I suppose you are wondering what I mean by that title. Well, I’ll tell you!

Two years ago I cannot even begin to describe how I was spending my time. I know in February of 2020 I was wrestling with the realization that I would have to begin treatment for my CLL soon as I had increasing fatigue and prominent lymph nodes popping out all over, but mainly on my neck and base of skull.

And the Covid-19 pandemic was just creeping onto the scene.

We had a trip planned to New Orleans during Mardi Gras. We survived it. I didn’t contract ANY illnesses from walking amongst all of those people, which is just a miracle.

But I was slowing realizing that (even though I’d been diagnosed with CLL in 2017) I have a condition that doesn’t mix well with a deadly pandemic virus.

Life changed drastically mid-March 2020 as things buckled down. But my CLL didn’t take a hiatus or disappear, just because of that. I started my treatment in June of 2020, forcing me out of my cocoon and over to the cancer center for face to face visits and a CT scan when I really preferred to just stay safe at home.

But I fell in love with working with the Blood Cancer Uncensored group and have really enjoyed growing in knowledge and friendships. It has become a great passion to be a part of such a great work!

So in 2021 with the vaccines and the cures and all of the things they came up with to assist in recovery of Covid, I became a sort of renegade. I became passionate about finding out how we can get life-saving treatments against this horrible virus.

As most of you know. our own Adrian Warnock suggested in 2020 that Monoclonal Antibody (MABs for short) treatments might be life changing for those of us with compromised immune systems, and he enrolled in the Provent Study, which was the baby stages of Evusheld.

In the meantime, other MABs were on the scene, being used in emergency situations for post-Covid-exposures. Then at the end of July 2021, the use was expanded to people who might be exposed regularly. Some areas jumped on this and used the treatments widely, other areas continued to reserve it for emergency use. But we in the blood cancer group were slowly learning that these treatments might be the difference between life and death should we become infected with Covid.

Fast forward to December 8, 2021. The Provent Study is wrapped up and the name Evusheld is born. On that date, the FDA approved it under Emergency Use Authorization for pre-exposure use only in the United States. It is a long-lasting MAB from AstraZeneca and it comes from the medical world realizing that some folks have little or no efficacy to the Covid-19 vaccines. See: https://www.fda.gov/news-events/press-announcements/coronavirus-covid-19-update-fda-authorizes-new-long-acting-monoclonal-antibodies-pre-exposure.

Because of the work we do here at Blood Cancer Uncensored and our members’ diligence in keeping on top of current events, many of us were on the look out for places that would give those of us with immune compromised health the Evusheld treatment. Only 700,000 doses were released by the US government in the first batch. On our January 1st BCU weekly chat on Zoom, we discussed ways we could reasonably handle this situation and be a “squeaky wheel” of sorts with our providers to get our names on the quickly growing waiting lists. I had checked with my cancer facility on January 20th and after some research, found out that they had so many patients to serve that they were doing it by a lottery. I assessed that it could take months to get through that lottery (and I have never been a very lucky lottery player anyway). I had attended a meeting with my friends from the CLL Women Strong group (founded by Susan Andrews Kanoff and Michele Nadeem-Baker) on January 25th and upon reflection following the meeting, it occurred to me that we would need to be a little savvy in some areas in succeeding with getting ourselves this treatment sooner than later.

I started with this horrible website to figure out which places within perhaps an hour a half drive from me… in the rural areas… were sent Evusheld: https://healthdata.gov/Health/COVID-19-Public-Therapeutic-Locator/rxn6-qnx8/data?fbclid=IwAR3mJmSE4Y4fPWjCdzzcFgljSa67fhwmViCGwGOquRGpJlgDzEPG4sIoZC4 . I compiled a list of about five hospitals to call. I called one and hit the jackpot. It was January 27th. I found a hospital within one hour of driving who had all 48 doses that they had been issued originally, and they were willing to share.

With the coordination between my cancer hospital and the other facility my appointment for Evusheld was made for February 15th. I am happy to report that other than some fatigue and soreness at the site of the shots for a few hours following the treatment and perhaps a little stomach ache, I would not even know I had two shots in the bum a week ago!

So, how am I just an ordinary person?

Something phenomenal has come about from my “squeaky wheel” asking about Evusheld. I happened to see a local allergy/immunology specialist as my good friend Seymour Brown has suggested, and my first appointment was February 11th. This doctor has spoken recently on several groups I follow about how to live during a pandemic with a compromised immune system, and I talked to him about our group. As a result I had his email address so I could book him for a date with Blood Cancer Uncensored. Then I remembered on Tuesday while I was waiting in that hospital waiting room, that the head pharmacist at the facility I was getting Evusheld at wants to help other facilities with their shortage. Having learned that Dr. Mustafa is in charge of the Evusheld distribution for his hospital system, I sent him an email that said, “Do you want 47 doses of Evusheld”? The answer was a resounding yes and there was some confusion later on as some pharmacy head from that big hospital system emailed me and asked, “We want your Evusheld; can we come get it via courier?”

I had to call that person to explain that they needed to get in touch with the other pharmacy to work out details, and she said, “Who are you, then?” And I replied, “I’m just an ordinary person, advocating for folks in need!”.

I can only make suggestions to you on how to handle this difficult situation. I know quite a few folks have been successful in getting Evusheld treatment and others have medical providers who have no idea what it is. I can only share my story in the event that you are able to do similar research and find the Evusheld. Because, indeed, it really has become a battle of wits for many of us, to get this potentially life saving treatment. Best wishes to you all.