis spent 2021 figuring out why and, as a result, identified several barriers to participation, including lack of clarity and confidence.
• As a result, AiArthritis is launching a patient-led creative classroom program in 2022 that will cover four topics, including innovation and value assessments. Goals: 1) Increase number of patients/supporter voices in public policy and story sharing (including demographic contribution), 2) Recruit our own organization ambassadors, 3) Build confidence, 4) Identify the issue in relationship to self and others (patient to patient invitation to learn how to have a voice). 
• 30:10: They discuss how this conversation will 360it and how to get involved in this new program: https://www.aiarthritis.org/advocacy 
• 30:55: Part of the program will involve a program library of resources, including featuring The Myth of Average publication by the National Pharmaceutical Council (NPC)- which is why we are talking to John from the NPC next.
• 30:23: Tiffany thanks Deb

 

Part Two: Tiffany and John discuss innovation in research and value assessments (measurements used, in some cases, to determine patient access to certain treatments)

 

• 31:39: Tiffany welcomes John to the show, who introduces himself and the NPC
• 32:58: Tiffany explains John is ‘at the table’ because AiArthritis, who has developed a new patient-led public policy education program, is referencing several of the NPC’s publications for the class library (including the Myth of Average). The piece is in keeping with AiArthritis’ core priorities to help foster precision medicine and assess the right treatments for the individual.
• 35:42 John explains that innovation means the never ending search for cures and new treatments and why this resonates with him.
• Why does one treatment work for one person and not the other?
• Uses the example of Tiffany’s journey, as she was diagnosed in 2009 before her disease had a name (nr-axial spondyloarthritis). So researchers were finding solutions for people like Tiffany, the Mystery Patient, and that’s innovation.
• “This is all why it is essential that patients and researchers stay connected during the development process.”
• 39:00: Patients who are atypical, but who are lumped into the general patient population model, may risk being on the wrong treatment and that can have negative consequences. “Putting me on the right treatment that was indicated for my disease made a world of difference. It was like night and day.”
• 40:07: Tiffany tells us a story about her quality of life challenges prior to access to the right treatment, which involved the inability to get out of bed in the morning. 
• 40:53: Also, people like Deb - who have exhausted all treatments - what do these patients do?  Patients like us need to understanding the importance of research and the public policies that can influence our access to the treatments best for our individual needs. Join AiArthritis’ efforts at https://www.aiarthritis.org/advocacy 
• 42:15: John talks about the importance of the patient-doctor decision for treatments, which can be sidetracked if the healthcare system does not cover that therapy. 
• Researchers ask, “Why do different individuals have different responses to the same treatments?” 
• Furthermore, if the treatment was designed for the general patient population, how will this impact a patient’s access to their doctor recommended therapy?
• The Myth of Average report highlights that age, genetics, ethnicity, behaviors, biology, and other individualized factors are not always considered when rationing treatments on a population level. “Patients should have access to the treatment that their doctor believes is clinically relevant for them.”
• 48:00: Tiffany talks in detail about AiArthritis’ Ethic of Step Therapy investigation (2015) - which has relevant takeaways regardless of health system (location): patient-centeredness, fairness, clinical relevance. 
• They revisit the Principle of Justice (from Part One with Deb)
• The ah-ha moment that led to the conclusion of the paper was a result of Tiffany’s inability to be included in clinical trials because she was an atypical patient. She realized that clinical trials include patients who meet a general patient population criteria - the same research that insurance companies cite to justify their cost savings. However, in cases like Tiffany - where the patient is atypical - then the decision should default to the doctor, who is ethically obligated to treat to the individual characteristics of the patient. “Drop mic.”
• 50:44: This ethics paper led to the research work - and public policy work - we do at AiArthritis, in part, because a lot of money goes into this research using the general patient population, yet only 40-60% will respond once that drug goes to market (because the rest of us are atypical). “We need more treatments” for the rest of us.
• Shout out to Autoimmune Association and the Let My Doctor’s Decide Initiative, which AiArthritis serves as an advisor. 
• 52:02: John tells a story about how patients/supporters often understand the mechanisms of their disease and the different treatments researchers as well as the company themselves. “So not just at this table, but we have so much to learn from each other - especially when it comes to what the condition is like in the real world.”
• 53:25: John talks about health technology assessments (value assessments), what they are - including some access barriers they may cause (due to lack of transparency, caregiver burden, and drug measurement vs personalized experiences).
• Provides an example of employer based insurance (USA) if an employee is unable to work due to inability to access the best treatment for them.
• 55:42: John defines health technology assessments (HTAs), including the history of them and further discusses Quality Adjusted Life Years (QALYs) - which in his opinion can be discriminatory for people living with disabilities. 
• 1:00:08: There is a need to cut costs and have a well distributed system of rationing spending. Even on some HTA websites in their own explanation of how these work they state the process is not designed for the individual but rather for the population. However, in a world that’s moving towards precision medicine, and considering the patients who have exhausted all treatments, how do we ensure value assessments can be fair and considerate of the new science?
• They further discuss the QALY.
• No one is telling employers who are choosing health plans (USA) that if their employee isn’t able to work because they don’t have access to the right treatment that it could end up costing them more in time off, hospitalizations, and overall less work production.
• “This is the risk of using QALY’s when trying to establish population based coverage decisions.”
• Tiffany confirms that it’s difficult to work if you have brain fog, pain, or fatigue.
• 1:03:35: Tiffany reminds the audience that now in 2022 we are spinning off from each episode - any bullet point, any topic segment - and continuing the conversation in a variety of ways so we can include all of you in the conversation. Called #360its. Patients, supporters, legislators, researchers, pharma, etc - we need you all at the table!
• “The people who I always learned the most from are the patients.” Patients need to share their experiences. 
• 1:06:00: Tiffany mentions a good 360it would be to discuss the continued need to use shared decision making in healthcare (patient-doctor decisions), because that is also relevant in regards to accessing the treatment that may be innovative and new (if that is the right treatment for us). Personalized and precision medicine consideration.
• 1:07:20: The research the NPC does is to help patients gain access to medications and foster innovation. “What If Groundbreaking Medicines Never Existed?” paper, which outlines where we would be today without drug innovation. Tiffany suggests that people read this, then let’s do a 360it to discuss.
• 1:09:15: Tiffany reiterates the reason John is here is because the work the NPC does is in line with our AiArthritis work to fight for precision medicine (access to the right treatments at the right time for the individual person's needs). As such, we are including a few of their reports in our resource library in our new patient-led public policy education program. Learn more and sign up at https://www.aiarthritis.org/advocacy. 
• 1:10:10: Tiffany thanks John for pulling up a seat at the table.
• 1:10:31: Tiffany closes out the show. If you like the show and listen on your favorite podcast station, please subscribe and give us a rating. 
• Find all the episodes at our website at www.aiarthritis.org/talkshow 
• Also, if you want to help us continue offering this program, please consider a donation, because your support makes this show possible!
• Find us on all social media channels at @IFAiArthritis where you can message us to have a seat at the table or email us at podcast@aiarthritis.org.

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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.

JOIN TODAY!

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! 

 

 

Episode 71: Supporting Me, Supporting You, Supporting Us - Revisit to the Table

A revisit to the table with Deb Constien, Estela Mata, and Tiffany Westrich-Robertson as they continue discussing the dynamics of support - including needs of the patient as well as others in the patient's support circle. Building on Episode 43 and Episode 48, they start a support tracking tool to help patients and families/friends better assess their needs and how, together, we can work to address them!  You're invited to help us continue developing this aid - find out 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). Learn more about our process and mission. 

 

Show Notes:

0:55 - Welcome & introduction by Tiffany Westrich-Robertson

1:28 - Introductions to Deb and Estela

1:45 - Estela is a Founder of Looms 4 Lupus, an organization that focuses on the supporter network for lupus patients and others with chronic illness.

2:34 - Deb is a recurring co-host and long term dedicated AiArthritis volunteer.

3:35 - Tiffany explains the mission of the show to put a topic 'on the table' OR revisit the topic, which is what this episode is about.  It is based mostly on Episode 43 It's a Family Affair (https://www.aiarthritis.org/talkshow-ep43). This is a step “5” in our six step process (learn more about the stepshttps://www.aiarthritis.org/about-us).

4:54 - The support person can be a family member or a friend, who will have diverse support needs depending on their personalities and coping skills (among other things).

6:11 - Tiffany explains the addition of the #360it to the episodes. Expanding the show to as many formats as we can to keep the conversation going, so that all people can truly have a seat at the table.

8:35 - Estela discusses the impact of Juana's diagnosis, including the different reaction of the family members.

11:08 - They talk about the importance to figure out roles and how to give support from each perspective and personality. This includes "Supporting the support" - helping the spouse and the children figure out what support they need. Also, what can we all do to address support needs for different people?

12:25 - Deb shares a similar story about her family members response to her diagnosis. (her mothers guilt, and the “cheerleader” role of family members).

13:40 - Communication plays a big role because needs can vary so much and change over time.

14:04 - Sometimes people need to go outside of their family circle to get the support that they need. Friends can be your primary supporters.

15:40 - Deb shares a story about an early experience with her husband, who left her after surgery with a toddler and other complications. While she 'gave hints' he should come home, she learned he needed more information regarding how she needed to be supported.

 

19:20 - Tiffany talks about the evolution of roles and communication dynamics with your support systems over time. She introduces the start of a guide to help identify your support network and the roles they play in the journey. Step One: Who is in your Support Network?

21:28 - Deb’s provides examples of her support system, which includes her extended family members, friends, and church family.  This leads to Step Two: Assign Roles.

23:04 - Estela and Tiffany expand into Step Three: What are the needs of each person? Once you identify your supporters then determine who you think you need to go to for each need. Be sure to communicate with each person so they are clear about your expectations.

30:23 - Tiffany mentions considering Step Four: Evolution of Needs, which includes disease journey shifts and new people entering your Support Network.

33:26 - Remember, it's a learning curve for everyone. There will be trial and error but just be patient with each other. People take their own meaning from things, so miscommunications happen. Have a discussion (even repeat back to confirm) to make sure everyone is on the same page. You have to reassess every time to prevent resentment and misunderstandings. Not everyone can fill every support role- and that's okay. 

38:32 - Deb addresses disease misunderstandings as a main cause of patient needs for support. She suggests developing a QR code for people to immediately have access to information on our conditions.

40:46 - They discuss additional things to consider, such as learning more about the disease, symptoms, treatments, as well as considering various means of providing support.

47:30 - Tiffany invites listeners to contribute to building this tool and using it.

 

VIEW OUR OUTLINE HOW TO START YOUR SUPPORT AID HERE

 

 

48:00 - Tiffany explains how we are going to "#360it" this episode.

49:08 - Estela's sister, Juana, will host one of the #360it spin offs, focusing on the supporter switch (when the patient turns into a caregiver, for example, motherhood.)

50:16 - #360it spin off episodes can go anywhere -  Twitter chat, tiktok, Facebook posts, mini episodes - and can be done by ANYONE! If you want to add to this conversation by sharing your recommendations or stories let us know. You can also just tag us on social @IFAiArthritis and use the hashtag #360it. 

52:00 - You can find Estela and Looms for Lupus on Instagram, Twitter, and Facebook @looms4lupus, and Estela on Instagram, Twitter, and Facebook @estelamata. Don’t let the name fool you, they focus on all autoimmune conditions, overlapping mental health conditions and are here to support you. What all these conditions have in common is the need for all of us to support one another!

 

Find all our projects at www.aiarthritis.org/initiatives and make sure to sign up FOR FREE (all stakeholders) to our AiArthritis Voices program to learn about all our opportunities to be at the table! www.aiarthritis.org/aiarthritisvoices.

 

Also please consider a donation to the show by Tipping the Team! We can only continue providing resources like this show with the support of our community. DONATE TODAY!

 

________________________________________________________________

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.

JOIN TODAY!

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! 

 

 

Episode 70: The Future of Shared-Decision Making & E-Health in Rheumatology Starts with YOU! Revisit to the Table

In this episode, AiArthritis CEO and person living with Axial Spondyloarthritis - Tiffany Westrich-Robertson - and Dr. Lisa Zickuhr - rheumatologist from Washington University - continue the conversation around shared-decision making and its importance around patient-rheumatologist communication. They focus on a research project both are involved in, and that YOU can join! The project aims to explore patient-reported and rheumatologist-reported barriers to virtual care and, in turn, work towards developing shared-decision making guidance for rheumatologist to adopt in e-health situations. 

They also took the opportunity to break out into a segment on COVID-19 and shared-decision making, This segment will be separated from the main show soon, available as it's own minisode, as a "360" spin off from our RheumyRounds and COVID-19 & AiArthritis episodes. 

 

SHOW NOTES

00:54 - Tiffany welcomes listeners.

01:04 - Tiffany is the CEO of AiArthritis, one of the many patient co-hosts from around the world, and a patient living with non-radiographic axial spondyloarthritis.

1:30 - Tiffany is joined today by Dr. Lisa Zickhur, rheumatologist from Washington University Rheumatology and the school of medicine. Lisa also has an interest in education and helps train fellows, or “doctors in progress.”

2:41 - Currently Lisa is working with Tiffany and AiArthritis on a shared decision making project - especially in the virtual environment, which is the topic revisited today.

4:50 - Tiffany revisits the methodology of the show, explaining there are 6 steps to all the work done at AiArthritis and the talk show episodes fall into Step 2 or Step 5. Community input happens in Step 3, which we also circle back to after Step 5. Step 6 is when we create resources based on all the input.

5:31 - This is a Step 5 episode

5:50 - Lisa explains her experience in shared decision making and teaching rheumatology fellows.

6:46 - Tiffany revisits the first episode where we “put the topic of e-health on the table” after she and fellow patient Co-Host, Deb, attended EULAR 2018. 

7:45 - Shout out to Dr. Auralie Najm, who was speaking at EULAR 2018 about e-health, where there was a debate that e-health was still at least a decade away from implementation.

9:01 - E-health is thrust upon us in 2020,  around the time shared-decision making builds in popularity.

9:44 - Shout out to Dr. Al Kim, or Dr. Al, or “just Al”, also from Washington University, who also discussed patient-doctor communication in the original RheumyRounds series, which included addressing “Dr. Google”.  But with COVID onset, patients stopped coming to office visits with knowledge and instead turned to their doctors for complete guidance.

10;31 - Lisa speaks from the doctor's perspective regarding early COVID challenges.

11:07 - Tiffany and Lisa talk continue discussing how shared decision making has evolved and now “it’s everywhere.” And it’s why it’s so important right now.

12:25 - Doctors aren’t all still great at shared decision making and it’s good practice for patients to learn how it works and how to engage in it.

13:02 - AiArthritis already has several projects, including this new one with Lisa and Washington University, underway. Learn more at www.aiarthritis.org/initiatives or sign up (FREE) for AiArthritis Voices to stay informed of all opportunities we have: www.aiarthritis.org/aiarthritisvoices. 

13:46 - They are also creating tools to help teach patients, fa

14:09 - Lisa talks about another project just completed around e-health, which was to take general telehealth competency guidance and revise it to be more meaningful in rheumatology virtual visits (and for use by rheumatology fellows in training). Some were specific to shared decision making. Tiffany was the one patient representative on the panel of twelve.

17:30 - Lisa tells the audience about the new project Washington University is working on with Tiffany from AiArthritis, along with Catherine McCarthy from the Veterans Hospital and Emma Nolan-Thomas who is a medical anthropology student (and person living with Sjogren’s Syndrome), which aims to identify the best shared decision making practices in virtual rheumatology encounters.You can get involved by signing up at www.aiarthritis.org/initiatives. 

19:29 - Tiffany further explains a methodology originally developed by AiArthritis, where patients - trained as professional focus group moderators help facilitate the research. This is incorporated into the Washington University project, with Tiffany as one of the moderators.  

21:39 - Special shout out to Washington University for their work including patients as partners in their work.

24:39 - How to get involved in the Washington University project. These focus groups are underway. If spots fill up, you can still be part of the conversation with AiArthritis on this topic. Just sign up to learn more about this and our other research projects at  www.aiarthritis.org/research.  

26:32 - TIffany and Lisa break out to discuss the importance of continued shared-decision making as COVID-19 vaccination recommendations continue to evolve. They specifically cover the topic of the 4th vaccine for persons immunocompromised.  This is going to become its own “360” spin off segment under our RheumyRounds series. 

38:44 - AiArthritis has created a letter for patients having issues gaining the 4th dose to share with pharmacies. You can find this and other guidance at www.aiarthritis.org/covid19 

41:00 - Tiffany and Lisa close out the episode. Tiffany mentions to visit us on social media at @IFAiArthritis all platforms, email us at info@aiarthritis.org, and please support the show with a donation on our website! www.aiarthritis.org/donate. 

Find all our projects at www.aiarthritis.org/initiatives and make sure to sign up FOR FREE (all stakeholders) to our AiArthritis Voices program to learn about all our opportunities to be at the table! www.aiarthritis.org/aiarthritisvoices

 

________________________________________________________________

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.

JOIN TODAY!

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! 

Episode 69: Changing the World from Your Sofa! Meet the Volunteers

In this episode, Tiffany Westrich-Robertson (AiArthritis CEO) and Katie Simons (Senior Programs & Communications Manager) talk about the heart and soul of our organization - the volunteers! Meet five volunteers from around the world - Deb, Katie, and Leslie from the United States, Pooja from India, and Judy from Australia - hear from them just how much they've accomplished by joining our team and the impact they've helped us achieve!  Learn more about many of our programs and ways YOU can get involved in 2022! Patient voices and all other stakeholders welcome!

 

Learn more about the following programs mentioned in the episode:

• AiArthritis Voices
• AiArthritis Voices 360
• RheumyRounds
• A Community Team (ACT) - first immunology Innovation in Research winner, Celgene 2015
• A Community Team (ACT) II - utilizing data from atypical patients to justify when it's time to ensure treatment decisions are made by their doctors, who are ethically obligated to treat to the individual needs of patients. 
• World AiArthritis Day
• Still's Disease Awareness Day
• Preparing Patients for Precision Medicine
• COVID19 - Actemra Shortage
• COVID19- Shared Decision Making
• Go with Us to Conferences
• NEW IN 2022 - Advocacy/Public Policy Creative Patient-Led Learning!

Sign up to volunteer at aiarthritis.org/volunteer !

 

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.

JOIN TODAY!

 

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! 

 

 

Episode 69: Volunteering with AiArthritis

00:52 - Tiffany welcomes listeners.

01:04 - Tiffany is the CEO of AiArthritis and a patient living with non-radiographic axial spondyloarthritis.

1:11 - Tiffany is joined today by Katie, the Senior Programs Communications Manager at AiArthritis and a patient living with rheumatoid arthritis.

5:50 - Tiffany shares the origin story of AiArthritis as an organization.

14:20 - Tiffany and Katie discuss the role of volunteers in the AiArthritis organization.

16:41 - Judy - a volunteer from Australia - gives her volunteer testimony.

19:43 - AiArthritis strives to provide accurate information and a community space for aiarthritis patients.

22:42 - AiArthritis has developed a free online platform called AiArthritis Voices for all stakeholders to connect and find volunteer opportunities.

25:15 - AiArthritis provides information to patients about new treatment options.

25:49 - Deb Constein - a volunteer from Madison, WI and recurring co-host - gives her volunteer testimony.

32:17 - If we are working on something, volunteers have the opportunity to work on it!

35:49 - Patrice - a volunteer from California and recurring cohost - gives her volunteer testimony.

36:33 - Patrice is a great example of how many initiatives you can be involved in even as a new volunteer.

41:59 - Leslie - a volunteer from Michigan - gives her volunteer testimony.

45:38 - Pooja - a volunteer from India and recurring co-host - gives her volunteer testimony.

54:16 - If you are interested in advocacy, visit aiarthritis.org/advocacy

54:24 - Or visit aiarthritis.org/volunteer to learn about many opportunities for getting involved!

 

 

 

 

Episode 53: FDA Public Meeting Opportunity - Patients ”at the table”

This week join your patient co-host Danielle Dass as she reports back on her experience attending an American Food and Drug Administration (FDA) Public Meeting on behalf of the International Foundation for Autoimmune and Autoinflammatory Arthritis. The meeting was intended to gather information from patients, medical professionals, and industry personnel about the accessibility and utility of safety communications regarding medical devices to better inform FDA practices.

The mission of AiArthritis is to elevate and center the patient voice in global conversations with all stakeholders about solving problems facing the autoimmune and autoinflammatory arthritis patient community. This means sometimes we send representatives to participate in events hosted by regulatory agencies like the FDA or the European Medicines Agency (EMA). In this episode, Danielle will explain how you can get involved in this meeting and how you can participate in future opportunities.

After listening to the episode, if you would like to view the FDA safety Communications about medical devices or any other products, you can do so here: FDA Safety Communications

If you would like to leave feedback or comment on the safety communications linked above or any of the issues from the meeting discussed in the episode, please visit FDA Public Comment by January 19, 2021.

 

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.

JOIN TODAY!

 

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).

 

Show Notes: Episode 53 – “FDA Public Meeting Opportunity - Patients "at the table”

 

00:53 - Danielle welcomes listeners

01:05 - Danielle is a patient living with Rheumatoid Arthritis and Axial Spondyloarthritis

01:34 - Today’s episode is about Danielle’s experience participating as a panelist in a public meeting for the American Food and Drug Administration (FDA) about safety communications regarding medical devices

02:08 - AiArthritis seeks to center the patient voice in all conversations in the medical community that impact patients living with AiArthritis Diseases

02:21 - AiArthritis patients often use both implanted and assistive medical devices

03:39 - AiArthritis will use AiArthritis Voices to put stakeholders in touch with volunteers who are interested in participating in things like conferences, public meetings, and other events

05:34 - Danielle talks about the experience of participating as an equal stakeholder and encourages other patients to get involved

09:03 - AiArthritis was the only organization that sent a representative to speak for adult patients at the FDA meeting

09:18 - Danielle explains the purpose of the meeting and what types of information the FDA is seeking

12:23 - The FDA is particularly interested in getting safety information communicated to people who do not have access to the internet, but they did not invite anyone to the panel who could speak to that

13:23 - Danielle explains how listeners can submit comments that will be read by the FDA about safety communications

15:32 - If you are a patient or the parent of a juvenile living with an AiArthritis disease, please join us at aiarthritisvoices.org or visit aiarthritis.org/aiarthritisvoices to continue this conversation with us

15:57 - Danielle invites listeners to connect with us on all social media platforms @ IFAiArthritis or email us @ podcast@aiarthritis.org

16:06 - Danielle thanks listeners and asks everyone to consider supporting the show by donating at aiarthritis.org/talkshow

Episode 68: Rant Ahead! Together We Can Make Change

In this episode, AiArthritis CEO - and person living with axial spondyloarthritis - throws a topic on the table that everyone can relate to...ranting.

We all experience situations of frustration, when something we believe in, we want to happen, we wish could be different hits the point where we must vent. Sometimes that vent is to ourselves, other times it's public for all to see. We rant for support, to bring change, to be heard, or to get something off our chest. Regardless of the reason, sometimes it's just necessary. 

Tiffany introduces two issues that are directly related to ranting. The first builds on years of wanting for Patient Organizations to be more accepted and involved at American College of Rheumatology (ACR) annual conventions.

Are you affiliated with a Patient Organization - anywhere in the world - part of the rheumatic or musculoskeletal disease community and interested in uniting with other groups so, together, we can work towards more inclusion in future ACR meetings? Then CLICK HERE to sign on. OR, if you are affiliated with a research collaborative group (research institute, databank, government) and would like to sign on to support increased Patient Organization participation in future conferences, you are also invited to sign.  SIGNATURES REQUIRED NO LATER THAN DECEMBER 15TH, 2021!

A letter just for patients who want to have a voice in future advancement of a Patient Track at future meetings - this will be available in January 2022!

Then, Tiffany introduces a new initiative at AiArthritis - Caution: Rant Ahead! Realizing there is no where in our community for people affected with AiArthritis diseases to vent privately, we started a venting platform. Submit your rant, which will not be visible to others outside of our organization. Submit anonymous or leave your name and email, it's up to you. Rants submitted may be discussed on future episodes of this show, on social media, or if enough patients rant about the same issue then maybe even a project! Submit your own rant here: https://www.aiarthritis.org/rant 

 

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.

 

JOIN TODAY! 

 

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).

 

Episode 68: RANT AHEAD! Together We Cannot Fail

00:52 - Tiffany welcomes listeners.

01:06 - Tiffany is the CEO of AiArthritis and a patient living with non-radiographic axial spondyloarthritis.

05:28 - One of the programs we have at AiArthritis is “Go With Us to Conferences” which is an initiative to bring patients with us to the two major scientific conferences we attend every year:  ACR (American College of Rheumatology Annual Conference) and EULAR (European Alliance of Associations for Rheumatology).

07:20 - This year when Tiffany registered the team attending for 2021, she was annoyed that there was no pass option for Patient Organizations.

09:28 - AiArthritis did not want to attend as sponsors of a booth as we have in past years because our team cannot attend the sessions if they are working a booth.

12:10 - ACR offered passes only for individual rheumatology professionals and members of the press.

14:08 - ACR has an extensive list of individuals who should be members, but patients, patient representatives, and patient organizations are not included on the list.

15:09 - Tiffany made a post on Facebook about her frustrations that patient organizations are excluded from the ACR Annual Conference and Membership.

15:23 - The post received a lot of attention from other patient organizations and patient advocates who have also experienced feeling unwelcome by the ACR.

15:44 - The ACR contacted Tiffany and scheduled a meeting to discuss her concerns.

17:00 - ACR has agreed to include patient representatives and patient organizations in membership and registration options moving forward.

19:52 - There is an open letter other patient organizations can sign on or before December 15, 2021.

21:18 - A letter for patient representatives will be available in January of 2022.

21:34 - You can find all the sign-on letters at aiarthritis.org/ACR

21:43 - This experience led to the realization that patients need a place to rant about issues they are facing in the AiArthritis community.

22:18 - AiArthritis is adding a button on our website that patients can use to rant or vent privately about problems they are having without judgement.

22:37 - Topics that receive the most traffic via this button will become show topics and organizational initiatives.

23:11 - This feature can also be found at aiarthritis.org/rant.

23:27 - Find us on the web at aiarthritis.org or @IFAiArthritis on all social media platforms.

 

Be sure to check out our top-rated show on Feedspot!

 

Episode 67: Making Informed Decisions in Unprecedented Times - Focus on Actemra Shortage

This week join your recurring patient co-hosts Tiffany Westrich-Robertson, Katie Simons, and Deb Constien as they discuss the importance of making informed decisions in the management of aiarthritis diseases in unprecedented times. Our hosts will tackle this issue - as well as the related Actemra shortage, which is forcing patients, like Deb, off of the medications that work best for them in order to accommodate hospitalized COVID patients (most which are unvaccinated).

In order to participate in shared decision-making, patients must have access to accurate and updated information about treatment options, vaccinations, and other pressing health concerns. But how do you know the information you are receiving is accurate in a world where anyone can publish a study without peer review or share a fake website on social media? How do you make the decision that is best for you, your family, and your community when faced with opposing messaging from multiple sources? And what happens when other people’s poorly-informed decisions impact your access to the medicine you need to function?

This is an important episode for everyone to hear whether you are a longtime patient with an aiarthritis disease or a member of the public with no known connection to an aiarthritis patient. Decisions have consequences, and sometimes the consequences impact other people you may not even know.

Please read our Press Release about the Actemra shortage and share with others so they can make fully informed decisions about vaccinations. 

If YOU have been impacted by losing access to Actemra, tell us about it HERE.

 

Episode 67: Show Notes

00:52 - Tiffany welcomes listeners.

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

01:30 - Today Tiffany is joined by fellow patient co-hosts Deb Constien and Katie Simons.

01:56 - Deb is a patient living with Rheumatoid Arthritis since the age of 13.

02:58 - Katie is a patient living with Rheumatoid Arthritis.

03:51 - Today’s episode is about making informed decisions in unprecedented times.

04:22 - Tiffany reviews the mission of AiArthritis, as well as the way we tackle initiatives.

07:39 - Deb has been having success with Actemra infusions, but there is currently a shortage as hospitals are buying all of the available doses to treat COVID-19 patients.

09:36 - Deb has significant damage in her hands from long-term RA, so she is not able to administer her own injections.

10:42 - Actemra infusions are stronger than Actemra injections, and rheumatologists are not able to modify the dosage of the injections to make them stronger.

12:16 - Social media is a source of news alerts for many people, but not all of the information they are getting is accurate or clear.

13:51 - Different countries are in different stages in terms of COVID-19 spread, vaccination availability, and medication availability.

16:00 - It is important to pay attention to local news to be informed about vaccine availability because it varies so much based on location.

16:47 - AiArthritis maintains a COVID-19 web page for updated information and current recommendations for immunosuppressed people at aiarthritis.org/covid

18:30 - Deb is in more pain since switching from Actemra infusions to Actemra injections.

19:01 - Genentech is the manufacturer of Actemra, and Deb wonders whether they will increase production of Actemra infusion medication so she can get back on her medicine.

21:03 - Shared decision-making is talking to your rheumatologist, getting all of the information, and then making the best decision together for your treatment based on your individual needs and preferences.

23:22 - Katie’s medication is also on the list of those being used for COVID-19 patients, and she is worried that shortages may impact her as well in the future.

24:26 - Patients are also concerned about upcoming shortages of injectable medications.

25:15 - AiArthritis patients require their medications to function on a daily basis. Their quality of life will be significantly negatively impacted if they cannot access their medications.

26:00 - AiArthritis medications are not interchangeable. What works for one patient does not work for another. Patients cannot just swap medications without consequences if their medications are not available.

27:03 - Actemra is the only drug approved so far for treating hospitalized COVID-19 patients. Hopefully as more drugs are approved, shortage issues will resolve.

27:25 - A high percentage of people who are hospitalized and needing Actemra are unvaccinated for COVID-19.

27:51 - When deciding whether or not to get a COVID-19 vaccine, AiArthritis asks you to consider that if you contract COVID-19 and require Actemra treatment, you are taking medicine away from people who need it.

28:44 - Biologic injections and infusions are complicated to manufacture and take a long time to produce.

30:03 - Some of the Actemra shortages are due to hospitals stockpiling the medicine in anticipation of needing it.

31:36 - AiArthritis patients should not have to sacrifice their quality of life because there are enough vaccines and medications to go around if everyone is making responsible choices and not hoarding.

34:16 - It can take 3-6 months for a new medication to take effect (if it is even going to take effect), and that entire time patients are incurring more damage.

40:50 - Educate your family and friends about the impacts to the AiArthritis community of choosing to not be vaccinated for COVID-19. 

43:49 - The Actemra shortage is a crisis situation for the AiArthritis Community, but it hasn’t been well publicized, and not everyone understands that their decision to not be vaccinated is hurting other people.

46:01 - Misinformation is everywhere, especially on social media.

46:23 - Much of the information online has not been peer-reviewed because the situation is changing so fast, and everyone wants to publish their findings immediately even without corroboration.

48:53 - While a lot of information is constantly changing, one fact we know to be true is that the majority of people hospitalized with COVID-19 are unvaccinated.

49:19 - The CDC just published information indicating that no other demographic indicator made people more likely to be hospitalized than simply being unvaccinated.

50:59 - AiArthritis will be taking a team to the American College of Rheumatology 2021 Conference, and you can participate remotely by following along via the “Go With Us to Conferences” program on our AiArthritis Voices platform.

55:01 - To sign up for AiArthritis Voices, visit us online.

55:13 - You can also access the “Go With Us To Conferences” feature here.

56:10 - For updated information specifically on the Actemra shortage, you can follow our coverage here.

56:37 - You can always find us on social media @IFAiArthritis on all platforms.

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.

 

JOIN TODAY! 

 

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!

 

Episode 66: The Pathway of Patient Engagement in Rheumatology Research

This week join your patient co-hosts Tiffany Westrich-Robertson, Cheryl Koehn, and Maarten de Wit as they introduce us to the Pathway of Patient Engagement in Rheumatology Research. Tiffany is the founder and CEO of AiArthritis. Cheryl Koehn is the founder and President of Arthritis Consumer Experts - Canada’s largest patient organization. Maarten is the Chairperson for the Study Group for Collaborative Research for EULAR (European Alliance of Associations for Rheumatology). 

Tiffany, Cheryl, and Maarten are all leaders of the ACTion Council - an organization dedicated to preserving the past and advancing the future in patient-involved rheumatology research. The ACTion Council consists of stakeholder groups from patient organizations, health charities, coalitions, non-pharmacologic researchers, government agencies/initiated programs, and industry. Between 60 – 75% of those invited to participate have engaged in research collaboration as patient stakeholders. 

Today’s episode is about the Pathway of Patient Engagement in Rheumatology Research, the first deliverable produced by the ACTion Council. The purpose of the initial Pathway is to trace the evolution of patient engagement in rheumatology research, including identifying historical milestones, novel “firsts”, and tools. Then, as patient involvement continues to popularize and branch off into different directions, new entries can be added. New entries will be collected and added in the second half of 2021, and the Pathway will be updated bi-annually.

Tune in to this episode to learn why the Pathway is important, how it can be helpful to you as an AiArthritis stakeholder, and how to avoid tokenism when you want to participate as a patient research partner in rheumatology research. 

 

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.

 

JOIN TODAY! 

 

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).

 

Episode 66: The Pathway of Patient Engagement in Rheumatology Research

 

00:52 - Tiffany welcomes listeners.

01:20 - Tiffany is joined by fellow patient co-hosts Cheryl Koehn and Maarten de Wit

02:24 - Cheryl is a person living with Rheumatoid Arthritis and works for Arthritis Consumer Experts - Canada’s largest patient organization.

04:29 - Maarten is a person living with Psoriatic Arthritis and the Chairperson for the Study Group for Collaborative Research for  EULAR (European Alliance of Associations for Rheumatology).

07:40 - Today’s episode is about Patient Engagement in the Rheumatology research space and the Pathway of Patient Engagement in Rheumatology Research as developed by The ACTion Council.

08:44 - Tiffany explains the origin of the Pathway project.

10:36 - Cheryl explains how she originally became involved in research collaboration.

18:02 - In 2017, AiArthritis organized a roundtable of the people most involved globally in patient engagement in rheumatology research.

20:13 - The Pathway to Patient Engagement was created by a group of stakeholders that grew out of that roundtable meeting called The Action Council.

21:18 - The Action Council is a patient-led initiative, and 70% of the members are patients living with rheumatic disease.

23:10 - A patient research partner (a term coined by Maarten originally) is a patient who has an equal role on a research team, collaborating on an equal level with other researchers at every stage of the research.

25:41 - The goal of patient research partners is to make the research more patient-centered and more fitting of patients needs and beneficial to improving patients’ daily lives.

25:55 - Patient research partners should ideally be co-authors of the final research publication.

27:21 - Cheryl believes that incorporating patient research partners and having them co-author research publications is the “moral, ethical thing to do.”

27:39 - Living daily with arthritis requires a lot of skill that non-patient researchers do not possess. These skills are fundamental to good research.

29:28 - The patient engagement / patient researcher model must be strategic, scalable, and sustainable.

32:40 - One of the goals of the Pathway is to avoid Tokenism in research initiatives.

33:25 - Simply mandating patient involvement in research doesn’t work due to problems with tokenism.

34:21 - Creators took care to make the Pathway a user-friendly instrument.

35:03 - Mandating patient engagement in research (for funding) is necessary to get researchers to change their methodology, but it is incumbent on the patient community to safeguard against tokenism.

36:38 - One thing you can do to safeguard against tokenism is to refuse to cooperate with any research project trying to recruit patients at the last minute before a funding deadline.

37:35 - If you are offered a position on a research team that does not include co-authorship, refuse it.

37:51 - If you are not given a power title, you will not hold power in the project.

38:26 - The Pathway is a great place to learn if you are new to patient participation in research, but it is also a great place to find models for research if you are already a leader in patient research.

39:59 - Community-led research can be valid, published research even without major research organizations or funding sources involved.

41:24 - You can find the Pathway at rheumactioncouncil.org or on social media @rheumcouncil.

43:43 - There are videos on the website that explain in detail what the tool is and how to use it.

47:04 - Any stakeholder can contribute to the Pathway.

48:16 - You can also find any of our previous podcast episodes at aiarthritis.org/talkshow or on any podcast platform.

Be sure to check out our top-rated show on Feedspot!