Ask the Doctor Question:
Why can’t the cancer centers put out an email explaining that certain patients might be at risk? The patients can call their Doctors and the Doctors can prescribe an antibody test. Also, why can’t it be on the news or media???
Answer: These are all great ideas, and you are asking the right questions! CLL Society is in the process (behind the scenes) of reaching out to cancer centers and asking this very question. Keep in mind that cancer centers generally serve all types of cancer patients. CLL is the blood cancer that is showing the worst response rate to the vaccine, and most likely only a small percentage of each center’s patients have CLL. We are not making excuses, but just playing devil’s advocate. They may have the viewpoint that they don’t need to put out a sweeping message to everyone they care for, especially in the midst of so much vaccine hesitancy in the US. We get many inquiries even from CLL patients saying, “If the vaccine won’t work, then why should I get it?
As for the press, we are working very hard on that subject as well. There has been press on it, but not enough from our point of view! Here are some articles that we can share with you that have made it into the public limelight:
We are working on that. Dr. Koffman has literally spent hundreds of hours on the phone (even with international contacts) over the past month, literally beating the pavement to try and figure out if CLL Society can somehow collectively join with other cancer organizations to help sound the alarm. There is no easy, quick answer. It will require lots of manpower, joining with others with more resources, and unfortunately a lot of time. We are also working on other alternative therapies that might be the answer for CLL patients gaining some form of true protection-such as monoclonal antibodies that are currently sitting on the shelf, awaiting emergency use authorization to give to people like us PREVENTATIVELY. That is also one of Dr. Koffman’s hot button issues right now that he is working hard on to force change.
Antibody testing is controversial even amongst CLL experts. Some think, what does it hurt for a person to know their antibody status, some think there is great psychological value to knowing, and some think because the results won’t change the patient’s plan of care, there is no need to order them.
We realize that none of the above leads to a solution. But we want you to know we are working hard on the problem!