AUM: Giving cancer survivors their lost voice
It was a warm afternoon in 2019. Jagannath, a retired professional, was excited about cheering the Indian cricket team at the World Cup with his friends and grandchildren. Amidst the cacophony of cheers and laughter, he noticed something. His voice wasn’t quite the same. It seemed to have turned hoarse, and he felt pain. “What could it be?”, he wondered. A friend suggested he meet a doctor. He had throat cancer. What scared him even further was that he could lose his voice. For good.
Jagannath spent the next few days amidst moments of deep anguish. “Why me? I don’t drink or smoke or even drink coffee. How did I even contract it?” Nevertheless, there was no time to waste. He contacted a specialist and started radiotherapy soon after. However, the worst was yet to come.
He was a man who did not find his life worth living. This absolutely moved me.Dr. Vishal Rao innovator of AUM
After radiation came the surgery that involved removal of his voice box, a procedure that meant that he wouldn’t speak again. It was an unsettling experience. So, when his doctor suggested a prosthetic device to mimic his voice, he got it implanted. However, he was unconvinced. In the six months following the implant, the device that cost Rs 30,000 failed. There was an urgent need for an alternative, but the doctors informed him it would cost Rs 70,000, something he couldn’t afford.
Jagannath is among the thousands of throat cancer patients whose voice has been snatched away from them. For context, in India, over 26 million people were diagnosed with cancer in 2021 and, according to an ICMR study, one in nine Indians will develop cancer during their lifetime. These numbers are projected to escalate to 29.8 million by 2025.
Of this, a further 47,000, like Jagannath, contract throat cancer. Depending on the stage of your cancer, it takes over two months for people to reach the end of the treatment, and the survival rate, even in the best-case scenario, is not that high. But this cycle is relentless. With about 60% of laryngeal or throat cancers patients requiring the removal of the vocal cords, a fairly large number of patients lose their ability to talk. The cost of throat cancer treatment is their voice.
Jagannath too paid the price. It was a constant battle. How could he, amongst the loudest cheerleaders of India in every cricket match, go silent? The idea of never being able to cheer for your team, tell his grandkids stories or ask his wife about her day saddened him. This is when he found the answer to all his questions in a device called AUM, a miraculous voice prosthesis that cost a modest Rs 50.
An acquaintance introduced him to Dr. Vishal Rao, the mind behind AUM. He was told that Dr. Rao could help him regain his lost voice, and that was exactly what happened. A few days after the implant, Jagannath had his voice back. And now he is back to cheering loudly at all cricket matches.
Dr. Rao, an oncologist, developed the voice box for patients like Jagannath. People who can’t afford expensive healthcare, and therefore aren’t at the top in the list of priorities for the healthcare industry. It wasn’t his mission to revolutionise healthcare in India, he just wanted to make it accessible to the Jagannaths of the world. But it stirred a mini healthcare revolution, anyway.
Today, Jagannath is among 1,700 throat cancer survivors globally who use the AUM Voice Prosthesis device. The device can be fitted in just a 10-minute outpatient procedure, eliminating surgery cost for device insertion.
Breaking the access barriers
As a practicing oncologist at HCG Cancer Centre, Bengaluru, Dr. Rao treated throat cancer patients regularly. Any victory against an untreatable disease is a blessing few get. But it was the agony and the hopelessness on the faces of the patients who lost their voices that stayed with Dr. Rao.
A person’s voice is a huge part of their life and personality and there should be a way of retaining it, he kept thinking to himself. He was always researching solutions, but the devices available in the market were unaffordable for most of his patients. Not only did the voice boxes cost almost Rs 50,000, but they also had to be imported and replaced every six months. In 2013, he met a patient who had all his worst nightmares come true.
Sometimes, we take a lot of things for granted. I realised the power of my voice only during the tense moments at the brink of total voicelessness.Nalini Satyanarayan throat cancer survivor
The patient had beat cancer, but his lost voice made him unfit for his job as a security guard. Cancer had taken away his voice, his livelihood, and it was taking away his will to live. Dr. Rao says the conversation he had with the man changed him. “He was a man who did not find his life worth living. This absolutely moved me,” he adds.
The oncologist began contacting pharmaceutical companies to explore the possibility of discounts. But a chance meeting with a friend, Shashank Mahesh, a silicone material expert, changed his perspective. Mahesh asked Dr. Rao if the oncologist was planning to simply crowdfund patients all his life, or was he willing to get his hands dirty and build something? This was the ultimate propelling force behind the invention of AUM.
Soon, Mahesh joined Dr. Rao on this journey. The mission was to develop a product that was “affordable and accessible for throat cancer survivors”. In two years, the duo co-developed AUM. When the first patient to receive the implant spoke, he said “AUM”. The word AUM which is a sound in itself resonated with the work the good doctor was doing. And the device got its name.
A country’s true measure of success is not its GDP growth. What matters is the quality of life its citizens lead.Dr. Vishal Rao
With patent approvals in both India and the US, Dr. Rao and Shashank ensured the product was available for patients worldwide. The co-creators have also partnered with the Indian government for the Ayushman Bharat national health insurance programme to make AUM available free-of-cost across hospitals.
Dr. Rao started this journey alone, but the community grew to hundreds. When Nalini Satyanarayan, a throat cancer survivor, heard about his mission, she became a part of this movement. Nalini had been fitted with a voice box of German origin, which had to be changed every two years.
“Sometimes, we take a lot of things for granted. I realised the power of my voice only during the tense moments at the brink of total voicelessness. Today, when people look at me curiously, I tell them that at least I have a voice,” she says. Nalini, now, is on a quest to motivate youngsters to quit tobacco, the primary cause of 80% of throat cancer cases. She is also a counsellor for cancer patients and advocates the use of AUM.
The Infosys Foundation recognised Dr. Rao and Shashank’s efforts in the previous edition of the Aarohan Social Innovation Award, 2019. AUM was a winner in the Silver category. To this victory, the modest doctor has only one thing to say, “Awards like these help our ideas touch more lives”.
Finding the perfect fit
When AUM was first built, the device still needed minor surgery to be fitted into a patient’s food pipe. But inspiration often arrives unexpectedly, as it did when Dr. Rao spotted a pack of tampons at a store. He wondered if the insertion device could be as simple as the one used in tampons. This is when a friend told him about toy makers in Channapatna who could help build an affordable placement device. There, an artisan of Channaoatna toys, Kouser Pasha, created a prototype within an hour and that became the AUM inserter.
This mindset of building for the patient and not for billion-dollar valuations is why AUM is a league apart. A believer in conscious capitalism, Dr. Rao built the device as a healthcare product with a purpose.
AUM Prosthesis is still in its evolutionary stages. The current device requires the user to block air with a finger while talking, but the next set of devices will be hand-free.
“A country’s true measure of success is not its GDP growth. What matters is the quality of life its citizens lead. A decade ago, who would have imagined that a device that costs Rs 50 could completely restore someone’s voice? But it did, and that is the power of people-centric innovation,” says Dr. Rao.
Now, AUM has moved beyond prosthetics. It has helped build a community of cancer survivors in Bengaluru, where members meet regularly, sing, and motivate each other. Recently, the team bagged the rights for the popular song about unity in diversity - Mile Sur Mera Tumhara. Not too long from now, a group of throat cancer survivors will recreate the iconic song. And the powerhouse silently adding strength to their melodies will be AUM.