Making Informed Decisions in Unprecedented Times
Highlighting vaccination choices that result in rheumatology patients losing access to treatments
AiArthritis Voices 360 Full Episode 67
Air Date: October 31, 2021
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).
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 also read our Press Release about the Actemra shortage and share with others so they can make fully informed decisions about vaccinations!
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?
Now, 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 Tiffany, Katie, Deb, and all the other recurring Voices 360 co-hosts to continue this conversation inside our coordinating AiArthritis Voices online community - where patients unite with others around the world to talk, learn, and connect.
LISTEN TO THE EPISODE THEN BE SURE TO TAKE A SEAT AT THE TABLE BY JOINING THE CONVERSATION!
(Scroll down the page to learn how!)
DOWNLOAD THE PRESS RELEASE AND VIEW THE FULL ARTICLE: Rheumatology patients forced to sacrifice their treatments to increase availability for hospitalized COVID-19 patients
Pull up your seat at the table
Now it's YOUR TURN to join the conversation!
What do you think about this episode?
We want to know what you think! By continuing the conversation with your opinions and perspectives - we all get a better understanding of the problems facing our community. Better yet, through these conversations we can start working and developing solutions.
We mean it when say 360. Not only do we want your input anytime and anywhere, but we also are eager to see where the conversation will take us. So please, "pull up a seat at the table" and let's start talking!
Email us at podcast@aiarthritis.org, message us on social media (find us by searching for @IFAiArthritis)
Continue the conversation in our own AiArthritis Voices 360 Talk Show Group!
Pull up a seat and join the conversation on the topic from today and past episodes. You may even get an opportunity to talk directly with the co-hosts and any episode guests!
The
AiArthritis Voices Program
Our AiArthritis Voices 360 Talk Show is just a piece of larger program - the AiArthritis Voices Program.
AiArthritis Voices is our program where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives.
If you want to get more involved, and see more of the opportunities we have for you (and all stakeholders) please check out the
AiArthritis Voices Program. Unite with others around the world to talk, learn, and connect.
Show Notes:
Episode 67: Making Informed Decisions in Unprecedented Times
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.
Your Co-Hosts & Guests: Who is at the table this episode?
Tiffany Westrich-Robertson
Tiffany is the CEO at International Foundation for AiArthritis and uses her professional expertise in mind-mapping and problem solving to help others, like her, who live with AiArthritis diseases work in unison to identify and solve unresolved community issues. For the last several years, she has continued her education in research, including becoming a professional focus group moderator, and translated this experience at our organization to develop award-winning, innovative projects that are taking patient engagement to next levels.
Tiffany has served on several advisory boards, including those to advance patient voices in policy, clinical trials, and precision medicine. In addition to reviewing grants at PCORI and for the Department of Defense, she was the sole patient grant reviewer for the National Institute of Arthritis and Musculoskeletal and Skin diseases from 2015-2018. She currently participates as a Patient Research Partner for OMERACT (Outcome Measures in Rheumatology), co-leads our organizations' international effort to advance patient voices in rheumatology research (the ACTion Council) and has dedicated her professional career to developing other patients to utilize their voices to impact the future of millions.
Deb Constien
Deb has been living with Rheumatoid Arthritis for three decades and while she has experienced disability from it, she never lets her disease dominate how powerful her voice can be.
She has been a key Representative (high level volunteer) for our organization for several years and often takes a leadership role in many programs and mission initiatives, including attending meetings as the voice of the organization. She is also a Platinum Ambassador at the Arthritis Foundation, as well as various other nonprofits, and has formerly and currently used her voice as a Patient Research Partner (Wisconsin Research and Education Network (WREN), OMERACT, Arthritis Power through CreakyJoints and more). She has represented her state of Wisconsin on Capitol Hill and at a local multiples times, and most recently was a key player in helping to pass step therapy legislation in her state.
Katie Simons
Diagnosed with Juvenile Rheumatoid Arthritis (now called Juvenile Idiopathic Arthritis) at age 12 and recently found a new home at AiArthritis as Senior Program & Communications Manager. She earned a Masters of Public Administration, nonprofit management concentration, from Oakland University in Rochester, Michigan.
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