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).

 

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