Doc says BCG not available

The BCG shortage is unpredictable and is likely allocated as Sara Anne suggested. I've put some thought to this, and have decided that if my urologist ever tells me that they have no BCG when I need it, I'll go find another BCG provider, even if it's not covered by my insurance, even if I have to pay for it out of my pocket. I want the best chances of beating this disease, and I believe that to be with BCG treatment.

Though I'm grateful to Merck for producing BCG, it seems unconscionable to not produce enough supply to meet the demand, simply because they do not make enough money from the production of BCG to make it worth their while. Ultimately, people have, and will die because of this. It seems odd that they don't just up the price of the treatment to make it more lucrative for them, just like every other major pharmaceutical company does.

Hi Rosie,
I couldn't figure out how to message you, or if it's even possible with this forum.

My insurance is through a local hospital in my area in Oregon. The reason I originally went with this insurance, was that my primary care doctor was covered by this policy and wasn't covered with other policies available through the ACA. Because I'm self-employed and my income is too great, I pay for 100% of the cost of the insurance. Fast-forward a few years, and that insurance no longer covers me to see my primary care doctor, so I retained the insurance and dumped the doctor. Now that I have that I have bladder cancer, I need to stay with an insurance policy that supports the urologist I go to. Long-story-short, I don't have any recommendations for your boyfriend, regarding insurance. It really sucks that I can't have insurance that allows me to go to my urologist, and keep the same primary care doctor.

We managed to get an appointment with a urological oncologist at Sylvester. At least the nurse sounded more optimistic, she said our doc uses BCG. I know it doesn’t work for everyone anyways but it’s ridiculous for a doctor to say no one can get it when that’s not true. At Sylvester at least I feel like we can get good guidance so I am relieved about that.

Hi, Mike. Marvin gets insurance through the ACA too. It’s open enrollment, Marvin has the hmo which so far is pretty good on keeping costs down. But we’ve never been faced with something like this. Do you have a policy you would recommend? Ok to message me if you prefer. And thanks for the info.

Below are the results of various studies.

1. BCG is superior to mitomycin alone in term of recurrence free and progression free survival rate.
2. Different BCGs give comparable efficacy and side effects.
3. Combination of chemotherapy generally gives better recurrence free period than single chemotherapy
4. Thermal chemotherapy generally gives better recurrence free period than non thermal chemotherapy.

So, below are some options if you live in Miami and you cannot access to MERCK Tice BCG and choose to seek other than mitomycin alone treatment.

1. Call other hospitals and clinics such as Moffitt if they have BCG available.

2. Participate in the clinical trial of Tokyo-172 strain BCG. Two locations in Florida are listed below.
Benefits of the clinical trial. No need to worry about the shortage during the treatment.

3. Higher efficacy intravesical chemotherapies. These may not be available near where you live.
Gemcitabine+Docetaxcel sequential (heated) - University of Arizona
Gemcitabine+Docetaxcel sequential - not heated - University of Iowa, Northewstern Medical

Ask the urologist if they offer anything other than mitomycin alone treatment.

4. Ask the urologist what is the strategy if there is a recurrence after the 6 weeks mitomycin treatment.

5. Ask the urologist what to do when BCG becomes during and after the treatment by mitomycin.


Clinical Trial of Tokyo-172 BCG

University of Florida Health Science Center - Gainesville
Phone: 352-273-8010
Email: This email address is being protected from spambots. You need JavaScript enabled to view it.

Tampa
Moffitt Cancer Center
Status: Active
Contact: Site Public Contact
Phone: 800-679-0775


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