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COVID-19 Science Twitter List

March 2, 2020

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…]

Filed Under: Infections Tagged With: coronavirus, COVID-19, pandemic influenza

Will the COVID-19 vaccines work in people with immune suppression?

September 21, 2021

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!)

Who was included?

Courtesy Alex Mecl

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.

What was measured?

Researchers examined Anti–SARS-CoV-2 spike (S) IgG+ binding as well as other specialized tests of humoral immunity

What were the results?

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.

Why is this important?

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.

Filed Under: COVID Tagged With: research, vaccination, vaccine

CT Department of Health Vaccine Update

September 2, 2021

This information is from August 18, 2021 and may be changed in the future with updates in the science. 

COVID-19 Vaccines: On Friday, ACIP recommended that people who are moderately to severelylogo CT department of health immunocompromised could receive a third dose of mRNA COVID-19 vaccine.  

  • Evidence indicates that people with severe immunocompromise don’t always build the same level of immunity after two doses of mRNA vaccination as people without immunocompromise, and may benefit from an additional dose of COVID-19 vaccine. 
  • The third dose should be administered at least four weeks after the second dose of the same mRNA vaccine. 
  • Healthcare providers should talk with patients who are immunocompromised about whether a third dose is appropriate for them. Patients included in ACIP’s recommendations can get a third dose of mRNA vaccine. See FAQs under the recommendations for more information.
  • DPH encourages all providers to reach out to patients who may meet the criteria for an additional dose of a COVID-19 vaccine to support and encourage them to get the additional dose. 
  • FDA has amended both the Pfizer-BioNTech EUA and the Moderna EUA 

Middletown Health Department at Cross St. Church

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. 
 
As always, check with the physician that knows you best if you have any questions about whether you should get the vaccine. 

Filed Under: Uncategorized

Information About Boosters

September 2, 2021

This is published on August 14 and may be superseded by later information

This is to let you know the latest and is not medical advice — think of it more like a news bulletin. Always check with your health provider if you have any concerns or special issues. 
 
Yesterday, the CDC announced that a third shot, you can think of it as a booster, was appropriate for immunocompromised people. These are the conditions they consider under “immunocompromised”
 
 people who have:
 
    *Been receiving active cancer treatment for tumors or cancers of the blood
    *Received an organ transplant and are taking medicine to suppress the immune system
    *Received a stem cell transplant within the last 2 years or are taking medicine to suppress the immune system
    *Moderate or severe primary immunodeficiency (such as DiGeorge syndrome, Wiskott-Aldrich syndrome)
    *Advanced or untreated HIV infection
    *Active treatment with high-dose corticosteroids or other drugs that may suppress your immune response
 
People should talk to their healthcare provider about their medical condition, and whether getting an additional dose is appropriate for them.

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.  

I am stunned that “primary immunodeficiency” made the list! Hooray! 
 
If you had a J&J vaccine, the CDC and FDA need to collect more data about the safety of a second shot. For Pfizer and Moderna, third shot is safe.  The CDC recommends that you ask for the same injection as your original 2, but if it is not available, it is fine to take the other mRNA shot. So, if your first 2 were Pfizer, ask for Pfizer, but take Moderna if there is no Pfizer available (and vice-versa).
 
Most physician’s offices do not have the storage space, and are not giving the volume of shots per day (the vaccines come in multi=dose vials) to justify distributing them to each primary care practice. I am expecting a notice from the Department of Public Health as to how they are going to handle this in CT — whether they will ramp up the mass vaccination sites again, or punt to the pharmacies. On the national news this evening, they said CVS was already taking appointments and administering third doses. 
 
In the meantime, if you are anxious and want to get a third shot ASAP, call or go online to CVS and make an appointment there (after checking with your healthcare provider). 
 
 

CDC Information

Here is the CDC information
https://www.cdc.gov/coronavirus/2019-ncov/vaccines/recommendations/immuno.html
 
https://www.cdc.gov/media/releases/2021/s0813-additional-mRNA-mrna-dose.html
 
Please be careful about what you might read online from other non-official sources. There is a tremendous amount of misinformation out there

Filed Under: Uncategorized

Co-Pay Accumulator is Signed!

September 2, 2021

CT State CapitolWe 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. 

What is a Co-Pay Accumulator?

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. 

 

 

. 

Filed Under: Uncategorized

Get the CT COVID Phone App

January 4, 2021

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.

[Read more…]

Filed Under: COVID Tagged With: Connecticut, COVID Alert CT, COVID-19, Phone app

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Save the Date!

Next CT Zebras Meeting – Virtual 
We have taken the summer off, and will let you know when our first fall meeting is. We usually meet just after dinner.

Please join us! Our meetings are open to people who are living with primary immune deficiency, are in the process of diagnosis, and the people who love them.

Click here  to sign up and we’ll let you know as soon as we have a date.

 

CT Rare Action Network (CT-RAN)              During the legislative session, advocates from many disease groups meet to discuss legislative priorities and make sure they align. Check back to learn when the meetings will start this fall. All are welcome!

 

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  • Will the COVID-19 vaccines work in people with immune suppression?
  • CT Department of Health Vaccine Update
  • Information About Boosters
  • Co-Pay Accumulator is Signed!
  • Get the CT COVID Phone App

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