COVID and (lack of) access to monoclonal antib... - CLL Support

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COVID and (lack of) access to monoclonal antibody treatments

Daisyinmaine profile image
66 Replies

Hi CLL comrades, I've been on W&W for 6 years. I've received both doses of the Moderna vaccine as well as the booster, and still have no antibodies. With a busy job I need to keep for insurance and young unvaccinated people who depend on me, I am trying to put a plan in place for if I get COVID. After speaking to my PCP and directors of the local infusion center, it's clear that the system is currently so swamped with very sick unvaccinated people that no one can guarantee that I would be able to receive lifesaving monoclonal antibody treatments should I need them. I was told to speak to state officials so I reached out to various people and asked why the state isn't setting aside, say, 3% of these medications for those among us with blood cancers and other immunosuppressing conditions who have done the right thing and gotten vaccinated but are experiencing vaccine failure and who face dire consequences if we get COVID. To date I'm hearing crickets, and before I move forward I want to make sure I'm not barking up the wrong tree. I'd love to hear your thoughts!

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Daisyinmaine
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Davidcara profile image
Davidcara

That’s not the way healthcare works; setting aside resources for people who may or may never need them. When a resource is in high demand, or if there is a shortage a responsible health care organization will do the following: Develop guidelines or standards that must be met before the resource can be used. For example, say blood is in short supply: A persons blood count would need to be at a certain level before the blood is released for the patient. Maybe the hemoglobin might need to be below 7.0, or below 8.0 if they have symptoms. Maybe, if usually you can save 4 units for upcoming surgery, you can only save 2 units now. Say an antibiotic is in short supply, you might need to justify when the antibiotic is needed with a positive blood culture. In most cases, health care does not save resources that are in short supply for people, the use of those resources usually need to be justified.

lankisterguy profile image
lankisterguyVolunteer

Hi Daisyinmaine, -

Do you have a CLL expert doctor or a good hematologist/ oncologist that you can contact? Their procedures and priorities might be different than a state run site. And they may already be navigating for other immune compromised folks with all types of diseases.

-

Len

Justasheet1 profile image
Justasheet1

Daisy,

The word is out amongst the unvaccinated. Gladly avoid the FDA authorized vaccine and stick to your rights, unless you get sick then use up a finite and FDA emergency use authorized commodity that many immune compromised folks depend on for their life.

Do not expect doctors to intervene here, this is bureaucracy and selfishness at its finest.

Jeff

Davidcara profile image
Davidcara

I asked my oncologist about monoclonals a few weeks ago. He said, they are available. I’m not going to get to crazy about this unless I need them, and of course hope that does not happen. Just because they are available now, does not mean they will be available when needed. Just need to know how to look into getting them if needed, and hope they are available at that time.

Justasheet1 profile image
Justasheet1 in reply to Davidcara

David,

You better hope and cross your fingers and toes too that they are available when needed.

Jeff

Davidcara profile image
Davidcara in reply to Justasheet1

Well not much else I can do. Feel like I cannot get a bag of monoclonals and save them in my refrigerator.

Justasheet1 profile image
Justasheet1 in reply to Davidcara

David,I wish that I could. My wife is an infusion nurse.

Jeff

Davidcara profile image
Davidcara in reply to Justasheet1

I actually hope I never need them

SlowCLL profile image
SlowCLL

Daisy,

You are experiencing an all-too-common situation. With increased Covid infections among the unvaccinated, orders for doses of monoclonal antibodies jumped from 27,000 in early July to 168,000 doses per week my late August. Most of the increased demand for came from seven Southern states, where governors promoted this treatment as part of their COVID-19 response. In late August Joe Biden responded by placing the federal government in charge of the allocation system for the drugs to provide for a more equitable distribution among the states. Biden also arranged the acquisition and production of additional monoclonal antibodies.

Because of your name and situation I assume you are still in the state of Maine which is experiencing it’s largest Covid outbreak. It will take time for Biden’s changes to get more of monoclonal antibodies into Maine. I also assume the state now has less control over the supply of monoclonal antibodies than the federal government does, so I suggest you make your case to both of Maine’s senators and two federal congressional representatives. First call each of them, I would start with Angus King (who I understand is recovering from a bad Covid infection) followed by Susan Collins. You will reach a staffer, explain your situation, ask for a specific allocation for the immune compromised, or at least more monoclonal antibodies. Then write a follow up letter repeating your requests, be sure to include the name of the staffer you spoke with. A call followed by such a letter is more likely to inspire them to request a larger allocation for Maine.

Both Angus King and Susan Collins have significant influence, representatives Chellie Pingree and Jared Golden have less influence but may have more local staff on the ground in Maine.

I know this is a lot of work, but it may save lives and you are the ideal person to make the requests.

Good luck,

Owen

HopeME profile image
HopeME

I have to agree with Len, I’d get the opinion of your CLL Specialist or oncologist. Perhaps you can start with his/her supporting Nurse Practitioner? I’d save the state senator approach until I was actually ill as I don’t think you’d get much of a response for what at present is a theoretical problem.

Daisyinmaine profile image
Daisyinmaine

Hi everyone, thanks so much for your responses. I don't actually see this problem as hypothetical, as I'm not retired, so can't lie low, and don't want to find myself in a situation where I am ill and without ready access to these life-saving meds (too many young and old people depending on me right now). It's so incredibly frustrating to be endangered by unvaccinated people coming and going, first because they are prolonging this pandemic and again by using up these resources. And it seems to me that those of us who are experiencing vaccine failure (5% of the population?) are not top of mind for the decision-makers who are distributing these monoclonal antibodies. I appreciate Owen's advice and will be calling my senators on Monday morning.

HopeME profile image
HopeME in reply to Daisyinmaine

What do your doctors say?

Annie1920 profile image
Annie1920 in reply to HopeME

There a results available from the Israeli study that says that W&W patients do very much better than those on treatment.. Some thing like 80% to 4%.. Thus emphasising that antibodies levels are very far from the whole picture when it comes to immunity.. Other fa tors play a huge part

SofiaDeo profile image
SofiaDeo in reply to Daisyinmaine

I would do the senator thing ahead of time, these potential allocations would take some time to set up. Also consider if you could go elsewhere (Boston, NYC) if exposed. If you aren't totally strapped for cash, consider getting some air sanitization method for your house, or at least your bedroom. A whole house system that installs in your HVAC is under $1000, and room units are smaller. I have written about this technology before, which was initially developed for the Space Station. I believe in it. Large corporations like Marriott and some of the Las Vegas mega-resorts are installing it. I am able to sleep in the same bed (king, with our backs to each other, plus I do some additional precautions) as my partner without catching it. This was tested (for us) and it was the first time I didn't catch his cold. Even if exposed, the viral load in your bedroom/house will be really low and while there are no guarantees regarding severity of illness, it's pretty well established that a lower viral exposure/load equates with a less severe illness.

If you are interested, the company (2 websites for different products) are airoasis.com and hypoair.com. I have the BiPolar HVAC unit, IonicAir units at my door entrances, I put an Air Angel in my car, plus Germ Defenders in bathrooms (both which can be taken to DDS or doc's office), and I feel very confident when I get exposed, my disease will be minimal.

Cgolen99 profile image
Cgolen99 in reply to Daisyinmaine

I couldn't agree with you more, and have the same mantra repeatedly. So very scary and so so incredibly frustrating! Their "person choice" isn't personal at all. Boils my blood!

zaax profile image
zaax

Just a little point you should not be getting a booster which is 1/2 a normal dose, but a 3rd FULL dose of one that you haven't had before

Jonquiljo profile image
Jonquiljo

Hi Daisy,

I don't know where in Maine you live - but its a big state anyway. What you can look for is a backup hospital - likely far away that can give you an infusion. The bigger the hospital the better.

At worst you could "theoretically" go to the Boston area or Boston itself. There they must have lots of places that have been rationing out monoclonals for those who need them. It's probably tiring to get there, but if you could get someone on tap to help you get there- it may be doable.

You'd need to call potential infusion centers and at least know their procedures in advance. You may need copies of your medical records, etc. They can tell you I can't.

Supposedly there will be a big influx of newly purchased Mabs in about 2 months. The governments are not going to give them away as foolishly as they have done before. But until then, I bet the large medical centers have large amounts and will give them only to people like yourself - people who really need them.

The best of luck - and I understand your predicament.

HopeME profile image
HopeME in reply to Jonquiljo

Hello Jon:

Maine is a big state but a large percent of the folks live in metropolitan Portland or south of metropolitan Portland so from that perspective the state isn’t terribly big. There are lots of trees and Moose above Augusta. I’m not sure where Daisy lives but odds are high it is in southern Maine.

I also thought about the Boston hospitals because Portland is only about a 2 - 2 1/2 hour drive to Boston. However, I wonder what type of run around he’d face walking into a Boston hospital trying to explain his problem. Being an established patient at a hospital gives one a big edge. Like anything in life relationships are important and they help facilitate uptake in a hospital setting as it takes time to get medical records to the right place. It will be interesting to hear what the politicians have to say.

Best

Mark

Jonquiljo profile image
Jonquiljo in reply to HopeME

Boston has soooo many hospitals that I’m not so sure you could be “known “ by the system. Yes, being an established patient at a hospital gives someone an edge, but I think hospitals are into saving lives — not treating patients who are part of ‘their group.”

If a Maine Dr could get through to an infusion unit, I’m sure they would get Daisy set up “just in case.”

This is a time where many hospital systems can access electronic records from many other hospital systems.

It's worth a try. If Portland is an option, that would be worth a try also. I’s been 45 years since I lived in Boston. I’m sure it has changed a lot. But I do gather it has a glut of hospitals — mainly to support all the medical schools in the area.

LeoPa profile image
LeoPa

Every unvaccinated person should pay cash, up front for the monoclonals. These are big business for the maker, not the vaccines.

michaeledward profile image
michaeledward in reply to LeoPa

I totally agree. It seems, at least in certain states (e.g., Tennessee), those who have covid and are at RISK of a bad outcome from covid have "head of the line privileges" when it comes to being given monoclonal antibodies. Unfortunately, the unvaccinated represent over 95% of covid cases and since they are at highest risk for serious outcomes, they are first to get monoclonal antibodies and because of their overwhelming numbers, the rest of us have to settle for "leftovers" if there are any. I better leave it at that at the risk of becoming too political.

newyork8 profile image
newyork8 in reply to LeoPa

Abd if they dont have the upfront cash would you let them die?

LeoPa profile image
LeoPa in reply to newyork8

No,lend them on 20% monthly interest. Covid should not be insured without vaccination. All costs paid in full.

newyork8 profile image
newyork8 in reply to LeoPa

Same for smokers, obese, bad eaters, non exercisers. In fact, any illness that could be voluntarily prevented...any bad behavior or bad decisions that causes disease ...those misguided people should not be supported by those who take care of themselves. Guess that's the end of socialized medicine. Better yet only taxpayers should get the benefit of Regeneron as the government paid for it.

LeoPa profile image
LeoPa in reply to newyork8

No that is something different. Nobody is asking anybody for a lifestyle change. It's a pain free 5 minutes thing. Very easy to do. Not doing it means pure selfishness.

Pooldude05 profile image
Pooldude05 in reply to LeoPa

And those very bad bad type 2 diabetics should have to pay cash for their insulin for the poor choices in their diet and lack of exercise they have made ,that will teach them !!!

LeoPa profile image
LeoPa in reply to Pooldude05

Do you think so? Because I don't. Firstly exercise has nothing to do with diabetes. Secondly it is not only the patients who are at fault. Politicians, food manufacturers and the medical establishment are guilty in the first place. Quite unlike taking the vaccine shot diabetes is a much more difficult thing to fix. So no need to try to hide behind justifications like this. Getting the vaccine takes 5 minutes, costs nearly nothing and is a demonstration of societal responsibility and unselfishness.

newyork8 profile image
newyork8 in reply to LeoPa

Excuse me, exercise has nothing to do with diabetes? Really? Obesity does not create insulin resiatance? So you want people to be responsible and take the vaccine (I agree) but blame obesity on others? Check out the obesity %s at all you can eat buffets (which I love).

LeoPa profile image
LeoPa in reply to newyork8

That's correct exercise has nothing to do with diabetes. Obesity has nothing to do with exercise either. Obesity does not create insulin resistance. They just happen to have a common cause. But not in all cases. There are overweight people who are not insulin resistant and there are thin people who are insulin resistant. It all depends from the composition of the person's diet. Exercise is healthy but it does not prevent the insulin resistance. You cannot out exercise a bad diet. If you want to understand all the hows and the whys please read the book that I referenced in my last but one post. I promise you will learn a lot. And you will leave the calorie paradigm behind.

newyork8 profile image
newyork8 in reply to LeoPa

So many of those who get gastric bypass surgery reverse diabetes correct? Please explain.

LeoPa profile image
LeoPa in reply to newyork8

As I said you need to read the book. Most gastric bypass patients gain the weight back as the stomach volume expands. If they reverse diabetes which I have not heard about, then the mechanism would be thanks to a drastic decrease of volume of food ingested. They simply cannot eat enough to overload the liver and the pancreas. Because this is what most people routinely do everyday. But as the stomach starts expanding and the bypass patients gain the weight back all hell breaks loose. Other than a gastric bypass it is not possible to continue eating the wrong kind of foods and reverse diabetes. A person would rather chew tree bark than stay that hungry for long. If you want to know how all this works on the cellular level as far down as the mitochondria you need to read the book. There isn't enough space here to disperse all your doubts. I would have to write a book. But fortunately I do not need to because someone else did it already 😉

I forgot. Gastric bypass is the worst idea ever. Apart from being very expensive, it is very risky too. 1 in 10 die on the operating table. Then they have to do something about the excess skin. Which is a huge problem and a big operation. Again a highly risky and expensive thing. And it still does not fix the root cause of all the problems. Which re-emerge as soon as the volume of the stomach expands and the person gains all the weight back. There is a cheap and available easy solution that fixes the problem at its roots. The skin contracts as the person gradually loses weight. There is no need to cut anything. And tens of thousands can be saved. All the while you do not need to exercise or break a sweat even. All you have to do is read the book to find out how.

newyork8 profile image
newyork8 in reply to LeoPa

I'll read it.

LeoPa profile image
LeoPa in reply to newyork8

You will not regret it I'm sure. It's a page turner. The biggest bang for the buck healthwise.

LeoPa profile image
LeoPa in reply to Pooldude05

BTW why would I, who took the vaccine and behaved patriotically (putting society's and my fellow citizens' best interests ahead of my own by perhaps taking a slight risk in doing so) contribute to the medical expenses of another citizen paying into the same pool of money via medical insurance who decided not to take the vaccine and ended up on a ventilator or with long covid thus causing tens of thousands of expenses, if not hundreds of thousands, to the insurance company? I want that guy out of the insurance pool. I don't want to pay for his medical expenses. Insurance is there for all of us to weather unexpected and unavoidable events, not to cover self inflicted harm. If someone suffers an adverse event from the vaccine, that's different. I have no problem contributing to his medical bills. I saw a person yesterday in the supermarket demonstratively wearing his mask under his chin, while others were responsibly wearing theirs. He probably thought of himself as courageous and of the others as wusses. What I thought is quite the opposite. These are the same guys who refuse the vaccine too. What do you call a person who refuses to get a vaccine because he is too afraid of an adverse event he heard about on some social media or conspiracy site? I call him a Pussycat Doll. Nothing against the band though :-) I don't see any of these persons in covid wards helping out as volunteers. Such is their bravery. Unlike the first line workers who risked and lost their lives during the first waves when vaccines were not available. Those are the heroes. Streets should be named after them. These anti vaxxers and anti maskers are just "what's the word for the other end of the spectrum where Genius is on one end?" That's what.

Newdawn profile image
NewdawnAdministrator in reply to Pooldude05

It’s interesting that we CLL’ers ask for public understanding about our condition and how it can be different for each person in terms of severity and speed of progression. Yet these same stereotypical views are peddled about ‘lazy, greedy diabetics’ who should be made to pay for their nutritional sins!

I’ve been a member on a very well regarded Diabetes Site for many years and have been astounded by the number of thin diabetics and overweight ones too where causation is much more complex than ‘gluttony’. However, it pleases the public to vilify. People can develop diabetes for a host of reasons including steroid induced, pancreatic damage, gestational that progresses to full diabetes etc. These are a few of the types of diabetes that are badly understood even by medics but over the years I’ve come across so many in these groups. However, if they are fat, maybe we should just put them in the undeserving group? 🙄

Should type 1 diabetics who have an auto-immune condition that they have no control over also be made to pay for their insulin if their diet isn’t as good as it should be?

Types of diabetes

Maturity onset diabetes of the young (MODY)

Neonatal diabetes

Wolfram Syndrome

Alström Syndrome

Latent Autoimmune diabetes in Adults (LADA)

Type 3c diabetes

Steroid-induced diabetes

Cystic fibrosis diabetes

Incidentally, in receiving services/meds from the NHS, I’ve already paid for them through my NI and tax contributions.

Newdawn

Pooldude05 profile image
Pooldude05 in reply to Newdawn

My comment to leoPa was to mirror back to him the absurdity of his comment on making unvaccinated people pay for monoclonal antibodies, I believe it is still a personal choice whether to choose to be vaccinated against covid the flu or whatever,and many folks and myself are tired of being told what they should do in these situations whether we choose to get vaxed or not , the example I gave on type 2 diabetes was just how crazy it sounds to say people who come down with certain ailments whether it be by their own faults or not should be punished financially for it ,by the way my best friend and brother of 46 years is a type 2 diabetic ,anyhow I believe we should stick to helping and encouraging one another concerning CLL it is a tough enough road to travel ,and keep our politics and fault findings elsewhere 🙂

DUKELAXDAD profile image
DUKELAXDAD

You could go get the Pfizer vaccines. Just don’t tell that you have had Moderna before. Tell them you are unvaccinated!

Sojomama13 profile image
Sojomama13

Hi Daisyinmaine,

I join you in your frustration. Your argument to withhold a certain percentage of monoclonal therapies to be reserved for those who are immunosuppressed is rational, fact based and logical. Exactly the reason it will not be put into practice. Time and history have shown us that the majority of decisions made by government officials are rarely, if ever, based in rational, fact based or logical thinking.

I have heard so much about the “rush” to the vaccine that I decided to do my own research about the Polio Vaccine. I encourage anyone who has heard the terms — Mandate, government control, lacking approval etc. to do the same. It was an eye opener for me to say the least.

There was a time that I could understand pandemic fatigue/Covid fatigue/mask fatigue etc., but that time ended when I was harassed multiple times by people telling me to remove my mask, It’s a Hoax and many more. I now have AntiVax Fatigue. I did have 2 very good friends who refused to get the vaccine until it received full FDA approval. Important to note that one received their vaccine that day, the other the next day. Although I didn’t agree with their position, I could certainly understand their argument. I have many friends who work in healthcare who will be haunted for years of memories holding hands of the dying because their family cannot be with them in their final moments or the people begging and pleading for the vaccine before they get placed on a ventilator because of Covid. Yet the number one way to stop the pandemic and move towards a life of normalcy is to be vaccinated and make certain that vaccines are available to everyone all over the world and still we resist. I know my patience is wearing quite thin hearing people talk about their choice and their rights. It wasn’t my choice to get cancer. What about my rights?

Smakwater profile image
Smakwater

Daisyinmaine,

Always do what you require of yourself to advocate for yourself. define your advocacy objective. decide how much energy you want to dedicate to any one resource in the pursuit and move on. Stay away from judging those who will not help you, it consumes your energy and steals your joy. Rather, leave a bit of love for them to savour.

Focus on the more probable possibilities, you can define them more quickly because they bear fruit.

Somewhere out there, there is an apple with your name on it.

JM

Smakwater profile image
Smakwater in reply to Smakwater

Please understand that I say this with sincere humility. Covid is making us all crazy!

Edalv profile image
Edalv

There are many good suggestions already provided on this board. I think you are doing the right thing by preparing in case you need infusions. I would star by talking to your oncologist and general practitioner. They can help you navigate the system. Call your congressman and Senators. And my final recommendation would be to try a different vaccine. If you had Moderna already, try the Pfizer vaccine. It’s a shame that we are in this mess because certain people decided to politicize the vaccines, it’s a disgrace. Best of luck to you… 👍

newyork8 profile image
newyork8

On any day I can get monoclonals next day appt.. no doctor required. Did it already. I can to do it every month. I am not taking anybodys' dose. There are plenty of slots open. I have had NO response after 4 vaccines ..JNJ and 3 modernas. Stop demonizing our fellow citizens. Over 50 % of black americans dont want the vaccine. If they get saved by Regeneron does that upset some.? That means they stay out of hospital.

SofiaDeo profile image
SofiaDeo in reply to newyork8

Please stop making political statements, and stating statistics without VALID links to back up these "facts". We have been asked by our mods to avoid potentially inflammatory statements.

Pooldude05 profile image
Pooldude05 in reply to newyork8

Well said newyork8👍👍

ChattahoocheeBoy profile image
ChattahoocheeBoy

Have heard Florida was setting up such sites to treat COVID so could check into that possibility if needed. The otherwise idiot Governor has fought mask & shot mandates!

SofiaDeo profile image
SofiaDeo in reply to ChattahoocheeBoy

Please stop name calling. And the political statements. We have been asked this by our mods. It's one thing to say "I am not happy/pleased" or "I disagree" and if you are putting in links to your statements, it seems much more a "conclusion based on facts in evidence". You can say "I am aghast at having a governor who IMO has fought mask and shot mandates" if you don't want to link your truthful political type statements. Not everyone reads news from all over. We need to start being thoughtful and stating things this way to avoid infighting. Please.

Newdawn profile image
NewdawnAdministrator in reply to ChattahoocheeBoy

Please refrain from this kind of divisive political statement. This is exactly the kind of inappropriate and unwanted political content I was describing in this recent post;

healthunlocked.com/cllsuppo...

Newdawn

EKCekc profile image
EKCekc in reply to Newdawn

Newdawn, you are in the U.K., and I wonder if you appreciate the degree to which both the recognition of the pandemic, way back in early 2020, and the acceptance of public health mitigation measures were politicized ("politicised") by the previous U.S. administration. You must understand the frustration -- indeed, anger -- of those who searched for and followed the facts -- science -- in the face of those who chose to ignore or deny facts and to follow, instead, the conspiracy-mongers, science deniers, and those declaring their "freedom" not to participate in mitigation measures, including vaccination, once available. Telling us Yanks to, in effect, "sit down and stop bickering" implies that there is a moral equivalency to the two sides of the question and misjudges what is happening "over here." newyork8's implication of easy availability to the contrary, preferential use of limited supplies of monoclonal antibodies for those who chose to deny science until they began to get sick (or even THOUGHT they might become ill) vs. use for those vaccinated but experiencing "breakthrough" disease, does, indeed, pose a problem of medical ethics that should not be "papered over" here.

ikahan profile image
ikahan in reply to EKCekc

A number of posters have stated, with ferocious certainty, that people in Florida are relying on monoclonal antibodies rather than getting vaccinated. This is not at all supported by evidence. The Governor's office in Florida has stated that about 60% of people getting monoclonal antibodies are vaccinated. That's not surprising; most people who are getting sick enough from COVID to require treatment are elderly, and 90% of the elderly are vaccinated.

People in Florida are vaccinated at slightly above the rate of rest of the country. Their vaccination rate continues apace, despite the availability of the monoclonal antibody centers. But even vaccinated people can sometimes get sick from COVID, and monoclonal antibodies are an effective early treatment. Hospitalizations and deaths are going down in Florida; FLorida had 381 COVID-related deaths on Aug 28,, and only 25 on Sept 22. The widespread availability of monoclonal antibodies could be a contributing factor.

cllady01 profile image
cllady01Former Volunteer in reply to ikahan

jacksonville.com/story/news...

Newdawn profile image
NewdawnAdministrator in reply to EKCekc

Morning EK, I woke to your message and in truth found myself rather speechless. Clearly you haven’t followed my posts.

‘You wonder if I appreciate….’ I’ve lived and breathed the American political situation throughout this pandemic with an interest and vigour many Americans couldn’t match. International politics are my interest so please don’t accuse me of denying, ignoring or failing to understand the political and ideological situation in your country. I’m under no illusion about the societal health challenges that political dogma, political ambition and opposing ideological belief systems has had on pandemic management in the States. The States may be one the biggest but is not unique in this and this virus has hit the U.K. with a ferocity relative to its size.

However, like my fellow Admins and volunteers, we have to maintain a degree of neutrality which is frankly frustrating at times especially for the American members most severely and directly impacted. This is not our ‘show’ however. It’s the online arm of the British CLL Support Association which expects content to avoid partisan political dispute whilst still recognising the inextricable link between politics and health care. That is what we are striving to do and it is neither condescending or ‘papering’ over critical issues. This vaccination v MAB debate is playing out on here uncensored and accepted as a valid concern until the name calling starts. It’s surely possible to have these discussions, even with opposing views, without throwing in insults like ‘idiot Governors’ and other personally offensive comments which set the report button on fire for Admins. The politicians may have little respect for each other but we insist on it here.

Newdawn

newyork8 profile image
newyork8 in reply to Newdawn

Well said. We need to respect each other without using insulting language. I would hope we can be civil in our discourse. Nobody has a monopoly on virtue.

newyork8 profile image
newyork8 in reply to ChattahoocheeBoy

Yes plenty of available Regeneron at least for now and at least in S. Florida No cost to patient, no doctor needed.

mdsp7 profile image
mdsp7

I feel strongly that people who refused on principle to be vaccinated should not be at the front of the line for monoclonals. I worked for 8 years in a research lab where we produced anti-HIV antibodies. It was a hugely labor and material intensive process involving live, immortal cell lines. It was intense. When I was younger and also working in immunology research, monoclonals were isolated by collecting the ascites generated by mice whose abdomens had been injected with monoclonal antibody-producing hybridomas. I was told that this was very painful for the mice, and that we had to use our monoclonals judiciously. There are in vitro methods by which antibodies can be made, but even these will probably all involve growing the antibodies inside immortal cell lines that need to be fed something and tended very carefully in sterile conditions. Growing antibodies outside the body is not at all like manufacturing aspirin.

It is very strange to me that people will refuse the vaccine and yet, once sick, allow themselves --and even expect-- to be treated with these costly antibodies. Had they allowed themselves to be vaccinated, most of these people's bodies would have successfully made all the antibodies they needed to stay well. It is a crying shame that their ignorance puts those of you who may someday need these life-saving costly infusions at risk.

newyork8 profile image
newyork8 in reply to mdsp7

But isn't medicine about not making moral judgments? Don't we treat violent felons at scenes of crimes? Don't we treat serial killers in prison. Don't we treat lifelong smokers that get lung cancer? If we start making moral judgments about treatment where does it end?

mdsp7 profile image
mdsp7 in reply to newyork8

Hmmmm. I agree with you that medicine is about healing the sick. And I am not opposed to helping heal the people who refused vaccines. But I don't see why they should get antibodies ahead of someone who already tried to make their own, but failed. Triage is part of the medical system, too.

newyork8 profile image
newyork8 in reply to mdsp7

In my area there is plenty of supply but in areas where there is shortage I suppose some triage is in order. If an ICU bed is occupied by an unvaccinated person and a vaccinated person needs it, should the unvaccinated person be replaced? Tough call. What if the unvaccinated has 3 young children and the vaccinated is aged 75 with no minor children? Should liver transplants be limited to those who never drank if there is a shortage? Should kidney transplants be limited if there is a shortage to those who watched their weight and blood pressure? Interesting questions I would not want to have to answer in a real life situation.

Jonquiljo profile image
Jonquiljo in reply to newyork8

We are talking about medicine here with finite resources! We cannot give these infusions to everyone - as is shown by the mess we are in as we now are running dangerously short for people that absolutely need them (like ourselves).

Not everyone with plaque in their coronary arteries gets a bypass. If we did that, we'd overload the hospitals and operating rooms. It's that simple.

Sojomama13 profile image
Sojomama13 in reply to newyork8

If only that were true…Sadly, medicine is not about using our moral compass in healing the sick. It is about money. How many time have we read on this forum alone the people who do not have access to life saving drugs for cancer treatment because they cannot afford it? How many people, who could benefit from more invasive procedures, are turned down because they don’t have the money, where is the morality or ethics behind that? The real absence of moral obligation is when people refuse to get a FDA approved jab in the arm knowing that by doing so it will save lives, theirs and others. Therefore isn’t not getting vaccinated the ultimate absence of morality?

newyork8 profile image
newyork8 in reply to Sojomama13

Assuming the individual is masked and social distances the risk to others is low. Yes I do believe it is misguided and selfish not to get vaccinated if you will be among others. But pitting the vaccinated against the unvaccinated is very divisive. Unhealthy people use more resources than healthy. Shall we somehow punish smokers, drinkers, sedentary, over eaters? Well perhaps with higher premiums and a share of their increased medical usage. Perhaps that will incentivize better behaviors? What about people that don't use preventive medical screening?

Sojomama13 profile image
Sojomama13

That is the dilemma isn’t it? Wouldn’t it be wonderful if it were so cut and dry, but reality is a far more complicated issue. My post was supposed to be more thought provoking than political. It is like when people believe that the government should be run like a business. Which on the surface sounds great. Until you involve the human side of things and you come to the realization that Dang, We can’t do that because human life is involved. My point is whether you politicize arguments or debate the moral and ethics of this issue. There are no easy solutions.

Daisyinmaine profile image
Daisyinmaine

Happy Monday, everyone. Seems I unleashed a firestorm! I'm sincerely happy for you, newyork8, that you have such ready access to these life-saving drugs. The issue obviously is that many of us (for instance, those of us in Maine) do NOT have ready access. We need a system where there is equitable access, and where immunocompromised people across the board (not just those who happen to reside in FLA) can have at least some assurance that these drugs will be available should we need them.

kc1953 profile image
kc1953

Well, since YOU are unaware that there are any CLLers that may need Regeneron and aren’t able to get it, then that is certainly strong evidence to support your point. Omniscience must be wonderful to have.

newyork8 profile image
newyork8 in reply to kc1953

I wouldn't know.

81ue profile image
81ue

There's a new antiviral pill by Pfizer, known as PF-07321332/Ritonavir , Pfizer launched a combined phase 2 and 3 trial of its product and it is recruiting clinicaltrials.gov/ct2/show...

"The purpose of this study is to determine whether PF-07321332/ritonavir is safe and effective for the treatment of adults who are ill with COVID-19 and do not need to be in the hospital, but are at an increased risk of developing severe illness. "

Hippie77 profile image
Hippie77

I was refused monoclonal antibodies by the nurse at my clinic. Even though having been exposed to cv19 and having CLL. Having gone through the hellish experience of contracting cv19 in January of this year, my antibodies had been relatively high since that nightmare. She refused to even consider it since I had not received my vaccine yet. I’ve been hoping to get the Novavax, but it’s not in our area yet. In many ways , I felt totally discriminated against. How is this any different from those good old days of Jim Crow. I remember as a child , the whites only areas and drinking fountains for blacks and whites. I really don’t like this push for segregation again. My father marched with Martin Luther King innPittsburgh. I’m extremely sensitive to this desire to separate the vaxed from the unvaccinated. We have to be careful and use common sense, but in some ways it’s gone to the extreme on both sides. My heart is heavy and causes me great anguish to see the division being pushed. Apologies for venting. Just a bit confused 😕. I’ve resorted to taking ivermectin (human) as a prophylactic with all my daily supplements. I’m w/w at the moment. They discovered my CLL two months after cv19. Just overwhelmed by the inhumanity of the whole situation. 🥺

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