For persons with primary immunodeficiency and those who love them
I became increasingly frustrated by the garbage I found on social media relating to the new coronavirus, COVID-19. So, I created my own Twitter list that includes only scientists and science journalists who know what they are talking about.
I cannot guarantee there will be no objectionable language, political statements or cat pictures. If you think about the pressure these people are working under, I hope you’ll agree it is understandable.
[Read more…]A new study, published in the Annals of Internal Medicine, reports how people with immune suppression respond to the COVID-19 vaccines. Since it is behind a paywall, here is an article summarizing the results from the St. Louis Post-Dispatch. (Thanks, Shiakoda!)
The study examined 133 people who were eligible for early immunization, which included those age 65 and older and hospital employees with chronic inflammatory disease. Researchers matched them with 53 other hospital employees to compare their responses to vaccination.
Researchers examined Anti–SARS-CoV-2 spike (S) IgG+ binding as well as other specialized tests of humoral immunity
Patients taking Prednisone and B-cell depleting therapy (such as IV drugs for rheumatoid arthritis, inflammatory bowel disease) had less of a response to the vaccine than those with autoimmune disease not taking those drugs. 10% had no response at all. The remaining 90% ranged from the same as the people without autoimmune disease to as low as one-quarter to one-third of the “normal” response.
While people with primary immune deficiency were not included in this study, at least 35% of adults with PI also have an autoimmune condition as part of their immune system dysfunction. While scientists have not yet determined the measures of immune response that will provide protection, it is encouraging to see that 90% of this study group had some response.
The authors note that a study (link to full text) published in the New England Journal of Medicine looked at post-transplant recipients’ response to a third “booster” vaccine dose. The third dose produced a stronger immune response as measured by various blood parameters compared with patients who received a placebo third injection.
COVID-19 Vaccines: On Friday, ACIP recommended that people who are moderately to severely
immunocompromised could receive a third dose of mRNA COVID-19 vaccine.
I got my third shot of the Pfizer-BioNTech vaccine this evening. The Cross Street Church has a vaccine clinic every Wednesday evening from 4p to 7p, administered by the Middletown Health Department. Not only are they staffed with nurses who administer the vaccine and monitor afterward, but they have gift cards as a reward for getting your shot! Send any friends who are not yet vaccinated! It is a well-run center that is not too busy so that you cannot maintain proper distancing. When you go to the place you choose for the third shot, you’ll need to tell the person signing you in why you qualify. You do not need to provide any medical record or physician note.
Here is the CDC information
We Did It!!On June 2, 2021, Governor Ned Lamont signed SB 1003, An Act Prohibiting Certain Health Carriers and Pharmacy Benefits Managers From Employing Copay Accumulator Programs, effective January 1, 2022
Those of us in the rare disease community in CT have been working on this bill for four years, and I will admit I had tears rolling down my cheeks as I watched the vote on CT-N on my cable. A legislator stood up and told the story of a woman she represented who required regular infusions to treat pulmonary hypertension that were outrageously expensive, as most of our life-sustaining medications are.
If a co-pay accumulator is in place, any assistance a patient receives to help cover the cost of the deductible or out-of-pocket costs for medications (typically infusions) must now be applied to the patient (parent)’s financial responsibility.
Thank you, Connecticut legislators, for listening to our stories and learning how important this support is to us. Your work makes us the 9th state to protect residents with rare, life-threatening conditions.
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Connecticut has a phone app to help with contact tracing for COVID-19 infections in the state. Go to Google Play or enable the app in Apple settings.
The app uses location technology in your phone and all the phones around you to build a web of phones you’ve been near. Then, if someone with the app tests positive, they can notify others by clicking on “positive” in the app. That will send out an alert through the technology that determines what phones were within six feet the phone of the positive person for 15 minutes or more.
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