The pull of belonging is strong. The sense that your own people are more important than other people. Others vs. Ours. Especially in a time of fear.
BCG is a vaccine for TB, used worldwide historically, but since TB has been controlled in some countries, limited to a much smaller number of countries today. India is one where every baby is vaccinated with BCG.
Oddly, it is also the drug used to treat stage one bladder cancer. However, the drug is instilled intravesically, inside the bladder itself, instead of injected just under the skin. It is not a systemic treatment, so it tends to have fewer and less serious side effects than systemic treatments such as chemo.
The side effects of instravesical BCG can be tough nevertheless. It is a very toxic drug and is delivered from a vial that is 500 times the amount that is injected as a TB vaccine. When you urinate the drug out of your bladder, you must add bleach to the toilet bowl, let it sit for half an hour and then flush. You must be careful to not get any on your skin or to expose a partner via sex or close contact.
For me, the side effects included extreme cramping and burning, fatigue and malaise, so intense that my dose had to be reduced. Some folks suffer much more, and the more doses you have the worse it gets. The side effects are cumulative.
I had six infusions, but for folks with high grade cancer and recurrent cancer, doses can reach into triple digits over a lifetime of battling a cancer with the highest recurrence rate of any other.
The drug is made through a lengthy process. It must be grown in a lab. At one time in the United States two strains and two companies provided BCG, Sanofi and Merck. Because of an outbreak of mold at their labs, Sanofi ceased making it. Merck is the only company now that makes the drug used in the United States, and it is in short supply.
It seems that bladder cancer is not important enough, doesn’t kill enough of us, for Merck to ramp up their production or for other labs to initiate production. Bottom line: there’s not enough money to be made.
Consequently, a shortage exists and other drugs have to be used instead. As is common with any treatment, the large treatment centers in high population areas tend to have greater access to BCG. If you see a local urologist in a rural environment, it’s likely the shortage is more extreme.
Consequences of not having the access you need to BCG can be losing your bladder, the standard treatment for folks with more advanced stages of bladder cancer. The surgery for bladder removal is serious and the quality of life resulting from losing your bladder compromised.
Enter COVID-19. Epidemiologists noticed something interesting about localities that routinely give BCG as a TB vaccine—rates of getting COVID were much lower. That’s encouraging, of course. It may mean that a vaccine safe enough to give babies could prevent contracting the Corona virus.
Currently, a study is being organized to test the theory. High-risk health care workers will be recruited to a double blind study to see if BCG is a viable option for prevention of COVID. Researchers had to use a group of people who were naturally being exposed to the virus and, of course, those on the front lines make the most sense.
If it turns out that BCG can be used as a COVID vaccine, then there is lots of money to be made, and I suspect that many drug companies will begin to take an interest. It will be a slow build to provide enough of the drug, but it could be transformative. Ironically, urologists are on the front line of seeking a vaccine for this pandemic.
During a BCAN webinar today about these developments I found myself crying, and I’m ashamed to say, not with joy. Rather I felt great sadness for my community of folks with bladder cancer. A drug, already in short supply, is being tested for a non-bladder cancer related illness.
It’s important to note that one vial of BCG used for one intravesical therapy can be used for 500 doses of vaccine for testing. It likely won’t have a severe impact on treatments for bladder cancer. And, if it proves to be successful as a COVID vaccine, there is no doubt that it will be produced in vastly greater amounts.
But, my community’s need won’t have been the catalyst. Nor will the worldwide communities who still face TB infections. We are more disposable, less important, either because our numbers aren’t big enough or because folks live in countries that aren’t Western and predominately white.
Nevertheless, this is, of course, very promising news for the pandemic and, in the long run, for the bladder cancer community.
On an anecdotal basis, and not scientific in any sense, I have to say that I’m encouraged by my own experience. For about four years after being treated with BCG I had no colds or respiratory illnesses at all. None. When I’ve mentioned this to a few others who’ve been treated with BCG, they noticed the same thing.
Researchers don’t know if intravesical use of BCG has any impact on the immune system outside of the bladder. In fact, most have rejected the notion that it does. Still, no research confirms this conclusion.
I am reminding myself that my protective sense of belonging to the bladder cancer community that gives rise to feelings of sadness and, even, some anger, are just that. Feelings. And, they will pass.
It could be the drug that has successfully treated me could protect millions of people from a terrible illness.
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