Has anyone living in California been successful in getting access to Evusheld? I am currently being treated at Stanford and they state that Evusheld is being prioritized for "solid organ and hematopoietic stem cell/CAR-T recipients" by the state of CA. When I check hospitals in other counties, they do not make the same assertion, but also seem to focus on transplant patients. Wondering if I should start looking out of state.
Evusheld in California: Has anyone living in... - CLL Support
Evusheld in California
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trackrat
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Have you been tested to see how you responded to the Covid vaccinations? The Leukemia and Lymphoma Society does this testing in the US if you are willing to share your health data as part of their clinical trial. That would be my first step.
Best,
Mark
I am part of the LLS study and have shared my results (negative response) with Stanford.
Oncologist appointment on Monday, Evusheld shots today, ( Saturday ) Florida
I would not be surprised if California was dictating how Evusheld is dispensed. I am also a Stanford patient (well --- a former patient of Dr. Coutre with no real path to a permanent physician). Stanford gives me the same line about Evusheld as you do.
You can pay your way for a test from LabCorp or Quest. I think that this way - the result is not included on your medical record. Personally I don't trust the medical system to have this information about me.
My attitude toward Evusheld is that it isn't a bulletproof vest for Covid. You can get Covid , especially omicron or BA.2 even if you are "Evushedled." Finding an odd dose somewhere in another state is possibly a lot of empty work -- you have to have a new set of Evusheld shots every 6 months. Also, we don't know if the next variant will break through Evusheld's protection even more.
My goal is to wait another month or so when there are lots of doses of Paxlovid on the shelves and have a PCP prescribe me one before I get Covid. I am trying to find a PCP now who will do it. With a course of Paxlovid of my own, I can feel pretty confident that I could snuff out any infection that I can get. I also think it's a lot more "variant-proof" in the future.
I just thought I'd tell you my thoughts on this - as not only is Evusheld less than 100% protection, but it is next to impossible to get. Our country seems to want to move forward and leave the immunocompromised and elderly (over 60) in the dust. So maybe it's time to take matters into my own hands.
Whatever you do - good luck.
Jon:
Why is it a problem for your doctor and the medical system to know how you responded to the Covid vaccines? I went through the LLS program and when they sent me the results I sent a copy to my doctor so it would be included in my records.
Real simple. If they see you with ANY Covid immune response, they use that to deny you treatments as needed.
No test results = Test results zero.
It’s just easier that way. It’s not like I have someone like Dr. Coutre looking out for me.
Sorry to sound cynical, but Stanford is treating Coutre’s former patients like they are a burden. I’m not the only one to feel this way.
Hello Jon:
The way it works on the east coast is you can’t access Evushld treatment without being in a vulnerable position (stem cell transplant patients for example) or show no response to the vaccine (test). I think about Evushld as I do IVIG, it’s available but in such short supply only those who truly need it to stay safe are eligible to receive the treatment. I recommend that you join the LLS study so you are armed with facts.
I’m sorry the transition from Dr Coutre’s care has not gone well. He was a giant in the field so replacing him will take time but you need to be accepting of his replacement. Remember, Stanford is a world class institution and the best of the best work there. It will get better.
Be well,
Mark
On the side note of being a former Coutre patient, the issue is not that we are not accepting of the replacement Dr, it's that there is no replacement Dr. Stanford is obviously struggling to compensate for the unexpected loss of Dr. Coutre. I was told that I would be seen by different doctors for a while until they sort things out, which basically means they are trying to spread Coutre's patient load across the others doctors. This ended up creating a scenario where we went from the personalized treatment we felt from Dr. Coutre to the doctor of the month club. I don't necessarily blame Stanford, it is what it is, but it's definitely frustrating.
Frustrating, impersonal and you'd think that Stanford could do better.
Have you received the Evusheld yet? I just got mine in Oakland.
ElMaga I have an appt at Stanford this coming week. Looks like supply is rolling into the Bay Area.
Thanks for your post. I was trying to think of how to explaine the shortage/prioritizing of Evshld whithout souunding unkind. You did it very well . I hope folks understand.Thanks M
My husband (we're in Kern County, CA) received Evusheld because he is currently taking Rituxan. Our local county hospital has the main supply of Evusheld. We asked his oncologist, who called the county hospital that has the primary supply of Evusheld here and provided my husband's basic info. Then he was set up with a telehealth appt. with a Kern Medical Center doctor who vetted him. Once approved, he received an appt. to get the shots. After the dosage was upped, he received a call from the county hospital to ask if he wanted the make-up dosage. He has had the second telehealth, and is now awaiting the make-up appointment. It's fortunate our local paper had a story about Evusheld availability the day after I asked his oncologist about Evusheld (he said he didn't know about it, but would look into it.) After hearing nothing from the oncologist for a week, I mailed a copy of the article to him and then my husband got word from a nurse that they'd be making the arrangement to get him on the Kern Medical list. So getting a dose may depend on providing your doctor with the contact info. Apparently doses are sitting on shelves in some areas, according to this article. npr.org/sections/health-sho...
Edit: this morning my husband got the make-up dose, except the nurse gave him a full dose (double what he should have received.) Hope that's not harmful. They figured it out while he was waiting after the shots. He has a number to call in case of problems.
I hear you about Evusheld not being 100%, but I'm now 0 for 4 on vaccine response according to LabCorp, so I'm willing to try other options. I would drive to Reno or even Phoenix every six months if I had to (from the Bay area). My life is on hold and I want to get some of it back.
I'm in the same boat as you with Stanford. Let me know if you find a PCP that will pre-prescribe Paxlovid.
I understand the feeling. Any immunosuppression and your life has to go on hold. It stinks!
I just feel like Evusheld is not the “Shield” that people make it out to be. I’d still be careful and wear masks with Evusheld. You still have to live life on eggshells. The next variant may whiz right through its protection. Who knows?
Given that, I’d rather be careful, mask, etc. and deal with the Paxlovid situation like I described earlier. I keep a number of Covid tests at hand. If despite my precautions, Covid happens, I grab the Paxlovid.
None of the two scenarios are easy, but getting Evusheld is the harder of the two. Up here in the Bay Area, most of it is spoken for, or being held onto for the magnificently super immunocompromised — i.e — not us. With 20 million courses of Paxlovid on order - it maybe easy to grab one — that is if you can find someone to prescribe it.
One thing I can be sure of, is that Stanford is not a huge help these days.
That is discouraging. Have they given you any timeline on when Evushld might become available to you? I do think by being armed with your test results you have moved up the list. On the east coast, all of the cancer patients at the hospital I’m seen at were notified that patients would be contacted when the treatment was available. Basically, the message was: we will call you don’t call us. So I’m sure it isn’t Stanford. Rather, there isn’t very much of the treatment available anywhere. Given the scarcity of the product, I’m not sure how successful you’ll be be going to a state where you don’t have any medical representation. I’m sorry to hear about your situation but I don’t think it is any different elsewhere.
Best
Mark
Evusheld retains its activity against variant BA.2
medpagetoday.com/infectious...
Neutralization of SARS-CoV-2 Omicron BA.2 by Therapeutic Monoclonal Antibodies) biorxiv.org/content/10.1101... ( Thanks to GardeningGirl )
Hi Jon,
I did have my immunologist prescribe Paxlovid for me to have on the Shelf in the event that I did come down with covid, since the time between symptoms and treatment is very short with that drug. However, when I tried to get the prescription filled I was told that, at least here in Oregon, it had to be prescribed by a certain type of doctor that was certified to prescribe Paxlovid, in one of the clinics that was also certified. In addition to that, the requirement here is that even with a prescription, it must be accompanied by a lab certified positive covid test. As a side note, I was able to find a couple of pharmacies which had it, but would not release it with the prescription that I had.
So much for having it available so that I can take it in a timely manner.
So far my attempt to obtain Evusheld through my pcp, oncologist, and my immunologist has not been successful.
Tom
That’s terrible. Pharmacies should fill prescriptions according to Dr’s orders. Sorry to hear of your situation. What do they do —expect you to come into the pharmacy with Covid and bring your positive test?
That’s nuts!
I tried to get our PCP to pre-subscribe Paxlovid for my husband (CLL, on Rituxan and Venetoclax), but he declined. His practice wasn't even prescribing Paxlovid to people who've tested positive! I questioned that, but the nurse who returned my call said their practice isn't prescribing the treatments and to ask his oncologist. (That was in January that I asked. Maybe they've figured out what Paxlovid is by now.) Since then, my husband has been able to get Evusheld after referral by his oncologist. We're still isolating (I do the shopping.) But if he gets the make-up dosage of Evusheld soon, I think we both might get haircuts for the first time in a year.
I had a positive Sars Covid IGG & IGM test prior to my appointment for Evusheld. apparently, recently I had asymptomatic Covid or Covid exposure. My Evusheld was postponed 2-3 weeks and I am having a repeat test then too. I have had 0.4 negative results on LabCorp except for the last one which was 0.8 and negative Sars Igg & IGM in November.
I am taking Alacabrutinib. I just had my 4th Covid vaccine.
I very much agree with HopeME. I would seek antibody testing as that will tell you exactly what you have or don’t have and it will serve as evidence for your pursuit of the Evusheld. I am being tested via LabCorp. I have had 3 full Moderna shots and 2 Pfizer with the third one coming in April. I have had several anti body tests before and after most of the shots and the first three antibody tests showed no antibodies from the vaccine and zero from a direct infection. Then I started testing a hand full ending up with 32.4 from the 5 shots. On the 4th antibody test and each one that followed I tested positive for antibodies from a direct infection which blew away two of my doctors. I also receive IVIG every 4 weeks and since May of last year antibodies have detected in the infusion I receive. Now, I never tested for Covid as I never had any symptoms, however, I had had a 6 week nasal issue involving blood clots the size of small clumps of lived about an inch long and both doctors said that was the first they had seen Covid present in that fashion. But after my issue they had 3 other patients deal with what I had and they tested them for Covid and all 3 tested positive.
Now my plan is after my last Covid shot I shall wait until the Evusheld is more readily available and shall pursuit that. Right now I feel I have a tiny bit of protection but they tell me to continue to act as an unvaccinated person.
I wish you well in getting the Evusheld and I have been told they feel come Fall it will be more readily available and that would see me thru the late fall early winter season when they feel Covid will be a stronger issue.
Panz. 💕🙏🙂☘️
I wish you luck with the 6th shot. I assume you just have two separate vax cards to get to 6?
Lucky you to be able to get that many vaccines. I live in GA and the Dept of Health stopped my fifth vaccine shot, ordered by my oncologist in December because they were following strictly the CDC guidelines. I had the vaccine appointment lined up with our local rural hospital, but they had to get D of H approval, which was denied. We have a tracking system here in GA and so my record pops up anywhere. I tried in a neighboring state as well, but because my record popped up a chain pharmacy wouldn't give me the fifth vaccine. What state do you live in please to be able to get that many vaccines. If close, I will travel there!!!!!
That is incorrect. There could be state guidelines but, Evusheld is not prioritized by the state of California. The state does not decide who gets Evusheld, and who goes without. Part of the problem could be you are being seen at a transplant center.
I could not find Stanford guidelines. But below are UCSF guidelines, which are similar to many other California Health Organizations guidelines.
Immunocompromised host/Not expected to mount an adequate immune response to complete vaccination
•Active treatment for solid tumor and hematologic malignancies
•Receipt of solid-organ transplant and taking immunosuppressive therapy
•Receipt of CAR T-cell or HSCT (within 2 years of transplantation or taking immunosuppressive therapy) •Moderate or severe primary immunodeficiency (e.g., DiGeorge, Wiskott-Aldrich syndromes)
•Advanced or untreated HIV infection
•Active treatment with high-dose corticosteroids or other drugs that may suppress your immune response •Other diagnosed chronic condition with severe level of immunocompromise.
Maximally vaccinated. This means completion of the following:
•mRNA: At minimum, 3 doses required (for initial series, 3 full doses preferred; 2 full doses plus 1 booster dose acceptable) •If <5 months since dose #3, the patient is considered maximally vaccinated
•If >5 months since dose #3, the pt is eligible for and must receive dose #4/booster to be considered maximally vaccinated
•For newly immunosuppressed patients who received vaccination prior to becoming immunosuppressed (i.e. new SOT, HSCT, CAR-T treatment), maximally vaccinated includes 2 mRNA doses and a third booster dose 5 months later (if eligible by timing)
•J+J: Initial shot followed by booster (mRNA preferred) 2 months later
•For details: cdc.gov/coronavirus/2019- ncov/vaccines/recommendations/immuno.html?s_cid=10483:immunocompromised%20covid%20vaccine:sem.ga:p:RG:GM:gen:PT N:FY21
V.5 UCSF Health Guidance for Adult COVID-19 Pre-Exposure Prophylaxis (passive immunity) Author: Adult COVID-19 Monoclonal Antibody Use Task Force
1.25.2022
Eligibility for Monoclonal Antibodies for Pre-Exposur
The Stanford statement is here: stanfordhealthcare.org/disc.... The statement attributes the restriction to both California and Santa Clara county, but maybe it's just the county. Thanks for the info.
Ok, I read the Stanford Statement, which you posted the link too. I imagine there is an updated statement/ guideline for clinicians. The statement in the link, is just wrong. That is not correct. The State of California has not limited the use of Evusheld to just solid organ transplants, and what ever the wording was on the second part of their statement.
The message that I received from UCSF was that you need three vaccines and two negative antibody tests to be qualified. You need to show the proof that vaccines didn’t work for you.
That seems reasonable. Too bad it is different all over the country. Definitely not fair, how it is doled out.
Hi trackrat, I heard that Stanford already released Evusheld to hematology patients on February 8. Hope you are able to get it soon.
Interesting. As Jonquiljo as mentioned, those of us that are former patients of Dr. Coutre are finding it hard to get anything out of Stanford. I have asked them multiple times and have received a mild "not at this time" brush off.
I had virtual consultation with Mr Michael Conte (PA of Dr Coutre) on February 8 and he mentioned that Evusheld was available for us and he could order for me since my Labcorp results were minuscule after 3 shots. I’ll have to take a rain check since I had 4th shot on February 5th.
Thanks. Looks like my check-in with Stanford next month is with Dr. Conte, so I'll ask him then.
Awesome! He is very knowledgeable and I was very impressed by his dedication. He remembered my situations very well (including name of my rheumatologist) and was ahead of me in my blood tests orders. Hope you have a positive experience with him too.
I am moving tomorrow to be closer to Stanford. The day I had my first virtual appointment with Michael Conte was the same day Dr. Coutre passed away. I was very impressed with Michael Conte’s knowledge and look forward to my next appointment with him in May.
Thank you Schubert1870 for chiming in; I felt exactly like what you described. I used to “fear” my appointment with Dr Coutre as I wasn’t sure how to express myself but Mr Conte seemed to be able to put me at ease, Also, the duration of the session was half hour instead of 10 minutes.
Correct, at Stanford they started only with solid organ and hematopoietic stem cell/CAR-T recipients, but from this week it is open to other type of patients without antibodies. They asked to do IGG test and CBC differential.
I’m treated at Mayo in Arizona and was offered Evushield as a CLL patent. I’m getting it this week - no antibodies with the Pfizer vaccine but did make some with Moderna.
I’m in Maryland. I asked my oncologist about Evusheld. He said it is ineffective against the new strains of Covid.
I'm glad I'm in NM. I didn't have any problem getting evusheld. Maybe it's because I didn't have any antibodies after 3 covid shots.
I am in California. I received Evusheld about a month ago. I have Kaiser; my Dr. called and said they had a limited amount and because I was on VO and hadn't been boosted I was eligible to get it. I didn't have to do anything but go get it.
We're here in California, too. My husband was just told this week that an order was placed at our local Dignity Health hospital for him to get Evusheld. His oncology center was hesitant at first not as to eligibility (he's had 4 shots and negative antibodies tests each time). They wanted to assess any cardiac risks and order as appropriate. We asked for it a month ago. Now to see if the hospital has it...
I received my two shots two days ago in Sacramento at Sutter Health. To say my journey to receive Evusheld was a challenge is an under statement. My Dr. at MD Anderson (TX) could only write a letter of recommendation to my local Oncologist (CA) who as per usual was clueless ( had no idea what Evusheld was nor was he willing to write a prescription). I then took it upon myself to contact hospitals in a five county area that reportedly had Evusheld only to find out four of five hospitals had no idea of what Evusheld was or where to connect to within their own hospital. Finally, I came to the conclusion I had to find a champion that was willing to care almost as much about my life as I do ( anything less should be filed under malpractice). I called my GP (Dr. Luceno), a young Doctor who was interested in knowing more about CLL as well as Evusheld. After asking me several questions he said the magic words, “Let me see what I can do”. The next day his assistant called and asked more questions and made me smile when she said, “I’m a pit bull on a pant leg and I won’t let go until I get this done”. My kind of hero! Two days later Sutter calls and invited me to get my Evusheld shots. Thank you Karina and Dr. Luceno! Good luck in finding a Champion . Be a pit bull!
That was my experience--neither PCP nor oncologist knew about Evusheld when I asked in February. Fortunately an article about local supply appeared in our paper a day after I asked my husband's oncologist, and I ended up mailing it to him when I hadn't heard anything from him in a week. Husband is now awaiting the make-up dosage.
Here is where I got Evusheld shots without any problems. It's in Chicago Metro. maybe they can direct you to the right facility in CA.
Elizabeth Ghera APN FNP BC
Metro Infectious Disease Consultants
Research Department
901 McClintock Drive
Burr Ridge Il 60527 (Monday, Thursday, Friday)
Ph: 630-654-4201 630-590-2819
Metro Infusion Center
11036 W 179th St
Orland Park, IL 60563 (Tuesday, Wednesday)
Ph: 630-995-1488
I received the Evusheld injections from my oncologist in Santa Cruz, CA on 1/27/22. I have been corresponding with her and sending her proof of my 4 negative responses to the Covid vaccinations from LLS study. Do you have a local oncologist? Does your local hospital have any Evusheld? I am a former patient of Dr Coutre too and since I am not in a clinical trial right now, Stanford asked if I could go back to seeing only my local onc/hem.
Peggy
Approach in NYS seems to be different. I live in Buffalo, NY, and have an excellent CLL medical team an hour away at Wilmot Center in Rochester. I'm on W&W, and my LLS study results last year said that I did have a response to the vaccine (>2500).
I was given information from a fellow CLL Society support group member that Evusheld was available through a Rochester immunologist/allergist who had spoken to our group in October. I contacted him and was scheduled within the week. I had the shots on Monday and they said the distribution in our state allowed for a reasonable supply to their office. They were actually seeking eligible people to use these, and so put out the word to our support group.
I originally had a concern that I should be low on the list if there's a short supply, because I've had 4 Pfizer vaccine doses, a measured response to the vaccine last spring, and am not highly symptomatic on W&W. But I was assured I was eligible, and my CLL doctor and the immunologist all encouraged it was a wise thing to do, given the uncertainty surrounding the Covid response among those with CLL. The more protection the better, I guess.
You make me feel quite fortunate to have this abundance in upstate New York. The inconsistent messaging and distribution of things these last years has been pretty tough to take, hasn't it?
Best to you.
Lynn
My CLL specialist at UCSD Medical. Ordered it for me. I had it on Friday. I have NO immunity.
There was no problem in getting it.
N.M.
The most likely way to get it as a CLL patient, is to go to the ER. I'm not proposing that we abuse the ER (but please be "sick"), but someone I know with CLL went to Stanford ER & got it. Another I know with CLL got Covid, went to the VA & got Paxlovid. That unfortunately is the best shot at getting these new drugs.
I may be wrong but I have the idea that Evusheld was not distributed to the states taking into account population ( or least not proportionaly). It seems to be easier to get in state with a lower population. California has a population of around 40 million and large medical centers that do transplants and have cancer centers have not seemed to get near enough to go around so it is still being rationed carefully. I have used the link that I saw on this site to check on how supplies are arriving. It does seem that supplies are increasing slightly. Typing in the city or county name into the search helps find how much is available locally. healthdata.gov/Health/COVID...
I’m scheduled for Tuesday, at Kaiser So Cal.
If you have not found a place keep trying. It is starting to be at more Locations,
I dint have it handy but there is a website showing all antibody treatment centers in the USA,
I got mine at UCSD since I am on treatment on a clinical trial,
Be well,
Hoffy
Per our Pinned post healthunlocked.com/cllsuppo... this locator can assist US members locate Evusheld
healthdata.gov/widgets/rxn6...
Neil
This thread really has legs. Thanks for the responses all. I'll try again with Stanford at my next checkin and see how it goes.
New Mexico seems to have plenty unlike the SF Bay area. koat.com/article/immuncompr...
To follow up on this thread. I contacted Stanford and was able to make an appointment to receive Evusheld. I received the injections last week and other than mild soreness of the injection sites, there were no side effects.
I received Evusheld in Santa Monica without any trouble at St John’s, where I’m being treated for lymphoma.
I was contacted by my medical team at PAMF (Sutter) and since I've been diagnosed since 2020 with no symptoms while having regular blood work done they want me to have the Evusheld vaccination in addition to my 3 boosters. I will be meeting with my primary care physician this afternoon to answer my questions and assume if I want move forward arrange the shots.
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