The CDC is honest about the shortages of life... - CLL Support

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The CDC is honest about the shortages of life saving medications Sotrovimab and Evusheld

bkoffman profile image
bkoffmanCLL CURE Hero
43 Replies

CDC HEALTH ADVISORY: Using Therapeutics to Prevent and Treat COVID-19 was distributed via the CDC Health Alert Network, Friday, December 31, 2021, 5:00 PM ET. The CDC is honest about the shortages of live saving medications available and how the most vulnerable must be prioritized. Releasing only 50,000 doses of Sotrovimab and Evusheld every week is a dangerous joke. Rush these life-saving meds out! Lives are in the balance!cllsociety.org/2022/01/cdc-...

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bkoffman
CLL CURE Hero
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43 Replies
Justasheet1 profile image
Justasheet1

I’m sure the well connected are getting the meds, immune suppressed or not.

I expect to try and duck this for a month and hopefully the supplies will begin to kick in.

Jeff

RosettaClapp profile image
RosettaClapp in reply to Justasheet1

Fox News !!!!

Annie1920 profile image
Annie1920 in reply to RosettaClapp

I'm saying that Fox news is very often exaggerated and quite often false news; based on biased sources at best to pander to a right-wing consumers.. My strongly held opinion based on often fact checking what it puts out. If you agree or not does not concern me

cajunjeff profile image
cajunjeff

I found Evusheld at a rural hospital a hundred miles north of me. I then found a local doctor and explained my situation to him. He knew nothing about Evusheld but read the literature I gave him and was happy to prescribe it for me. Despite the fact the hospital had Evusheld for about ten days, I was the first one there to get it. The nurse who gave it to me said I was his first. The people at the clinic could not have been nicer to me.

I had a great amount of bruising on my torso appear a couple days after my Evusheld injection. I don’t know off the bruising relates to the Evusheld or if it’s from my acalabrutinib and just coincidentally appeared after my injection. I’m still being careful, dozens of friends have Covid now. They are almost all mild cases. I hope I have some protection now.

I think there will be a shortage of Evusheld for everyone based on the number of people who need it. But I also think some people on here could get it if they acted now. Evusheld has a very narrow approval of who can take it and the recent guidance puts people with blood cancers at a top priority.

I did daily research to find it in my state. Once I found a place that had it I found a doctor there to prescribe it. That might not work for everyone, everywhere, but I would not just assume you can’t get it because it’s scarce. We are our own best advocates. If you want Evusheld, find it and be the squeaky wheel to get it.

DRM18 profile image
DRM18 in reply to cajunjeff

Bruising on your torso, Jeff?

But the injections were in the bottom, no?

—Dave!

Dinasantos profile image
Dinasantos in reply to cajunjeff

What state are you in?Thank you!

DRM18 profile image
DRM18 in reply to Dinasantos

He's in Louisiana, I believe.

PS: I got the Evusheld injections too--I'm in Texas.

Dinasantos profile image
Dinasantos in reply to DRM18

Not able to get in massachusetts…Only if you are positive.

Thank you

Justasheet1 profile image
Justasheet1 in reply to Dinasantos

Dina,

If you’re positive you are only supposed to get Sotrovimab.

Jeff and Drm got Evusheld which is only used before infection as a prophylactic.

Jeff

Dinasantos profile image
Dinasantos in reply to Justasheet1

Jeff,

Thankfully I am not. I am a frontline healthcare worker and was trying to get the monoclonal antibodies just in case, but no luck. I called every hospital, clinic within 2 hours car ride from me and everyone said either they did not have any or they only have limited amount and only giving it to high risk Covid positive people.

Also, was told that Evusheld does not work against Omicron…

Now keep in mind I live in Massachusetts where we have some of the best hospitals in the country, so I am baffled by the fact that this country/state 2 years into this got caught so off guard, even with testing…

So back to walking away from work to I can shield to protect myself…

Thank!

Dina

Justasheet1 profile image
Justasheet1 in reply to Dinasantos

Dina,

Evusheld has been tested against omicron. It is a two drug combo and one of the two doesn’t work against it.

But, the other one does so there is reduced efficacy but it’s still better than nothing and if you happen to get the Delta instead, you’re in better shape.

Jeff

Dinasantos profile image
Dinasantos in reply to Justasheet1

Thank you Jeff

kimiD profile image
kimiD in reply to DRM18

Where did you find them in Texas? I'm in San Antonio.

DRM18 profile image
DRM18 in reply to kimiD

Hi kimiD,

I’m in Deep South Texas, McAllen/Edinburg, in the Rio Grande Valley, 8 miles north of the border. I found Evusheld via the research & development office of a local hospital (Doctors Hospital Renaissance).

—DRM

kimiD profile image
kimiD in reply to DRM18

I would be willing to drive to McAllen. Could you message me and share the process of contact info on where and how you were able to get Evusheld?

KMac1969 profile image
KMac1969 in reply to cajunjeff

I'm working with the state health department and the local Cancer Center to get it set up. When I reached out to the Health Department, I found out that no one within 100 miles of me had requested to be a administration site or had it. I contacted the Director of the Cancer Center and put them in contact with each other. Still nothing yet, but I am trying.

Out of curiosity, how did you "find" Evusheld at a small hospital?

I guess what they say about Alabama is true, we are just backwards.. Always the last to get something and I have to do all the legwork. I see people getting the shots of Evusheld, and I can't find it anywhere.

cajunjeff profile image
cajunjeff in reply to KMac1969

I kept googling the words “Louisiana” and “Evusheld “ together until one day a random story appeared about a small hospital north of me getting an Evusheld allotment.

Initially I sent that info to my local doctor and asked him to be in the lookout locally for me. While I would guess some other hospitals did get an allotment, I couldn’t find one. That’s when it dawned on me to travel to get my injection.

I called a good friend who lived in the town where the hospital with Evusheld was and asked if he had any pull at the hospital. He called his personal doctor and asked him. His doctor called me personally and after hearing my story immediately set me up for an injection.

Had that not worked I probably would have called the state dept of hospitals or the governors office for help. The guy who gave me my shot told me Oschners hospital has Evusheld now, but I don’t know which oschners.

KMac1969 profile image
KMac1969 in reply to cajunjeff

That is the route I am taking. Just not having any luck..

Smakwater profile image
Smakwater in reply to cajunjeff

That's advocation. Good work Jeff.

Mystic75 profile image
Mystic75 in reply to cajunjeff

You're a good example of how to be proactive, Jeff!

country76 profile image
country76

Thank you

country76 profile image
country76

Thank you

Pin57 profile image
Pin57

MABs are Definitely in short supply in Colorado n interesting Dr K that my CLL doctor’s office has just developed a simple MABs priority chart based on CLL case situation. W&Wers like me don’t register on the chart, not surprised. Just not enough Sotrovimab to go around they say.

It’s a huge silent crisis n no government “warp speed” urgency to plan or solve for this shortage?

ElMaga profile image
ElMaga

Even if it were available, how would one get access to it? I can't find any information . thanks.

Jonquiljo profile image
Jonquiljo

Thanks Brian - for bringing this shortcoming to light. We really have an impotent government here that is really failing this country and especially the immunocompromised.

Just because a few industrious people are finding these things and getting them, it is not the way we should have to deal with it. Not everyone who needs “extra help” with Covid knows where to go and what to get.

50,000 doses each week of Sotrovimab and of Evusheld are, as you say a joke. We are a country of 330,000,000 people! There is no excuse for such a poor response to the pandemic.

It has been in the front of everyone’s mind that a new variant could come around and cause havoc. This is really not unexpected. In fact, we should have expected the unexpected! The shortages of Sotrovimab and Evusheld are perfect examples of that. Our total order for Evusheld is in the 800,000 range, when we need many millions. No one seems to want to ink any Federal contracts for more while people are in dire need. It is illegal for states to buy Evusheld and it is not available as a "pay as you go" pharmaceutical.

In addition the US has ordered 10 million courses of Paxlovid, but it “forgot” to account for the fact that each synthesis of this drug takes in excess of 6 months. With forsight, our government would have ordered tens of millions of doses and assisted Roche in scaling up the processes. Those 10 million does will not be delivered until the end of 2022! The same could have been true of Sotrovimab and Evusheld.

Instead we sat on our thumbs. We continue to sit on our thumbs when basic intelligence would dictate that we have put alternative strategies in motion a long time ago.It's not for lack of money as we seem to be willing to spend Trillions and trillions on social programs. Where are our priorities?

Did our government and bureaucrats really think we could crush the pandemics with the vaccines in hand, a couple of monoclonals, and a few vague promises of new treatment drugs? Pathetic strategies by pathetic people.

We now hear constant prophecies of a waning pandemic. Now isn’t that wishful thinking? Yes, it could happen .. but it equally has the probability to morph into a nasty disease that will makes us even more miserable than we already are?

This is all an inconvenience to our leadership. I don’t need to name names - it is obvious. They would rather be doing something else. Well - that’s not right!

LeoPa profile image
LeoPa in reply to Jonquiljo

Politicians are the first to blame but let's not forget to see the log in our own eyes before we see the splinter in theirs. Lots of unvaccinated people of all age groups feel they have a right to claim MABs when disaster strikes. Well, no. My moral matrix says they have none.

schmitthj007 profile image
schmitthj007 in reply to Jonquiljo

While I entirely agree with you that preparedness for a pandemic by our government has lacked for decades we were fortunate to have developed life saving prevention for covid. As I wrote many times on this blog we have to fight this pandemic with everything we have including mask wearing social distancing vaccination and in the end antivirals and monoclonal antibodies. I find it hard to lay blame on our government when almost 1/3 of we the people refuse to take preventive measures that are widely available cheap and highly effective (for the immune competent). Scarce and expensive resources should be the last resort in my opinion and the lessons we have learned do not bode well for the next pandemic.

Jonquiljo profile image
Jonquiljo in reply to schmitthj007

You can’t blame the vaccinated for the “sins” of the unvaccinated. At some point the government has to focus and provide more anti-covid measures for the vaccinated.

cajunjeff profile image
cajunjeff in reply to Jonquiljo

You are constantly bashing the govt in your posts and I have resisted responding thus far so as not to be drawn into a political debate. I am curious though. Is it the current administration you are angry with or the one before that sent mixed messaging on vaccines, mixed messages on masking, promoted unproven drugs, downplayed the virus and suggested ingesting bleach might be the answer?

I think it is fine to point out failings on any administration to the Covid crisis. There has been a failing of both administrations in the US to some degree.

On the other hand, comparatively speaking those of us in the US have way more access to vaccines and life saving drugs than many countries.

I think there is a way to criticize the govt response without calling people in the cdc pathetic people.

And it’s fine if you don’t like some social programs. I just don’t see our Cll forum as a place to get into such politics. I did try to ignore the constant attacks on our govt, I think its suggesting that people like Dr Fauci are pathetic that provoked my response (I’m not 100% clear who all the pathetic people you refer to, is it all the men and women in the cdc?). And are you saying the govt has a duty to pay for our very expensive monoclonals? Wouldn’t that be a social program?

We have people on here with diverse political views. I saw Dr Koffman’s criticism of a particular part of the US govt response to Covid and lack of availability of monoclonals to be succinctly stated so we can have a proper discussion.

Bashing the govt on broad spectrum of policies, some unrelated to Covid, with ad hominem attacks is less likely to result in a civil discussion that helps Cll patients. That’s my view anyway.

Smakwater profile image
Smakwater in reply to cajunjeff

I like it!

Let's not bash anyone, rather do the right thing.😀

kathymac5252 profile image
kathymac5252 in reply to cajunjeff

thank you---- i have held my tongue as well---you expressed my opinion on these posts brilliantly

Jonquiljo profile image
Jonquiljo in reply to cajunjeff

I see the endless supply of bureaucrats to be counter productive. I also think that after 2 years of this pandemic, we can work even harder to eradicate the disease.

It’s really hard to talk about the nation’s response without at least touching on politics. Thats because Covid has become political in a major way. I couldn’t stand that when the last administration turned everything into a circus of denial nor can I stand it when I see our current leaders Falling into a vegetative state.

We are fighting a very dangerous virus that will soon have killed a million people here. If it were a foreign power that was causing these deaths and not a virus — we would be mobilized on every front to fight it. Beyond the issue of fighting this pandemic, I could care less about politics.

I was extensively trained as a molecular biologist who went on to work in the biotechnology industry. I have seen complex problems solved - like HIV in the 80’s and 90’s. What I have seen is that there are enormous numbers of capable people who can work on Covid and put an end to this disease. What is needed is a huge social commitment to working on the Covid problem. That requires lots of money and government commitment. I really don’t see that happening.

Many people in this country are frozen in their tracks by Covid. Many people (like the immunocompromised) are “jailed” at home with very few places to go.

Sorry, but if our government is not performing well - we must call it out. What else do we do? Sit at home and do nothing all day while Covid cripples our society? And yes, Covid has the potential to do that if it already hasn’t. We seem to be surprised when omicron reared its ugly head. What do we do when the next variant/mutant comes around?

LeoPa profile image
LeoPa in reply to Jonquiljo

You are trying to fight this war on the wrong front. The conspiracy theories and those who are spreading them have to be eliminated because they are the ones messing with people's minds making them to reject proven measures to fight this disease. And that is difficult to do because of freedom of speech. We have the same problem over here. And there is no easy solution. It's unlike science. It's a hybrid war. It's like economics. Not an exact science. No clear-cut solutions in democracies. The Chinese have a simple solution but that is not a democratic one. Dictatorships have some advantages.

Justasheet1 profile image
Justasheet1 in reply to Jonquiljo

Jon,

I loved your post and found only one thing that I would edit. The “pathetic strategies by pathetic people” of the CDC. I’m sure they are trying their best.

Politics keeps popping up with Covid discussions but really how could it not? I haven’t seen what cajunjeff has said he has seen in your posts but he has called me out on this forum before for similar rhetoric.

Stay safe and well. I enjoy your posts and find them to be well articulated and forthcoming.

Jeff

Jonquiljo profile image
Jonquiljo in reply to Justasheet1

Thanks Jeff - for understanding my intent. Since I was a scientist, I tend to be the hardest on the performance of scientists.

I would have hoped for so much more in the efforts to stop this pandemic and disease. What I see is bureaucratic and political meddling.

I am shocked at how many people have died here and how people have become so “used to it.” That doesn’t even count what are likely a far greater number of people seriously and permanently harmed by this virus.

The funny part is that I agree with cajunjeff — I wish, however, he understood my motives. I see the enormous potential of our scientific resources being totally underutilized. That’s all!

We are severely lacking in monoclonals and therapeutics for Covid for a reason — our leadership is not performing their jobs as needed. Fauci is not a problem - but many others are. Two years after it emerged, the virus is winning. We could do more, however.

In 1941, this country mobilized in an enormous effort to fight WW2 - a war for which it was totally unprepared. The war effort required all or most of our time, focus, and money. The only reason we prevailed was because we were able to mobilize our resources.

In 2022 - we are fighting a virus which has killed far more than the US lost in WW2. The effort to stop Covid should be equally as enormous. We have the technology - lets get in there and give it 200%!

Thanks again, Jon

cajunjeff profile image
cajunjeff in reply to Jonquiljo

Jon, I have zero issue with your criticism of the govt response to Covid. I think that’s fair game for discussion. I think there have been failures with both administrations.

All too often it seems to me that you include in your criticism of the government response to Covid, criticisms of things like social programs that have zero to do with Covid or Cll. Calling California a mommy state, calling cdc people pathetic and characterizing social programs as all giveaway programs all have distinct political undertones to me.

I haven’t responded before this. I don’t mean to be disrespectful and I am not a moderator. I certainly don’t want to get into a political debate. Maybe it’s just me, as Jeff implies, that perceives that your criticism of the govt goes well beyond Cll and Covid issues. I am just tired of politics bleeding into so many discussions. It probably wasn’t my place to say anything. I think the suggestion that people responding to the pandemic are pathetic is what triggered my response

AussieNeil profile image
AussieNeilAdministrator in reply to Jonquiljo

Hi Jon,

I hope you take on feedback from the two Jeffs. It's those unnecessary throw away lines which detract from your replies. Also, don't forget that during WWII, there were at times massive wastes of resources, including sadly so many lives, due to (usually appreciated retrospectively) poor decisions.

Neil

Jonquiljo profile image
Jonquiljo in reply to AussieNeil

OK. Will do.

81ue profile image
81ue

Scarce supplies

This chart shows how many doses of each treatment are released per week in USA phe.gov/emergency/events/CO...

This chart shows the allocation of the released doses per state phe.gov/emergency/events/CO...

mk2045 profile image
mk2045

I have yet to receive any information (though I've contacted the CLL Society) as to how far out from an infection one can get Evusheld. The literature says "recent infection or exposure." Unfortunately I have covid now and am pretty sick with it though no hospitalization. I had hoped and prayed I could get it before traveling to meet my new grandson. My husband traveled through airports and caught it. He's not immune compromised so he's fine. I'm immune compromised and on acalabrutinib. I'm so discouraged. How long will I have to wait I wonder.

bkoffman profile image
bkoffmanCLL CURE Hero in reply to mk2045

No data that I know of. Probably would be recommended to wait 90 days, but that is just a guess. No much downside that I can think of from getting it earlier other than you probably don't need it and others do.

mk2045 profile image
mk2045

Thank you.

dmmck profile image
dmmck

What is the most effective way to make our voices heard? I am calling my congressman tomorrow.

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