From uncertain vaccine recommendations to defunding oversight of group homes for the disabled—and some sudden policy reversals in the face of pushback—it was a busy week.
Where to begin? Thanks for the continuing update on this administration’s nightmare approach to Public Health. Glad to finally see some reference to the devastating broad and deep impact on disabled/chronically ill/ immune compromised Americans.
I can tell you as a disabled (since I was in my 20’s) highly immune compromised American who Chairs my city Commission on Disability, we are validly petrified by Trump’s new “Cabinet of Horrors” in our public health agencies. NIH’s Dr. Jay Bhattacharya supported in the Great Barrington Declaration herd immunity (vs. vaccines and other safety practices), but spoke of isolating and quarantining people like myself and those I represent. Eugenics, next?? Kennedy with his latest statements on Americans with autism (also a disability) and a desire to digs into their PRIVATE personal health data wreaks of 1930’s Nazi Germany (not an over-statement).
There is a very big difference between accumulating data/research scientifically BY MEDICAL SCIENTISTS in order to protect their rights and health (much needed), and “tagging” them to remove them from functioning society.
And the possible removal of updated COVID vaccines access and important info for us, society, and our doctors is mortifying. Especially, in the face of studies concerned with the addition of Long COVID adding to increasing disabled populations. And, YES, what about CHILDREN for all the valid reasons Jeremy stated??!
It is different when the "rallying" comes from the ones who are most vulnerable and marginalized. I was asked to speak at the Social Security Indivisible-Hands Off rally in Springfield that Rachel Maddow showcased (which I did). I stood in the pouring down rain for hours at an April 5 Indivisible rally. I sign petitions, make phone calls, speak publicly pretty regularly, As chair of my Commission on Disability we are working with our mayor for an independent budget so we can help our disabled residents who will lose Medicaid benefits, possibly Medicare, and/or SSD. I'm also trying to get support for accessible housing so disabled folks DON'T HAVE TO GO INTO facility "homes" when independence is key to our physical, financial, and psyche health.. We need more than "pushback" and long legal battles. We enter 2025 already life-long fatigued by illnesses running amok and a healthcare system that actually neglects or impedes us, and a society that discriminates. I spent time in an ER last week too, not because it is my paid profession (demanding as yours is), but because I had a bad fall hitting my head after experiencing an exacerbation of Progressive MS (likely due to removal of my DMD), angina and hypertension (once again uncontrolled despite 4 meds for it), 2 past TIA's and NEVER SAW A DOCTOR, no neuro exam. Meanwhile, can't get a cardiologist available till September in Western MA. Give us a microphone so we can tell the story of the patient and their families. During Apartheid there was a Disabled Civil Rights group that emerged in SA. Their mantra was "Nothing For Us Without Us."
With respect Dr Faust please explain how "at risk" people would be defined for a vaccine. I guess we are speaking about the Covid 19 shot in this instance. For me when the recommendations become parsed with ifs/buts etc then people will tune out. What is defined as "at risk"? Maybe someone in their 40s takes BP med so they consider themselves high risk while someone else taking a cholesterol med at 50 and says no big deal I'm not getting a shot. Sure you can say age but beyond that how is it determined? People "lied" before when putting in to get vaxed & would embellish just to get in for a booster. Does each person have to ask their doctor if these new guidelines start up? I feel that you can say particular ones should get another Covid shot BUT also say anyone who wants one can still get one as well INCLUDING kids. My sense is that it will make it more difficult to be left more open to anyone who wants a vax or booster with these potential new guidelines.
That is a great question. I *believe* ACIP is going to define this better as well. The list of conditions that has been considered high risk was fairly lengthy and inclusive, and has not been updated in what I call the "immune era" (that is, in which >99% of people are either vaccinated, have recovered from prior infection, or both). In my view, the list could reasonably be narrowed, but we'd actually need some more recent data on this.
In addition, this is where nuance matters. For example, if you take a biologic (like a monoclonal antibody) for something like Crohn's or Rheumatoid Arthritis, that might be high risk because these agents cause a degree of immunecompromise. But what if you took it for 3 years but you and your doctor decided that you could stop it, and so you've been off that drug for a few months? When does your risk return to normal? Nobody knows that now.
I also think that there are degrees of illness. Take someone with very well controlled diabetes and another whose diabetes is not well controlled. One might be high risk and the other not. But where's the line?
That's why I think doctors and patients need to come together and decide--and this is key---have the freedom to decide.
This argument makes sense for vaccines like COVID but not for many other vaccines (like MMR), where a very high rate of uptake in the community can actually eliminate the pathogen.
I agree with you that people will sometimes not be entirely truthful in pursuit of a treatment that they want. Vaccine recommendations can't be built around these folks.
Your question of how the vaccines will be administered if the recs change is a good one. I don't know whether the pharmacies will continue to provide them, but I suspect that they still will. For example, you can get a shingles vaccine at CVS or Walgreens, if you qualify; what I don't know is how they'll handle people who want those shots who fall outside the recs. It could come down to how the recs are written. If they say some "should" and others "may" receive the shots, I think it'll be basically a non-issue. The question is what happens if they do not say that standard risk people "may" receive the shots. In that case, I imagine it'll be harder to get (i.e. may have to go to your doctor).
My family clinic doesn't carry the Covid vax. Only the pharmacies carry it. I think maybe because of refrigeration space. So.....if it restricts for more or less "average" people then it would likely be a problem in this area. I would guess other areas too. Then you get into the underserved areas and rural areas a whole other issue too. Will they get access to the shots especially under Jr.
Thanks for the lengthily reply Dr F. I just remember from when the CDC tried to break down who should and shouldn't get vaxed and I was screaming going "Just let anyone get a booster if they want"!!! How many will get their doc's advice- some will sure but many don't have the time to do through all the checks of should I get the booster. There were arguments like Dr Hotez/Fauci said just let whoever wants a shot get the booster while others like Dr Offitt/Gounder, etc said no make it more nuanced. Many don't have the time to be checking with their clinics, etc or going through a list. Then add in the ones heading HHS now they won't push any more Covid vaxes, how much will the pharma ones manufacture this time- they don't want a lot thrown away, And you mention other vaxes might not work with the same guidelines- well people will just say wait why are you giving out different guidance on these vaxes? Just lots of concerns.
Your final sentences there will make a difference. Will it say "may" or "should". And then dealing with availability or insurance the way things are phrased will make a big difference. The way Jr handled the measles outbreak I don't have a lot of confidence for the fall with especially flu and Covid vaxes!!!
As someone who can only take the novavax and is at high risk this is very concerning! I was due for my six month booster in May. In the past I have had no issue in finding one. I have had 3 previous ones. This spring I had to get mine early because there were only two doses in my area left requiring me to push it up by a month. Without my twice a year novavax I will no longer feel comfortable moving out in the world. I don’t think many understand that for some the mRNA isn’t an option.
I echo your observation that public outcry led to rapid reversal of 2 “oops” declarations re an autism registry & defunding for Women’s health.. & agree that this underlies the sentiment that our voices still matter.
Where to begin? Thanks for the continuing update on this administration’s nightmare approach to Public Health. Glad to finally see some reference to the devastating broad and deep impact on disabled/chronically ill/ immune compromised Americans.
I can tell you as a disabled (since I was in my 20’s) highly immune compromised American who Chairs my city Commission on Disability, we are validly petrified by Trump’s new “Cabinet of Horrors” in our public health agencies. NIH’s Dr. Jay Bhattacharya supported in the Great Barrington Declaration herd immunity (vs. vaccines and other safety practices), but spoke of isolating and quarantining people like myself and those I represent. Eugenics, next?? Kennedy with his latest statements on Americans with autism (also a disability) and a desire to digs into their PRIVATE personal health data wreaks of 1930’s Nazi Germany (not an over-statement).
There is a very big difference between accumulating data/research scientifically BY MEDICAL SCIENTISTS in order to protect their rights and health (much needed), and “tagging” them to remove them from functioning society.
And the possible removal of updated COVID vaccines access and important info for us, society, and our doctors is mortifying. Especially, in the face of studies concerned with the addition of Long COVID adding to increasing disabled populations. And, YES, what about CHILDREN for all the valid reasons Jeremy stated??!
It has been interesting to see the warranted pushback here. The hard part will be not letting up. It's tiring but we have to rally, and I know we will
It is different when the "rallying" comes from the ones who are most vulnerable and marginalized. I was asked to speak at the Social Security Indivisible-Hands Off rally in Springfield that Rachel Maddow showcased (which I did). I stood in the pouring down rain for hours at an April 5 Indivisible rally. I sign petitions, make phone calls, speak publicly pretty regularly, As chair of my Commission on Disability we are working with our mayor for an independent budget so we can help our disabled residents who will lose Medicaid benefits, possibly Medicare, and/or SSD. I'm also trying to get support for accessible housing so disabled folks DON'T HAVE TO GO INTO facility "homes" when independence is key to our physical, financial, and psyche health.. We need more than "pushback" and long legal battles. We enter 2025 already life-long fatigued by illnesses running amok and a healthcare system that actually neglects or impedes us, and a society that discriminates. I spent time in an ER last week too, not because it is my paid profession (demanding as yours is), but because I had a bad fall hitting my head after experiencing an exacerbation of Progressive MS (likely due to removal of my DMD), angina and hypertension (once again uncontrolled despite 4 meds for it), 2 past TIA's and NEVER SAW A DOCTOR, no neuro exam. Meanwhile, can't get a cardiologist available till September in Western MA. Give us a microphone so we can tell the story of the patient and their families. During Apartheid there was a Disabled Civil Rights group that emerged in SA. Their mantra was "Nothing For Us Without Us."
With respect Dr Faust please explain how "at risk" people would be defined for a vaccine. I guess we are speaking about the Covid 19 shot in this instance. For me when the recommendations become parsed with ifs/buts etc then people will tune out. What is defined as "at risk"? Maybe someone in their 40s takes BP med so they consider themselves high risk while someone else taking a cholesterol med at 50 and says no big deal I'm not getting a shot. Sure you can say age but beyond that how is it determined? People "lied" before when putting in to get vaxed & would embellish just to get in for a booster. Does each person have to ask their doctor if these new guidelines start up? I feel that you can say particular ones should get another Covid shot BUT also say anyone who wants one can still get one as well INCLUDING kids. My sense is that it will make it more difficult to be left more open to anyone who wants a vax or booster with these potential new guidelines.
That is a great question. I *believe* ACIP is going to define this better as well. The list of conditions that has been considered high risk was fairly lengthy and inclusive, and has not been updated in what I call the "immune era" (that is, in which >99% of people are either vaccinated, have recovered from prior infection, or both). In my view, the list could reasonably be narrowed, but we'd actually need some more recent data on this.
In addition, this is where nuance matters. For example, if you take a biologic (like a monoclonal antibody) for something like Crohn's or Rheumatoid Arthritis, that might be high risk because these agents cause a degree of immunecompromise. But what if you took it for 3 years but you and your doctor decided that you could stop it, and so you've been off that drug for a few months? When does your risk return to normal? Nobody knows that now.
I also think that there are degrees of illness. Take someone with very well controlled diabetes and another whose diabetes is not well controlled. One might be high risk and the other not. But where's the line?
That's why I think doctors and patients need to come together and decide--and this is key---have the freedom to decide.
This argument makes sense for vaccines like COVID but not for many other vaccines (like MMR), where a very high rate of uptake in the community can actually eliminate the pathogen.
I agree with you that people will sometimes not be entirely truthful in pursuit of a treatment that they want. Vaccine recommendations can't be built around these folks.
Your question of how the vaccines will be administered if the recs change is a good one. I don't know whether the pharmacies will continue to provide them, but I suspect that they still will. For example, you can get a shingles vaccine at CVS or Walgreens, if you qualify; what I don't know is how they'll handle people who want those shots who fall outside the recs. It could come down to how the recs are written. If they say some "should" and others "may" receive the shots, I think it'll be basically a non-issue. The question is what happens if they do not say that standard risk people "may" receive the shots. In that case, I imagine it'll be harder to get (i.e. may have to go to your doctor).
My family clinic doesn't carry the Covid vax. Only the pharmacies carry it. I think maybe because of refrigeration space. So.....if it restricts for more or less "average" people then it would likely be a problem in this area. I would guess other areas too. Then you get into the underserved areas and rural areas a whole other issue too. Will they get access to the shots especially under Jr.
Thanks for the lengthily reply Dr F. I just remember from when the CDC tried to break down who should and shouldn't get vaxed and I was screaming going "Just let anyone get a booster if they want"!!! How many will get their doc's advice- some will sure but many don't have the time to do through all the checks of should I get the booster. There were arguments like Dr Hotez/Fauci said just let whoever wants a shot get the booster while others like Dr Offitt/Gounder, etc said no make it more nuanced. Many don't have the time to be checking with their clinics, etc or going through a list. Then add in the ones heading HHS now they won't push any more Covid vaxes, how much will the pharma ones manufacture this time- they don't want a lot thrown away, And you mention other vaxes might not work with the same guidelines- well people will just say wait why are you giving out different guidance on these vaxes? Just lots of concerns.
Your final sentences there will make a difference. Will it say "may" or "should". And then dealing with availability or insurance the way things are phrased will make a big difference. The way Jr handled the measles outbreak I don't have a lot of confidence for the fall with especially flu and Covid vaxes!!!
Awesome summary!
Thank you so much
As someone who can only take the novavax and is at high risk this is very concerning! I was due for my six month booster in May. In the past I have had no issue in finding one. I have had 3 previous ones. This spring I had to get mine early because there were only two doses in my area left requiring me to push it up by a month. Without my twice a year novavax I will no longer feel comfortable moving out in the world. I don’t think many understand that for some the mRNA isn’t an option.
Informative, well-researched & entertaining!
I echo your observation that public outcry led to rapid reversal of 2 “oops” declarations re an autism registry & defunding for Women’s health.. & agree that this underlies the sentiment that our voices still matter.
Thank you!
Palace intrigue.. indeed