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Tociluzumab/Actemra

My rheumatologist wanted to start Actemra infusions. She had other pts on it and thought I was a good fit.
However we found that NONE is available for us autoimmune pts. It has all been diverted for use in severely ill covid pts. A year ago when I couldn't get hydroxychloroquine for the same reason, it was a bit more understandable because there was no vaccine. Now, however, the people sick enough with Covid to need Actemra, are mostly those who refused vaccine and now sadly pay the price for their bad decisions. Their choice. I had no choices, nor ways to prevent my autoimmune diseases. But I (and many like me) have to pay the price for vaccine refusers poor decisions. FAIR?

  1. A client of mine who is on Actemra was just told by her Rheumatologist that she would not be able to get her next infusion because they are all being reserved for severely ill COVID patients. She was very upset as this drug was actually working well for her. I don't understand how there can not be enough for both kinds of patients. It seems unethical to take away the drug for those currently using it. Is there some kind of scarcity here?
    As far as your question about fairness goes --It seems what you are really asking is "When medical resources are scarce who deserves to receive them first?" My guess is the ones most in danger of death should get priority, regardless of whether their illness is 'their fault' or not.


    1. I found an article about this situation with an email for contact in these cases. Perhaps this link will be helpful. As a side note, this shortage has been building all year so hopefully, they really do have a handle on it. I hope so anyway.


      https://www.healio.com/news/rheumatology/20210818/global-tocilizumab-shortage-intensifies-after-demand-spikes-to-treat-delta-variant?gclid=Cj0KCQjwnJaKBhDgARIsAHmvz6f1PMg3LM2bOYjgIdZ3fe6IU-RmUDvDCHZo03zYQulD5defS2J78hAaAo9lEALw_wcB


    2. Gosh, that is horrible! I have heard of this happening. I pray people with rheumatoid arthritis who were on this medication before can have equal rights here, because as we know RA not being treated can be just as bad for an individual. -Effie, Team Member

  2. Also, John Cush of Rheumnowlive.com posted the communication from Gene tech concerning this situation. Bottom line, I wouldn't hold my breath.

    1. , thanks for sharing this information! Best, Erin, RheumatoidArthritis.net Team Member.

  3. Hi all. Just wanted to note that it appears the shortage for Actemra is for the infusion. For those who may be able to take the autoinject subcutaneous form, it seems to be available. This article notes that "So far, the shortage has affected only the tocilizumab IV dosage forms, 80 mg/4 mL, 200 mg/10 mL and 400 mg/20 mL in single-use vials. The subcutaneously administered versions—the prefilled syringe and ACTPen autoinjector—have remained in adequate supply:" https://www.pharmacypracticenews.com/Online-First/Article/09-21/IV-Tocilizumab-Shortage-Raises-Ethical-Issues-Supply-Challenges-for-Health-Systems-/64646. This article is a couple of weeks old, but I did not find anything to indicate that it is no longer accurate. Of course, one would have to check with a doctor to see if this is a viable option. Best, Richard (RheumatoidArthritis.net Team)

    1. thanks for your input and the article link. Very interesting information and great knowledge to know. Just Keep Swimming...Lynn Marie, "RheumatoidArthritis.net Team Member"

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