I was exposed to Covid (outbreak at my grandson’s kindergarten, say him Monday afternoon when he had no symptoms, fever started on Wednesday) and even though it us FDA approved to give me regeneron- they won’t due to the hospital internal policy - what chances would i have if u shopped around?
Ruth
Depending where you are located, I think you could have some luck if you shopped around and had some help from your MD. Did they say why is it there policy? Wondering if they even have monoclonals there, or if they only give them to high risk, or to those with positive test. Did you tell them you are high risk? It might be worthwhile to get tested every day for a while. If you remain negative great, if you turn positive should be easier to get antibodies. The Binaxnow home test is pretty easy, if you can find it. Call your MD for guidance. Good luck Ruth.
Hi RuthBorch,-
Have you contacted your CLL expert doctor to ask for help / guidance in getting this clarified, it does not make sense. Getting early treatment is very important so don't be passive, get on the phone and "shop around" if you must to get the infusion.
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In some places like Florida, and in my hospital in NYC it only requires an assertion that the patient is immune compromised and was exposed to someone that tested positive for COVIG-19 .
healthunlocked.com/cllsuppo...
healthunlocked.com/cllsuppo....
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Len
Yes - …
Ruth, I think your chances are excellent if you shop around and I would beat the drum hard if I were you.
You might even try a walk in clinic. I would bring some medial record showing you have leukemia. Then I would explain to the doctor that leukemia is a cancer of the b cells that make antibodies and that those of us with cll are in the highest of the high risk groups and that you consider it a matter of life and death for you to get antibodies that your body cant make.
You might even bring a copy of the new EU order, many doctors and hospitals are not aware of it. They might think you have to have covid first to get monoclonals and do not understand that leukemia patients can get monoclonals just upon exposure.
I doubt any hospital aware of the new EU order would have an internal policy keeping an exposed leukemia patient from getting monoclonals, they just dont understand the order.
I had an infusion this morning. I had to walk one of my gp doctors through the new EU, explain to him I cant make antibodies and inform him of the 35% mortality rate with covid and cll on some studies. Once he understood that, he immediately ordered them for me.
We have to be proactive and cannot assume our local doctors understand how dangerous covid is for us and how we are absolutely entitled to mab infusions on exposure to covid.
This is a problem everywhere. Some doctors have no clue what we are dealing with. This is also a reason to be very careful what you allow them to do. Always, and I mean ALWAYS, check for contraindications on any medications they give you. I had a oncology urologist prescribe me something the other day that was a "Extreme High Risk" contradiction to my Calquence, even though I asked about it. They just don't know what to do, most times.
Were you exposed to Covid? How did you get the infusions?
Jeff, Do you by any chance have a link for the EU order?
Elle
Here you go Elle:
regeneron.com/downloads/tre...
Thank you!
You are welcome. The "post exposure prophylaxis" section is the new part of the authorization that allows high risk people to have mab infusions after covid exposure but before a formal covid diagnosis.
Hi RuthBorch, -
sllincolorado reminded me that wizzard166 posted this info 11 days ago healthunlocked.com/cllsuppo...
there is a database of the sites that can give you an infusion of the Regen-COV- use this link covid.infusioncenter.org/
and it will ask your location and show your the sites near you
I have the same issue here in Alabama. I provided all the EU information to the Director of the Cancer Center. She had no idea. I spoke to my local oncologist about it, and he is firmly, and I mean firmly, in the camp that you will need to be Covid positive first. I just flatly asked , wouldn't it be prudent to be proactive about it, like my monthly IvIg infusions? Still, no go unless positive.
Yeah - i have been calling and they say i need a positive test first. Fortunately - no symptoms so far and if my 2 grandkids had it and recovered … and their vaccinated parents don’t get it - i feel like my bubble is relatively safe … so will wait and see.
Yes, I just don't understand it, though. The EU specifically states "Exposure", not confirmed positive.. I do not understand that.
Just heard back from the Director of the Cancer Center. Same answer, again. Will not administer before positive test. The EUA is an option, not a mandate for patients. And now, our state is being put on allocation for the antibodies. LOL.. Meaning, 30% less availability.. Just unreal.
Ruth
There is another post today along with yours, and that post gives a link to a site that locates the infusion centers.
I have another link to share, which I'll also put up on reply to the other post, and here it is
protect-public.hhs.gov/page...
I'm confused by your local hospital's policy. One of my local hospitals called Boca Raton Regional Hospital has a phone number that connects to their ER, and special Nurse Practioners take the phone calls from those needing Regeneron or Monoclonal Antibody Infusion. They said I qualify because of having CLL and being Immune Suppressed, but the additional qualifier is that I either tested positive for Covid or was in contact with anyone who did test positive for Covid.
If you are in Florida, there are now 26 tent type clinics set up throughout the State for these infusions by a private company. Those infusions are free.
Carl
I think Florida is it’s own beast
Not sure what that means David. Is that a positive or negative comment on the 26 sites set up by Maguire Corporation?
Personally I'm not sure if I can trust those sites, so I decided to call my local hospital to gain access to the infusions. The 26 sites are in tents in parks, and they are giving the infusions for free to anyone. That sounds great, but I'm just not sure if I can trust them fully for quality of whatever they are using and also safety in terms of the infusion process. I have no reason to doubt them, but something lingers in my mind to make me wonder. I figured I'd have to pay through Medicare Part B for the hospital given infusions, but I didnt ask them.
Our CLL specialist said NOT to go to Emergency, as they would only ness things up by imposing bureaucratic “procedure”, but to contact him immediately. This was a couple of months ago and we were only talking about actually being symptomatic: the idea of prophylaxis wasn’t as prominent yet.
COVID!
Covid
Covid
