Bladder cancer care realities: perspectives from Japan and India

On Public Day of the World Bladder Cancer Patient Forum 2026 in Hong Kong, Junichiro Sano of the Patient Association of Bladder Cancer Japan and Sanjeev Sharma, Co-Founder and Director of Bladder Cancer India and the Lung Connect India Foundation, presented Bladder cancer care realities around the world. Two countries, two very different health systems, and a set of problems that turned out to be strikingly similar.

Japan: thirty years of waiting

For about three decades after BCG (Bacillus Calmette-Guérin) treatment arrived in Japan, not a single new bladder cancer drug was approved there. Then last year, news broke that two new treatments were finally on the horizon. Junichiro was undergoing BCG treatment himself at the time, as was a fellow patient, and the two of them decided their community could not wait in silence any longer. They shook hands and founded the Patient Association of Bladder Cancer Japan in November 2025, the country’s first patient group dedicated solely to bladder cancer.

Less than a year later, it has over 200 members, most of them currently on BCG treatment, alongside survivors and people who have had their bladder removed. Because members are scattered across the country, the association runs on digital: an online community where people post several times a day sharing worries, comfort and medical news, plus monthly online study sessions with leading clinicians and researchers. As Junichiro put it, knowledge is their power.

The association is fighting on three fronts at once:

• The drug lag. Treatments that are standard care elsewhere can take years to be approved in Japan. The association is lobbying the Ministry of Health, Labour and Welfare to speed up the introduction of therapies already approved abroad.
• Rising costs. Japan’s universal health system caps monthly out-of-pocket medical costs according to income, and Junichiro’s own cap sits at around US$ 350 a month. Those caps were raised this September, and the association has joined the movement opposing the increase. Innovation, he said, means nothing if patients cannot afford to stay alive.
• The silence. This is the hardest one. In Japan, talking about the bladder or the urinary tract runs into a deep cultural taboo rooted in ideas of ritual impurity. Patients hide their diagnosis from friends and sometimes from their own families out of embarrassment. “Cancer is just a disease. It is never a disgrace,” Junichiro told the room.

He also came with a direct request for everyone listening. To make the case to the Japanese government, the association needs letters of support and global data from bladder cancer organisations around the world, evidence that the rest of the world is moving forward and that Japanese patients deserve to move with it.

India: the distance between excellent care and reachable care

Sanjeev opened with a distinction that framed everything that followed. India has outstanding cancer centres, highly experienced doctors and access to advanced treatment. What it does not have is equal access to any of it. Of roughly 1.5 million new cancer cases a year, he said, more than 22,500 are bladder cancer, and for those patients the disease is only half the problem. The other half is how fast they reach the right doctor.

Blood in the urine gets dismissed as a minor urinary problem, self-treated, or misread by the health system as something else, and patients can bounce between several doctors before reaching a specialist. Then comes geography. The best centres are in the big cities, so a patient from a smaller town may travel hundreds of kilometres for a urologist, imaging or surgery, and the real cost to the family is never just the hospital bill. It is travel, accommodation, food, lost income, and a carer who may have to stop working.

Sanjeev’s point was that a lot of this is fixable without a single new medicine. What patients often need is not another clinical intervention, but someone to help them work out where to go and what happens next. Through Bladder Cancer India, his team is doing exactly that:

• Patient navigation across four hospitals, helping people identify the right services and understand their next steps.
• Support groups where patients and carers can share experience and see they are not going through it alone.
• Digital awareness that connects information to action, moving someone from “I have these symptoms and I don’t know what to do” to “I know where to go”.

He closed with a line that could serve as the theme of the whole session: patients should not simply be recipients of healthcare, they should be partners in it.

What the two stories share

Japan and India could hardly be more different in how care is funded and delivered, yet both speakers described the same underlying gaps: a warning sign that gets ignored, a system that is hard to navigate, costs that reach well beyond treatment itself, and patients carrying it all quietly. Both are being tackled the same way too, by patient organisations that are young, small, digital, and determined.

Can your organisation help? The Patient Association of Bladder Cancer Japan is asking fellow members for letters of support and global data to strengthen its case to the Japanese government. If you can contribute, get in touch with the Coalition, and explore our global network to see who else is working on these issues in your region.