AiArthritis Alerted to Rheumatology Patients Being Forced to Sacrifice Their Treatments Due to COVID-19
Many AiArthritis patients use biologic DMARDs to manage their condition, but responses vary per individual. The right therapy can be life-changing; disrupting continuity of care is strongly discouraged, as it can result in compromised quality of life and comorbid diseases. To accommodate hospital inventory needs for medication to treat severe COVID cases, chronically ill rheumatology patients worldwide are forced off their treatments... and they are angry.
St. Louis, MO, October 28, 2021 --(PR.com)-- Rheumatology patients forced to sacrifice their treatments to increase availability for hospitalized patients with severe COVID-19.(1)
Autoimmune and Autoinflammatory Diseases that include inflammatory arthritis as a significant clinical component (AiArthritis Diseases) are full-body conditions affecting joints, tissues and organs. Given these diseases are unique per individual, finding the right treatment can take months or years.
Most patients are prescribed disease-modifying antirheumatic drugs (DMARDs), including biologics to manage their condition, but there’s no one-size-fits-all therapy, and responses vary per individual. (2) The right therapy can be life-changing; disrupting continuity of care is strongly discouraged as it can result in compromised quality of life, loss of employment, and comorbid diseases. To accommodate hospital inventory needs for medication that treats severe COVID cases, chronically ill rheumatology patients worldwide are forced off their treatments... and they are angry.
Erin (USA), diagnosed age 14 with juvenile Psoriatic Arthritis, says, “Throughout the pandemic, the public was asked to protect the at-risk population by washing their hands, socially distancing, wearing a mask, and getting vaccinated. Now the ‘at-risk’ people must give up more? Most frustrating, it's to protect some who didn’t do their part by choosing to be vaccinated.”
Bottom line: AiArthritis believes this situation was, and still can be, preventable. If more people choose vaccination, hospitalization rates would decrease, and rheumatology patients may not be forced to sacrifice the treatments that work best for them.
Tocilizumab (Actemra) IV (infusion form) – developed for inflammatory rheumatic diseases – is being used to treat critically ill, hospitalized COVID patients. (4) Other drugs may be available soon, but current options are limited. Meanwhile, rheumatology patients are experiencing unnecessary high anxiety, fear and uncertainty.
“Often patients on tocilizumab have already failed several medications, so we are careful to determine who can safely switch. Ideally, supply would match demand and we wouldn’t need to switch away from administration route (in this case tocilizumab infusion to injection) or mechanism (what the drug targets in the body),” explains Dr. Christie Bartels, Rheumatologist and Division Head of the University of Wisconsin School of Medicine and Public Health.
The American College of Rheumatology recommends switching to tocilizumab injections when able,(5) but some patients have tried and failed that route. However, several patients around the world have already been notified the injection forms are now being pulled, too.
“Before tocilizumab IV, I wasn’t able to function. My parents had to move in to help me with my own family, as I was unable to hold or feed my baby,” Stacy (USA), Rheumatoid Arthritis, tells AiArthritis. Not comfortable giving herself injections, she adds, “I’m terrified of starting over with a new treatment after 8 years of success.”
Sarah (USA), Rheumatoid Arthritis, explains, “On weekly injections of tocilizumab, I felt terrible after 5 days. So, we moved to infusions and felt great for about 27 days. I could travel, get house projects completed, and help my dad move items to storage. I was hopeful the infusion would allow me to fully function in society again, potentially keeping me off disability. Now what?”
Sarah C. (New Zealand), Rheumatoid Arthritis, also successful on tocilizumab IV for 8 years, adds, “After failing other drugs, this was a miracle! Apart from some fatigue and mild pain, I could function well.” In New Zealand, switching to the injection form isn’t an option, so Sarah, a teacher, will start a new drug entirely - in pill form, taken daily.(6) “I’m hopeful it works. If not, I don’t know what to do. I have no more sick days left.”
Deb (USA), initially diagnosed with Juvenile Idiopathic Arthritis, has failed 10 biologics, and was hopeful to start tocilizumab IV after the injectable was minimally effective. “I had one infusion before the shortage. For that month it was easier to get out of bed and I got more done around the house without my hands flaring. I’ve switched back to the injections and already needed days off to rest in between activities.” Her husband administers her injections, as Deb’s fingers and thumbs are disfigured from long-term disease damage.
With COVID cases worldwide rising(7) and those unvaccinated representing the highest percentage of hospitalizations,(8) these patients – and thousands like them – may have to continue dealing with unnecessary pain, anxiety, and risk long term health challenges. Deb adds, “I don’t think the public is aware this is a problem. Now that they do, I want to believe some currently not vaccinated may choose differently. There can be enough medication to go around if we come together and look out for one another.”
This publication is intended to provide another layer of education for those still considering whether to be vaccinated so they can effectively make an informed decision. If you are not yet vaccinated and are considering it, please talk to your doctor to determine if vaccination is right for you. Learn more about this issue in the full article at www.AiArthritis.org/shortage.
References
1. https://www.gene.com/media/statements/ps_081621
2. https://arthritis-research.biomedcentral.com/articles/10.1186/s13075-017-1445-3
3. https://www.cdc.gov/mmwr/volumes/70/wr/mm7043e1.htm
4. https://www.fda.gov/news-events/press-announcements/coronavirus-covid-19-update-fda-authorizes-drug-treatment-covid-19
5. https://www.rheumatology.org/Portals/0/Files/Guiding-Principles-Scarce-Resource-Allocation-IL-6-Inhibition.pdf
6. https://pharmac.govt.nz/medicine-funding-and-supply/medicine-notices/tocilizumab/
7. https://www.worldometers.info/coronavirus/
8. https://www.cdc.gov/coronavirus/2019-ncov/covid-data/covidview/index.html
Autoimmune and Autoinflammatory Diseases that include inflammatory arthritis as a significant clinical component (AiArthritis Diseases) are full-body conditions affecting joints, tissues and organs. Given these diseases are unique per individual, finding the right treatment can take months or years.
Most patients are prescribed disease-modifying antirheumatic drugs (DMARDs), including biologics to manage their condition, but there’s no one-size-fits-all therapy, and responses vary per individual. (2) The right therapy can be life-changing; disrupting continuity of care is strongly discouraged as it can result in compromised quality of life, loss of employment, and comorbid diseases. To accommodate hospital inventory needs for medication that treats severe COVID cases, chronically ill rheumatology patients worldwide are forced off their treatments... and they are angry.
Erin (USA), diagnosed age 14 with juvenile Psoriatic Arthritis, says, “Throughout the pandemic, the public was asked to protect the at-risk population by washing their hands, socially distancing, wearing a mask, and getting vaccinated. Now the ‘at-risk’ people must give up more? Most frustrating, it's to protect some who didn’t do their part by choosing to be vaccinated.”
Bottom line: AiArthritis believes this situation was, and still can be, preventable. If more people choose vaccination, hospitalization rates would decrease, and rheumatology patients may not be forced to sacrifice the treatments that work best for them.
Tocilizumab (Actemra) IV (infusion form) – developed for inflammatory rheumatic diseases – is being used to treat critically ill, hospitalized COVID patients. (4) Other drugs may be available soon, but current options are limited. Meanwhile, rheumatology patients are experiencing unnecessary high anxiety, fear and uncertainty.
“Often patients on tocilizumab have already failed several medications, so we are careful to determine who can safely switch. Ideally, supply would match demand and we wouldn’t need to switch away from administration route (in this case tocilizumab infusion to injection) or mechanism (what the drug targets in the body),” explains Dr. Christie Bartels, Rheumatologist and Division Head of the University of Wisconsin School of Medicine and Public Health.
The American College of Rheumatology recommends switching to tocilizumab injections when able,(5) but some patients have tried and failed that route. However, several patients around the world have already been notified the injection forms are now being pulled, too.
“Before tocilizumab IV, I wasn’t able to function. My parents had to move in to help me with my own family, as I was unable to hold or feed my baby,” Stacy (USA), Rheumatoid Arthritis, tells AiArthritis. Not comfortable giving herself injections, she adds, “I’m terrified of starting over with a new treatment after 8 years of success.”
Sarah (USA), Rheumatoid Arthritis, explains, “On weekly injections of tocilizumab, I felt terrible after 5 days. So, we moved to infusions and felt great for about 27 days. I could travel, get house projects completed, and help my dad move items to storage. I was hopeful the infusion would allow me to fully function in society again, potentially keeping me off disability. Now what?”
Sarah C. (New Zealand), Rheumatoid Arthritis, also successful on tocilizumab IV for 8 years, adds, “After failing other drugs, this was a miracle! Apart from some fatigue and mild pain, I could function well.” In New Zealand, switching to the injection form isn’t an option, so Sarah, a teacher, will start a new drug entirely - in pill form, taken daily.(6) “I’m hopeful it works. If not, I don’t know what to do. I have no more sick days left.”
Deb (USA), initially diagnosed with Juvenile Idiopathic Arthritis, has failed 10 biologics, and was hopeful to start tocilizumab IV after the injectable was minimally effective. “I had one infusion before the shortage. For that month it was easier to get out of bed and I got more done around the house without my hands flaring. I’ve switched back to the injections and already needed days off to rest in between activities.” Her husband administers her injections, as Deb’s fingers and thumbs are disfigured from long-term disease damage.
With COVID cases worldwide rising(7) and those unvaccinated representing the highest percentage of hospitalizations,(8) these patients – and thousands like them – may have to continue dealing with unnecessary pain, anxiety, and risk long term health challenges. Deb adds, “I don’t think the public is aware this is a problem. Now that they do, I want to believe some currently not vaccinated may choose differently. There can be enough medication to go around if we come together and look out for one another.”
This publication is intended to provide another layer of education for those still considering whether to be vaccinated so they can effectively make an informed decision. If you are not yet vaccinated and are considering it, please talk to your doctor to determine if vaccination is right for you. Learn more about this issue in the full article at www.AiArthritis.org/shortage.
References
1. https://www.gene.com/media/statements/ps_081621
2. https://arthritis-research.biomedcentral.com/articles/10.1186/s13075-017-1445-3
3. https://www.cdc.gov/mmwr/volumes/70/wr/mm7043e1.htm
4. https://www.fda.gov/news-events/press-announcements/coronavirus-covid-19-update-fda-authorizes-drug-treatment-covid-19
5. https://www.rheumatology.org/Portals/0/Files/Guiding-Principles-Scarce-Resource-Allocation-IL-6-Inhibition.pdf
6. https://pharmac.govt.nz/medicine-funding-and-supply/medicine-notices/tocilizumab/
7. https://www.worldometers.info/coronavirus/
8. https://www.cdc.gov/coronavirus/2019-ncov/covid-data/covidview/index.html
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AiArthritis
Katie Simons
877-609-4226
www.aiarthritis.org
Katie Simons
877-609-4226
www.aiarthritis.org
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