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On Sunday, join International Foundation for AiArthritis and fellow patient cohosts as they lead discussions in the patient community as well as consult with stakeholders worldwide to solve the problems that matter most in the AiArthritis community.
Episodes
Sunday Apr 19, 2020
Sunday Apr 19, 2020
This week join your patient co-hosts Tiffany Westrich-Robertson, CEO of International Foundation for AiArthritis, and Estela and Juana Mata, co-founders of Looms 4 Lupus, as they discuss the current lack of diversity represented in clinical trials and the need to include all demographics in trials so the therapies that go to market are representative of the real patient population who are using them.
Estela and Juana's expertise from symposium and conference attendance, in addition to Juana's personal experience in trials, helps us to understand both the ethnic barriers to participation and why diversity in clinical research is so important. Tiffany and the Mata sisters discuss continued efforts to include diverse groups in research, especially as we move towards precision medicine, by joining forces on projects like our award-finalist "Preparing Patients for Precision Medicine" project.
In this episode, we use our expertise as people living with AiArthritis diseases to explore trial inclusion challenges and explain the steps necessary to get diverse populations interested in research. The first step is education and building trust, the next step is getting doctors to talk more about trial options. These efforts are underway through our existing projects, but we need YOUR input - the patient experts - to complete them.
Do you want to learn more about participating in existing trials or future precision medicine trials? Would you like to join in on conversations with Estela, Juana, and Tiffany so, together, we can develop the educational materials necessary to help expand diverse inclusion in research?
Learn more about your Co-Hosts and how you can help us improve diversity in clinical trials HERE.
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!
Show Notes: Episode 24 – “Ethnic Diversity Needed in Clinical Trials”
00:52 - Tiffany welcomes listeners and co-hosts Estela and Juana Mata, co-founders of Looms for Lupus
2:22 - Looms for Lupus is a non-profit organization that provides support for people living with Lupus and other overlapping chronic diseases like fibromyalgia or rheumatoid arthritis
2:40 - The Mata Sisters began Looms for Lupus after Juana was diagnosed with Systemic Lupus Erythematosus and Rheumatoid Arthritis
5:29 - Clinical trials are clinical medical research involving people and are either observational or experimental
5:57 - Clinical trials have four phases with increasing pools of participants
8:27 - Lack of awareness of clinical trials among minority communities may contribute to a lack of diversity in participant pools
10:45 - When Juana first told her mother she intended to participate in a clinical trial, her mother was concerned that she might be a human “guinea pig”
11:34 - One reason people may be hesitant to participate in clinical trials is that they don’t know if they will have access to the results of the study
12:40 - Juana found a clinical trial through a Facebook advertisement
13:10 - Participants in clinical trials may get access to excellent doctors
13:38 - Not all rheumatologists will encourage their patients to participate in clinical trials, but you can still become a participant based on your own interest
17:17 - Diversity in clinical trials is critically important because using a narrow pool of homogenous participants will skew the quality of the results since all patients are unique
18:56 - Lupus is more common among black, hispanic, and asian / pacific islander patients than white patients, so it’s a problem if clinical trial participants for Lupus treatments are predominantly white patients
22:15 - 12% of the American population is black, but only 5% of clinical trial participants are black
22:35 - Latinos make up 16% of the US population, but only 1% of clinical trial participants are latino
24:20 - Educating the entire community is necessary to increase support for participation
24:55 - Patients may also be afraid that participating in a clinical trial could harm them, so these fears need to be addressed to increase participation rates
26:51 - Juana first joined a clinical trial in the hopes of accessing a more effective medication for her Lupus
28:16 - Most participants in the AiArthritis community are seeking more effective treatments
28:38 - Patients with well controlled AiArthritis diseases are very reluctant to join clinical trials because they do not want to endanger their current effective treatment
29:14 - Not all clinical trials require patients to take new medications, so even patients with well controlled diseases can make a difference to the community by participating in surveys or other types of trials
31:17 - Some clinical trials use apple watches or fitbits to collect data from patients
31:26 - Juana and Estela are participating in the All Of Us Research program through the US National Institute of Health
34:30 - clinicaltrials.gov is a resource patients can use to locate clinical trials (even trials outside the US)
38:26 - COVID-19 has caused the medical community to embrace telemedicine, which may expand opportunities for clinical trials for people with transportation limitations
44:11 - If all members of the AiArthritis community participated actively in clinical trials, we would all benefit from having better treatments available sooner
44:50 - Minority patients must be afforded an opportunity to share their reasons for not being willing to participate in clinical trials because there is a significant history of discrimination of minority patients in medical research, as well as ongoing issues with discrimination of minority patients in healthcare settings
48:48 - One of the best ways to reach minority communities is to have members of those communities take leadership roles as spokespeople at symposiums or other educational events
52:37 - Diversity among patient advocates is critically important because people trust others who have as much in common with them as possible
53:36 - Healthcare providers need to be educated on clinical trials as well because patients are more likely to trust the information when it comes from the physician they already trust
54:15 - Physicians with a full patient load do not have time to research available clinical trials for each of their patients
54:39 - Clinical researchers should provide information to providers directly if they want to recruit more patients who fit a particular profile
55:27 - AiArthritis is working with some researchers from OMERACT to create a shared decision tool to facilitate conversations between patients and their physicians about clinical trials and precision medicine
57:52 - The Center for Information and Study on Clinical Research Participation (CISCRP) has a wealth of information about clinical trials at their website ciscrp.org
58:26 - Find the Mata Sisters on Twitter, Facebook, or Instagram @Looms4Lupus or on the web at looms4lupus.org
59:00 - Join the Mata Sisters for live Facebook chats every second Saturday of the month (in Spanish)
1:00:11 - Find AiArthritis @IFAiArthritis on all social media platforms or at aiarthritis.org/podcast
1:00:44 - Join our Facebook group or email us at podcast@aiarthritis.org to comment on this or other episodes
Wednesday Apr 15, 2020
Wednesday Apr 15, 2020
Welcome to this week’s episode of AiArthritis Voices 360: At The Table. This week, join patient co-hosts Danielle and Kristen as they discuss the use of gloves to protect yourself from contracting COVID-19. Do gloves provide added protection from the virus? What is the “right way” to use them? Listen to our conversation about whether to wear gloves and how to wear them if you choose to do so. Then join us in our Facebook COVID-19 group to let us know what choices you are making to protect yourself and your family.
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!
Sunday Apr 12, 2020
Sunday Apr 12, 2020
Welcome to AiArthritis Voices 360. This week join your patient co-hosts Danielle Dass and Kristen Ray as they discuss all things masks and COVID-19. What sorts of masks do healthcare providers need to keep themselves and their patients safe? What happens if hospitals run out of masks? Should people be wearing a mask when they leave their home during social distancing? Do cloth masks offer protection from the virus? Tune in for the answers to these questions and more as we seek to help you navigate this pandemic with our ongoing COVID-19 series.
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).
Show Notes: Episode 21 – “Prevention Focus: Masks”
00:52 - Danielle welcomes listeners and patient co-host Kristen to the show
01:38 - Kristen introduces herself
02:12 - Kristen is a patient living with ankylosing spondylitis
03:58 - Kristen is an ophthalmology nurse
04:11 - COVID-19 can be spread by touching your eyes, nose, or mouth
04:38 - Today’s topic will deal with masks and whether wearing a mask can help protect you from contracting COVID-19
04:57 - Neither AiArthritis nor the Spondylitis Association of America will be issuing an official recommendation on whether or not patients should wear masks. The episode will provide reliable information that listeners can use to make their own decision regarding their own personal safety
06:27 - PPE refers to protective clothing like helmets, goggles, gloves, masks, etc that are designed to protect healthcare providers from infection or injury
08:09 - Everything has changed in terms of how HCPs see patients and use PPE
09:06 - Kristen’s office is only seeing emergency patients
09:10 - The amount of PPE gear needed to see patients has dramatically increased even though the patient load has been restricted to just emergencies
11:59 - Healthcare provider needs for PPE have increased, resulting in a global shortage of available gear
12:49 - Smaller hospitals in the US may not have the money to purchase more PPE because most of their income is derived from elective surgeries which have all been suspended
14:40 - Surgical masks are designed to create a physical barrier between the wearer and patients
15:13 - The N95 respirator mask creates a seal and then filters airborne particles so that the wearer is not breathing in any viral particles
16:25 - Neither surgical masks nor N95 respirator masks are intended to be reused
17:13 - People wearing N95 masks who have not been trained to use them will not be protected from COVID-19 with the same efficacy as a healthcare provider who has been trained to use them
17:43 - N95 respirator masks only filter 95% of viral particles when used correctly. With common usage, they are not significantly more effective than surgical or cloth masks.
19:58 - Never touch your face while wearing a mask
20:06 - Tie back hair so that you are not tempted to brush it out of your face
20:16 - Use medical tape to seal edges on the bridge of the nose and along the sides of the nose
21:19 - When putting on your mask, hold it by the straps or loops as far as possible from the piece that covers your face
21:30 - Position the mask along the bridge of the nose first, position it under your chin, and then fasten the attachments
21:42 - Do not touch the square portion of the mask that covers your face
21:53 - To remove the mask, repeat this procedure and again avoid touching the square portion of the mask
22:25 - Wash cloth masks immediately after every use
22:30 - DO NOT remove your mask after leaving a store, allow it to drape around your neck, or place it in your bag or purse as the masks may be covered with viral particles
23:08 - Wash hands before and after putting on or removing a mask
23:19 - Wearing a mask and using it improperly may put the wearer at more risk of contracting COVID-19 than not wearing it at all
24:32 - Kristen explains the 6 options the CDC recommends for hospitals who do not have enough masks for their healthcare providers
27:56 - Using cloth masks is the absolute last resort recommended by the CDC because cloth masks are not considered effective PPE and their ability to protect HCPs is unknown
32:01 - The CDC has started to recommend that members of the American public wear cloth masks when outside of their homes
32:16 - Up to 25% of the people who are spreading the COVID-19 virus are asymptomatic
32:55 - Cloth mask wearing in public has become very common in parts of Asia since the 2003 SARS epidemic
33:56 - Community-wide wearing of masks protects the community because cloth masks are effective at preventing the spread of the virus when worn by the infected person
35:50 - A 2015 study found that cloth masks only blocked 3% of viral particles
36:29 - Some studies performed recently found that cloth masks could block as much as 60% of viral particles, but the design of the experiment raises questions about whether that means cloth masks will protect the wearer from COVID-19
37:38 - Individuals must continue to take all previous precautions (social distancing, hand washing, etc) even when wearing a cloth mask
39:10 - Some rudimentary cloth masks can be fashioned out of a bandana and some hair ties
39:22 - Some homemade cloth masks include filters made out of vacuum cleaner bags, air filters, or even panty liners
40:00 - Never touch the square portion of the mask when putting it on or taking it off, and make sure to wash your hands before and after touching the mask
40:07 - Frequent hand washing is still the best way to protect yourself from COVID-19
41:13 - If you are going to wear a mask, you still need to clean all the surface areas around you because the mask does not provide 100% protection from the virus
41:38 - Wear your mask until you return to your house and can put it directly into the washing machine
43:22 - Cloth masks can pose a health risk to immunocompromised wearers
47:10 - If you want to donate homemade masks to healthcare providers, contact your personal physician’s office and ask if they are accepting them.
48:20 - Local police departments and grocery delivery workers may also be accepting donations of homemade masks
49:03 - Danielle invites listeners to join our new Facebook group @IFAiArthritis to learn more about this and other topics
49:17 - Private comments may be directed to AiArthritis via FB, Twitter, or Instagram message @IFAiArthritis or emailed to podcast@aiarthritis.org
49:31- Find this and all our episodes at www.aiarthritis.org/podcast, or visit www.aiarthritis.org/covid19 for all our COVID-19 related resources
Wednesday Apr 08, 2020
Wednesday Apr 08, 2020
Welcome to this week’s episode of AiArthritis Voices 360: At The Table. This week join Effie Koliopoulos, the talent behind the Rising Above RA blog, as she talks about the similarities between the AiArthritis experience and the COVID-19 pandemic experience. Could your experience help you to empathize with the people directly impacted by the pandemic? Will this experience help others to better understand the challenges faced by our community?
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!
Sunday Apr 05, 2020
Sunday Apr 05, 2020
Welcome to AiArthritis Voices 360. This week the show is celebrating 40 brilliant episodes by revisiting some of our previous conversations with experts in the field of autoimmune and autoinflammatory rheumatic diseases. We have featured rheumatologists, clinical researchers, and medical anthropologists in addition to our many patient co-hosts with expertise of their own. If you are new to the show, this will give you an opportunity to catch up on what our experts had to say about their work. Tune in and then join us to add your voice to these ongoing conversations.
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).
Show Notes: Episode 20 – “Highlighting the Experts”
00:52 - Tiffany welcomes listeners to the show
01:02 - Today’s episode will be a highlight reel featuring four of the episodes that have previously aired on AiArthritis Voices 360 for those who may have missed them
02:40 - Tiffany introduces Dr. Apostolos Kontzias from the Center of Autoinflammatory Diseases
03:12 - Dr. Kontzias explains the distinction between autoimmune and autoinflammatory, which both stem from the immune system, just different sides (“innate” vs “acquired”)
04:32 - Autoinflammatory patients usually lack laboratory markers for autoimmune disease - despite inflammatory symptoms - which can cause a diagnostic delay
04:55 - Both autoimmune patients and autoinflammatory patients can present with arthritis and other common features (fatigue, varying degrees of fevers)
05:48 - Autoinflammatory syndromes are innate (of unknown cause, from the primal part of the immune system) and thus can present early in life, but some do not present until adulthood
07:14 - Either type of immune response may be initially triggered by environmental factors, but also environmental factors can trigger disease activity
07:44 - Viral infections can trigger autoinflammatory syndromes
07:57 - Menstruation can trigger increases in symptoms for female patients for either type of disease
08:27 - Some conditions “bridge” the two types and can have features of both adaptive and innate immunity.
09:46 - By definition, patients with autoinflammatory conditions have an immune system that does not recognize the patient’s own structural components of their cells
10:49 - Fevers and rashes are often markers for autoinflammatory conditions. General markers for inflammation without laboratory results that support traditional autoimmune diagnoses are also predictive of autoinflammatory conditions
13:09 - Tiffany thanks Dr. Kontzias for his time
13:21 - Tiffany welcomes Kaleb Michaud from FORWARD Databank
13:49 - Registries monitor patient journeys to benefit scientific understanding of rheumatic diseases
14:51 - Kaleb explains his decision to become a medical researcher
16:07 - Tracking patient symptoms over time can lead to more accurate diagnosis and treatment because patients may not be aware of incremental progression
17:48 - Long questionnaires encourage patients to thoroughly interrogate their own health and reflect on how they are doing
18:44 - One patient, Mary Felstiner, wrote a book titled Out of Joint about the experience of completing the questionnaires.
21:20 - People who participate in registry studies statistically live longer than patients who choose not to participate.
22:15 - Tiffany is joined by patient co-host Deb Constein and Dr. Aurélie Najm, a rheumatologist and clinical researcher currently serving as the co-chair for the European League Against Rheumatism’s Synovitis Study Group
22:49 – Aurélie introduces herself
22:57 - She is researching providing tailored treatments to patients with rheumatoid arthritis
23:27 - Aurélie is the co-chair of the EULAR Synovitis Study Group, which is studying synovial tissue to determine the best treatment for each patient
24:07 - Tiffany and Deb are patient research partners for OMERACT
25:37 - Patterns of inflammation within the synovial tissue can predict the future evolution of disease for that patient and which anti-rheumatic drugs may be more effective for that patient
26:45 - AiArthritis is interested in this research because we support anything that reduces delays in getting patients access to the right treatment
28:00 - Deb discusses her experience with joint biopsy procedures
30:38 - The two methods available for obtaining synovial samples from joint spaces are arthroscopic or ultrasound guided biopsy
32:13 - Explaining the purpose of any procedure to the patient, especially when procedures are for clinical research and not necessity, is critically important.
33:40 - Volunteering for procedures to support clinical research is “an investment in the future.”
34:35 - IFAA seeks to help researchers develop the right protocols to recruit patient participants
34:54 - Visit aiarthritis.org/podcast to learn how you can help
35:14 - Tiffany introduces special guests Dr. Alfred Kim and Jerik Leung, who have done research on patient needs and communication barriers
35:56 - Tiffany explains the goals of the Rheumy Rounds Series
36:54 - Jerik’s research showed that patient goals did not always align with the physician’s goals, especially relating to medications and side effects
38:44 - Dr. Kim says the primary goal of rheumatologists is to determine what is actually going on with the patient. Are additional testing or imaging studies necessary? Are the notes from the previous doctor or patient provided information enough?
39:35 - Practicing Rheumatology is somewhat similar to practicing psychiatry in that there are usually not clear cut answers divined from test results. The physician has to review as much information as possible to arrive at a correct diagnosis.
40:34 - Rheumatologists must also prepare to have a difficult conversation with patients if the diagnosis doesn’t align with what they have been told previously or what they believe or don’t believe they have
41:11 - Sometimes patients arrive at a new doctor with incorrect information in their chart because a previous doctor had to use a certain diagnosis - even if it wasn’t the correct one - so the patient could get access to a needed medication
42:30 - For many physicians, the emotional aspects of the disease aren’t actionable from a clinical perspective.
43:14 - Patients may be on the defensive at the outset of appointments due to previous negative interactions with rheumatologists
44:06 - Learning to advocate for yourself is necessary for patients living with chronic illnesses
46:06 - Mutual trust is critical between the patient and physician
46:59 - Occupational therapy support may increase patient compliance with their treatment plan and help them and their caregivers achieve a better quality of life
47:40 - Physicians may not address complaints from patients that they are not equipped to handle, but they should be able to refer the patient to someone who can help them
49:01 - Most common reasons people “fire” their doctor: they feel unheard or treatments are not meeting their expectations
50:27 - Both doctors and patients could potentially benefit from training on how to interact positively and productively with each other
52:56 - Tiffany invites listeners to join our new Facebook group @IFAiArthritis to get involved
Wednesday Apr 01, 2020
Wednesday Apr 01, 2020
Welcome to this week’s episode of AiArthritis Voices 360: At The Table. This week join Bridget Dandaraw-Seritt, founder of the Canna Patient Resource Connection, as she tackles myths and misinformation circulating about CBD and COVID-19. Is it true that CBD can kill the coronavirus? Can the alleged anti-inflammatory properties of CBD protect you from a COVID-19 initiated cytokine storm? Does CBD have antiviral properties? Find out the answers to these questions and more.
Listen and then take your seat "at the table" by joining Bridget at our new COVID-19 & AiArthritis Facebook group. This and all COVID-19 specific episodes will be posted in that group, so the conversation does not have to stop here!
You can also listen to our original CBD - It's EVERYWHERE (Episode #16) in our show list or find it on its' own episode page on our website at https://www.aiarthritis.org/podcast-ep16
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!
Sunday Mar 29, 2020
Sunday Mar 29, 2020
Welcome to AiArthritis Voices 360. This episode join your hosts Kelly Conway and Charis Hill to discuss COVID-19 and the potential impact on the AiArthritis Community. This is the third episode in a breakout series on COVID-19 and what you can do to protect yourself during the pandemic. They will discuss raising awareness for the risks experienced by disabled and chronically ill people during the pandemic and what you can do to join the movement. They also dive into being discriminating about the reliability of sources when reading about COVID-19 and prioritizing your mental and emotional wellness during social isolation.
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).
Show Notes: Episode 21 – “High Risk COVID-19”
00:52 - Kelly welcomes listeners
02:23 - Kelly lives with Rheumatoid Arthritis
02:37 - Today’s topic is the high risk community of AiArthritis patients living during a COVID-19 outbreak
02:45 - Kelly welcomes patient co-host, Charis, who lives with Ankylosing Spondylitis
03:19 - In the beginning of the outbreak, the messaging focused mostly on the fact that children were not at risk and the elderly and people with compromised immune systems were in the most danger
05:50 - Charis drafted language in a social media post that was adopted by their local mayor to communicate to the public that individuals at increased risk from COVID-19 needed others to practice socially responsible behaviors to help thwart the spread of the virus
06:50 - Charis has been spreading the message that it is everyone’s job to stay home so that everyone doesn’t get sick instead of the idea that immunocompromised people should self-isolate if they want to be safe
07:44 - All people need to stay home as much as possible to prevent asymptomatic carriers from spreading the virus to vulnerable members of our society without knowing it
08:51 - Charis explains the origin of #HighRiskCOVID19
12:34 - It’s important to put a face to the category of “high risk people” so that the public understands who all they are protecting when they are practicing social distancing
14:57 - Before her workplace closed, Kelly was approached by multiple people concerned about whether she was at risk, but she didn’t know the answer
16:12 - CreakyJoints is a great resource for reliable information and support during the COVID-19 pandemic
16:36 - If you are concerned about conflicting information, you should consult with your personal physician who is familiar with your condition about the best way to proceed
16:58 - The Spondylitis Association has also issued a resource document for Spondyloarthritis patients about COVID-19
17:11 - Check sources on any articles you find online because there is a lot of misinformation floating around the internet
17:26 - Patients living with chronic illness and disabilities may be more prepared than the general population to avoid infection during a pandemic
18:16 - We know what to do to protect ourselves, but we are also relying on the community to keep us safe because this virus is so dangerous for disabled and chronically ill people
18:28 - Charis and Kelly share the end of life plans they have made in case they contract a fatal case of COVID-19. These plans allow them to live without anxiety, NOT because they are being pessimists
20:40 - It’s important that everyone be patient and kind with people who are still working - especially healthcare professionals
21:22 - If you are healthy and have been stockpiling medical supplies, please consider sharing them with people who need them now
26:05 - Everyone knows someone who works in the healthcare, service, or food industry putting themselves at risk, and the least we can all do is to avoid unnecessary trips out
27:04 - You can be a superhero right now by doing nothing and staying at home
27:46 - People probably need to take breaks from COVID-19 news to preserve their mental health
30:43 - People need to prioritize social connections (while social distancing) to preserve their emotional wellness
32:05 - People who deny the seriousness of this virus may be clinging to that belief to manage their own anxiety
33:08 - Schools and employers have been claiming for years that remote work or remote learning is not possible, but now it is suddenly possible when able-bodied people need it
33:58 - Follow #Accessibilityforableds to see how frustrated disabled people are that the accommodations they’ve been told were impossible are now available to everyone
34:18 - Disabled people hope that these distance policies will remain possible after the virus
36:42 - This is the first time in a long time that teachers have had the freedom to educate their students without having materials forced on them by publishers, politicians, and administrators. Kelly hopes that will be a catalyst for change in public schools after the virus
38:40 - There is no one look for being high risk or vulnerable
39:29 - Many of the symptoms that people with AiArthritis diseases live with every day are documented COVID-19 symptoms, and that can cause anxiety for people who are trying to decide if they are flaring or sick
40:12 - Get in touch with your doctor if you think you need to be seen because any trip to urgent care or the ER is likely to expose you to the virus
44:04 - We probably won’t know much conclusively about the virus for several years because researchers will need to repeat experiments multiple times and have research peer reviewed before it will be accepted as fact
45:29 - Kelly thanks Charis for taking the time to do this episode despite being ill
45:54 - The COVID-19 special episodes are currently airing during the regular AiArthritis Voices 360 dates and times, but they will soon branch out into their own series so that patients wishing to take a break from COVID-19 news can listen to our regular show
46:35 - For more information on COVID-19, you can join IFAA’s COVID-19 group on Facebook by connecting to our page @IFAiArthritis
47:09 - We will also have many COVID-19 resources available @ aiarthritis.org/COVID19
47:19 - If you would like to take a seat at the table, visit us on the web at aiarthritis.org/podcast, on social medias @IfAiArthritis on all platforms, or email us @ podcast@aiarthritis.org
Wednesday Mar 25, 2020
Wednesday Mar 25, 2020
Welcome to this week’s episode of AiArthritis Voices 360: At The Table. This week Tiffany has an important announcement. A case of pneumonia has accelerated the planned timeline for the show, and our team of talented co-hosts from all over the world will be taking over leading the show while Tiffany recovers. We invite you to visit our website to and click on “Meet Our Team" get to know them better. Tiffany also discusses the plans to continue coverage of the COVID-19 pandemic while simultaneously continuing our regularly scheduled shows. Listen in and get the scoop on the immediate future of the show and all of the COVID-19 resources we are assembling for you.
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).
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Sunday Mar 22, 2020
Sunday Mar 22, 2020
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).
Show Notes: Episode 20 – “COVID-19 & AiArthritis: Special Series Episode 2”
00:52 - Tiffany welcomes listeners and co-host, Matt Iseman, host of American Ninja Warrior
01:37 - Tiffany and Matt welcome special guest, Dr. Alfred Kim, a rheumatologist with Washington University
03:08 - Dr. Kim is fielding many questions from patients and other physicians about COVID-19
05:05 - Viral infections tend to wreak more havoc on patients who are immunosuppressed (either by disease or medications)
05:34 - Anecdotal evidence suggests there is a subset of patients with COVID-19 who have too much inflammation and may be helped by immunosuppressive therapies
05:48 - Other patients may be harmed by these same medications
06:55 - At this time there are no recommendations regarding discontinuing immunosuppressive therapies during the COVID-19 outbreak
07:44 - Dr. Kim has been recommending continuity of immunosuppressive therapies to his patients while we await more data
07:54 - Taking higher doses of prednisone is the worst thing you can do for your immune system and could increase morbidity and mortality
08:30 - Dr. Kim recommends not using any prednisone (or the lowest dose possible if it is absolutely necessary)
09:03 - Patients who have a lower baseline immune fitness may have an easier time with COVID-19 than a patient who has a higher baseline immune fitness
10:20 - Dr. Kim doesn’t want to discourage patients from pursuing vitamins or homeopathic prophylactics because he has no data to suggest they are harmful, and if nothing else, the placebo effect from them could be helpful
11:16 - There is some preliminary data to suggest that there may be some harm from NSAIDs and some benefit from anti-malarials (including Plaquenil)
12:40 - The data suggesting Plaquenil was beneficial is problematic because it excluded all patients who were unable to complete the course of medication for any reason - including those who became more sick or died
14:18 - Dr. Kim is very uncomfortable with the government suggestion that patients with COVID-19 should be treated with Plaquenil because the data to support that conclusion is not sufficient
16:13 - Dr. Kim recommends patients follow the general guidelines available to the public, but he also tells his patients to follow him on Twitter @alhkim so that they can have ready access to new information as it comes out
20:20 - As soon as the President of the US announced that Plaquenil could be used to treat COVID-19, patients would had already been taking Hydroxychloroquine immediately became afraid that they would not be able to access their medications
21:26 - None of the US distributors of hydroxychloroquine have any remaining stock, so the pills available at local pharmacies are all that there is
22:00 - The hope is that more manufacturers will begin producing hydroxychloroquine
22:36 - The VA system has restricted the use of hydroxychloroquine to COVID-19 patients ONLY, so AiArthritis patients who were taking it can no longer get it through the VA
22:44 - Hydroxychloroquine has a very long half-life and takes 30-40 days for your serum blood level to reduce by half and will take 6 months for it to be completely gone
23:08 - AiArthritis patients would probably be OK for a month or two in the event of a shortage, but after that they would really need access restored or a different medication if possible
24:04 - Patients may want to consider refilling all available medications in case of a hard quarantine
25:50 - Telemedicine appointments (to avoid in person visits) are more difficult for the physician because they cannot examine the patient and require the patient to be able to communicate problems and concerns verbally and accurately
30:00 - An increase in the accessibility of Telehealth appointments may allow patients to access clinics or hospitals or specialists they want to see regardless of their physical location
33:37 - Dr. Kim describes the American situation with testing for COVID-19 as frustrating and too late
34:18 - Dr. Kim estimates that the number of cases in the US is underreported by 5-10 times as a result of the lack of access to testing
35:04 - A private company is offering at-home COVID-19 testing for patients who qualify and can pay $130 for it
37:54 - Dr. Kim recommends self-quarantining if you have any symptoms of illness if you have no access to testing
38:10 - Immunosuppressed patients may shed more viral particles than patients in the general population, so AiArthritis patients may be more likely to spread the virus to others if they contract it and do not self-quarantine
38:22 - One study found that aerosolized COVID-19 may be able to last several days in the air after being expelled by a sick individual and up to 3 days on non-porous surfaces
43:12 - Allergies often have itchiness associated with them, so itching is pro
43:28 - A common cold is over quickly
43:39 - Flu and other respiratory viruses are difficult to distinguish from COVID-19
44:29 - Influenza tends to cause body aches
44:38 - A primary symptom of COVID-19 appears to be diarrhea, not necessarily fever
47:34 - Patients should seek medical care if they have respiratory distress when at rest or a fever that is unresponsive to medicine
51:14 - To avoid misinformation, follow Dr. Kim, the CDC, and other reputable sources for scientific information on social media
51:25 - Some stand-up comedians are hosting shows from their living rooms on social media, which may be a nice relief from social isolation
51:50 - Try to connect with other people over text, Facetime, Zoom, or social media so that you are isolated physically, but not emotionally
52:49 - Outlets for recreation and connection will be key for mental health during social isolation
53:02 - Prioritize outdoor activity as much as possible for wellness and to minimize joint pain and stiffness
55:50 - We hope after society returns to “normal” that people will understand that immunocompromised people are not only elderly
59:00 - You can find Matt Iseman on Twitter and Instagram @MattIseman
59:25 - For more information on COVID-19, you can join IFAA’s COVID-19 group on Facebook by connecting to our page @IFAiArthritis
1:00:03 - If you would like to take a seat at the table, visit us on the web at aiarthritis.org/podcast, on social medias @IfAiArthritis on all platforms, or email us @ podcast@aiarthritis.orgWednesday Mar 18, 2020
Wednesday Mar 18, 2020
Welcome to AiArthritis Voices 360. This episode join your host, Tiffany, as she and co-host Danielle Dass welcome Joe Coe from Creaky Joints / Global Health Living Foundation to discuss COVID-19 and the potential impact on the AiArthritis Community. This is the first episode in a breakout series of AiArthritis Voices 360 episodes on COVID-19 and what you can do to protect yourself during the pandemic. Are you among the people considered to be at an elevated risk during this pandemic? How can social distancing help you and your community? What other topics will the series cover in the coming episodes? Tune in the find out!
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).
Show Notes: Episode 19 – “COVID-19”
00:52 - Tiffany welcomes listeners and co-host, Danielle
02:13 - Danielle is a former teacher of AP Human Geography and has taught Population Studies, a topic which includes pandemics and epidemics
03:10 – Danielle is diagnosed with Rheumatoid Arthritis and Axial Spondyloarthritis, as well as an autoimmune liver disease.
03:20 - People who are immunosuppressed fall into the “high risk” category for COVID-19
03:44 - Tiffany and Danielle are joined by special guest, Joe Coe from Creaky Joints / Global Healthy Living Foundation
05:00 - Creaky Joints has been working to gather COVID-19 information and amplify the voices of the marginalized members of the chronic and invisible illness community
06:56 - No medical advice will be given in this episode.
07:02 - This is the first episode in a larger series on the COVID-19 pandemic
07:19 - The next episode will feature physicians and will address many common medical questions surrounding the virus
08:38 - Creaky Joints noticed early on that organizations were defining the at-risk populations in very broad strokes, which created a lot of confusion about who was actually at risk
09:36 - Creaky Joints has published a webpage called “Coronavirus Questions for Immunocompromised Patients and the Best Answers We Have Right Now.” This page is updated regularly and can be viewed at: creakyjoints.org/coronavirus
10:51 - Creaky Joints was told by several rheumatologists that patients should check with their doctor, but the impact of uncontrolled inflammation could be very detrimental so patients should not assume that discontinuing treatments is a good idea
12:44 - None of the research about coronavirus has been peer-reviewed, and all studies are very early
12:56 - Especially since scientists are studying some DMARDs as potential treatments for COVID-19, patients MUST speak with their doctor before making any decision about discontinuing their medications.
13:26 - There is a lot of misinformation being circulated on the internet, so our community needs reliable sources for information
14:20 - People may not interpret scientific studies correctly so word of mouth may not be very reliable
16:44 - A lot of the information being circulated is targeted for the general public and may not be the right advice for immunocompromised people
20:05 - AiArthritis patients who had teen or adult onset are very familiar with the concept of a “new normal,” and all of us understand social distancing already
20:40 - Some healthy people who compare COVID-19 to influenza don’t seem to understand that vulnerable members of the community are at risk from serious illness during any disease outbreak
22:03 - Negating an experience based on another bad experience undermines the work that all of us should be doing to listen to the voices of people impacted by epidemic diseases
22:19 - Responses to epidemics and pandemics should be centered on the voices of the people most impacted by them
23:40 - A pandemic is a disease that has spread across multiple countries and impacts a large percentage of the population
24:20 - Epidemics spread through contagion diffusion, which means everyone who contracts the disease is physically located in the same geographic area as all the rest of the patients with the disease
24:50 - Network diffusion is when the disease spreads along a network of individuals like when a disease spreads through a network of airports
28:07 - “Flattening of the curve” refers to slowing the spread of the virus
30:33 - Slowing the spread of the disease will prevent hospitals from being overburdened
30:49 - Social distancing protects individuals, but it also saves lives by protecting hospitals’ ability to respond to patients with the serious version of the virus
31:43 - Idris Elba tested positive for coronavirus despite having no symptoms
32:36 - Tiffany has been experiencing concerning symptoms, but she wasn’t able to be tested for COVID-19 due to testing shortages
34:25 - Nobody will know the mortality rate for COVID-19 until it has run its course
35:30 - COVID-19 is significantly more deadly than the seasonal flu
36:00 - Creaky Joints interviewed a woman in Texas who had exposure to people with COVID-19 but wasn’t able to be tested for the disease
38:00 - The situation with COVID-19 indicates that our society really needs to reevaluate our priorities and put an emphasis on public health and the value of medically fragile lives
39:30 - Our society needs to believe in science and trust journalists to combat the widespread dissemination of misinformation
41:14 - Autoimmune patients may experience severe morbidity or a loss of efficacy of treatments as the result of serious viral infection
42:12 - Patient advocates have been using #highriskCOVID19 on social media to raise awareness of people living with invisible diseases who are at elevated risk
45:05 - It has always been the policy of Global Healthy Living Foundation to practice social distancing whenever an individual is sick to reduce the spread of infections
46:20 - Society is currently having to grapple with the impacts of social isolation in a way that the chronic disease community already has
47:06 - Social distancing is an opportunity to build bridges with people who don’t understand the social isolation that can be a part of AiArthritis diseases
48:03 - Services that help support social distancing may be overwhelmed right now and unavailable to patients who normally depend on them, and creative solutions may be helpful
50:33 - Deep breathing exercises, movement, hydration, and avoiding smoking can help make your lungs be in the best shape possible in case you contract the disease
51:30 - Making mental health a priority and seeking needed support is also very important
52:30 - Everyone should be respectful of other people’s fears
53:25 - Creaky Joints has a webpage for coronavirus information (creakyjoints.org/coronavirus), or patients can receive social support from their Facebook page (@creakyjoints), instagram (@creaky_joints), or twitter (@CreakyJoints)
55:30 - IFAA is creating a group for COVID-19 information on Facebook (check the IFAA FB page @IFAiArthritis to access it) and launching AiArthritisVoices.org where patients can participate in an anonymous forum
56:22 - IFAA will make the AiArthritisVoices 360 platform available to all non-profits or rheumatologists who want to disseminate important information about COVID-19
57:28 - IFAA and CreakyJoints have teamed up with a number of non-profits and rheumatologists to support rheum-covid.org to create a registry for research into rheumatology and COVID-19
58:33 - Tiffany thanks Joe for participating in today’s episode
59:22 - If you would like to take a seat at the table, visit us on the web at aiarthritis.org/podcast, on social medias @IfAiArthritis on all platforms, or email us @ podcast@aiarthritis.org