UPDATE: The FDA has made a new decision July 31, 2021 on the use of REGENERON-COV in that some of us who are considered vulnerable to SARS-CoV-2 virus may now qualify for the antibodies under certain conditions. This certainly is a move in the right direction. The information is contained in this link: https://www.fda.gov/news-events/press-announcements/coronavirus-covid-19-update-july-30-2021

The subtitle of this article is Walking Through the Forest, as much of what has happened in the past year or so has been a lot like being surrounded by the trees, deeply into a rigorous hike, not knowing what direction we are heading. All of the arrows are pointing in different directions.

Since the vaccination process began, those of us here in the United States who have been trying to stay as safe as possible from the terrible virus we call the Corona-virus, have been anxiously awaiting an “all clear” from the medical community on the efficacy of the vaccines or from the American government in general. We have gotten many mixed signals (see our founder Adrian’s article from last year explaining succinctly how dangerous the virus is to blood cancer patients) since March of 2020 and we all want to see hope on the horizon.

Add to that the confusion and misinformation since May of 2021! I was able to find this statement the president had made on June 2nd about how well the vaccines were working, and I also found this one today as of the writing of this article that is very current (7/7/21). We have been given so much “positive” information that when we hear from the various blood cancer people we trust, it immediately may throw us into a panic. We are astounded and dismayed to learn that the current vaccines on the market may not help many of us with blood cancer!

SO WHO IS ADVOCATING FOR US as it appears the vaccine is not really effective (per CLL Society, for example, if you have CLL) and for the rest of us with blood cancer. Still not convinced? Here again, Adrian covers this topic very well in an excellent article summarizing this sobering reality. And we have gotten more sound advice for us to keep masking wearing, even if fully vaccinated, as this should be considered when inside and in crowds outside (thank you, Patient Power for explaining this).

The dead tree you see leaning in the featured image in this post is on the side of my back yard. Last March in 2020, right after I started working from home, a huge wind gust came through and uprooted two huge pine trees. One fell and was subsequently cleared away, but this on hangs one. It is now dead. It is held up by the trees around it, although it might take them down when gravity does its thing. I live in fear that it will fall on my dogs or me, or both. It belongs to the county park next door, but when it falls, it will fall in our yard (and probably take out our peach tree). We have told them about it, but they will wait for it to fall since there are no buildings nearby it. Yet every day I look at it with dread, wondering when it will come down, which causes a bit of anxiety. Just for kicks, here is a silly article about the odds of being killed by a tree or branch! Yet it is possible. A person from our Blood Cancer Uncensored Facebook group actually knew the person from this news bit!

So all of us are waiting. We are trying to be strong and behave like these things are not concerning. Both of the main countries represented by our group (the United States and the United Kingdom) have “gone on” without us, as if there is no longer a Corona-virus, so to speak. It is surreal. I personally feel like I have been cast aside and forgotten for being a blood cancer patient, who did not respond well to the Pfizer vaccine (see these facts about vaccine efficacy). I have 1.5 antibodies; that certainly does not seem like enough to fight off a deadly virus. I just heard this message called “The Mark of an Exile” by TJ Koleoso of Jubilee Church in London, which speaks volumes to me. I feel like I have been sent to exile, off to my corner, all alone, not allowed to play with the other children in my neighborhood. I feel like we have all just been….forgotten…

What can we do as a body of blood cancer buddies? First of all, keep wearing your mask, and stay away from crowded areas, as much as possible.

But most important of all: let’s get the word out that we have been left out of the equation. That the vaccination process needs to include all people, not just the healthy. Educate people! The vaccines do NOT work for everybody. We need to be a loud voice, standing together in solidarity. Call your congressperson’s office, circulate a petition, and write letters to the major drug companies and let them know how upset you are about “everything going back to normal” while people are still being impacted by this deadly virus.

Our founder, Adrian has also researched ways that are available to help us all (see featured article below, for details)! First of all, you can see if you can get your antibodies tested. I have read that Labcorp, which appears to be the lab that does quantitative antibody testing is charging less than $50 to be tested if it is not covered by your health insurance. Find out if you have built up antibodies against Covid!

The next step is to beg the drug companies and our government leaders to consider something that has proven to work. Start a petition! Let leadership know that this is “hot topic” that needs to be addressed. The solution? To provide the monoclonal antibodies to all who test with low numbers of spike antibodies. What are we waiting for here, I have been wondering? This is proven to work! Also, know that there is a difference between Convalescent Plasma and Monoclonal Antibodies, but both are excellent at combating Covid 19 infections. UPDATE on 8/8/21–see this press release about booster shots: https://www.reuters.com/world/us/us-plans-give-extra-covid-19-shots-at-risk-americans-fauci-2021-08-05/

Finally, did you know that in the United States if you are considered to be of the “vulnerable” health population that you can get monoclonal antibodies if you are infected with covid19? This is a valuable link you should save in your email. This does not mean you must be hospitalized. You just need to know to request it. Or your loved ones to request it for you!

In conclusion, we are a mighty force if we work together. Perhaps one voice will not be heard but a multitude comes through like a mighty river! Please keep your eyes open for opportunity to let our voices be heard.

For Further Education

Is a booster in the works? If so, will it help us? See this resource on how well the vaccines work in blood cancer patients and also the controversy of moving on to new vaccines before the rest of the world is protected.

What are the odds of blood cancer patient getting Covid (in two separate articles)?

My simple 4 step plan to save lives of those with #bloodcancer and other #immunocompromise.
1. WARN US some of us won’t respond to vaccines
2. TEST US for antibodies
3. PROTECT US from transmission
4. TREAT US to reduce the severity of #COVID19 infections https://t.co/g8YBohd6gO

— Adrian Warnock (@adrianwarnock) July 17, 2021

All photos shown are property of Lisa Wiest