Why Australia must break the conspiracy of silence and restore hearing to the most vulnerable | Ranjana Srivastava

It is time the government listened to the experts and reined in misleading providers

“If I don’t do something about my hearing, I fear I could lose my mind.”

While hearing loss is indeed a strongly modifiable risk factor for dementia, it shouldn’t have taken this pronouncement for me to pay attention.

For some years, my mother has observed that her hearing isn’t as good as it used to be, which describes nearly three-quarters of people like her over age 70. But she seemed to get by in social settings and sometimes at home we just shouted a little louder.

Attracted by an ad for free hearing aids at a mall, she met an obliging man who, after perfunctory testing, declared that she needed hearing aids. She demurred due to the stigma but the man kept calling and texting every week. Eventually, the combination of “wasting the poor man’s time” and her own concern led her back to the shop where she was fitted with a pair of hearing aids. To her mind, their being “free” reasonably mitigated any downside. “If they work, that’s good; if not, they are free.”

For my part, I was glad that, not being a native English speaker, she had managed to navigate an aspect of her health by herself, something I have long advocated for.

Following a mild bout of Covid, her hearing worsened. Decongestants, medications and doctor visits followed, all in vain.

Amid exuberant conversation, she would ask quizzically: “Did I miss something?” She started keeping quiet, pretending to be happy just being among us. But it was when she stopped answering her doorbell that my alarm bell rang.

I checked if she was wearing her hearing aids – the best devices won’t work from the inside of a drawer. But diligence got her nowhere, so she trekked back to the provider who changed the batteries without explaining if that was the problem. It was not. Disheartened, she went to a second provider who tested her hearing (“for free”) and told her what she already knew – that she had poor hearing.

He lobbed her to the first provider who said that because she had sought a second opinion, she was no longer eligible to receive his services and should come back after five years to receive another “free” product.

Watching this complete disempowerment from the sidelines finally got to me. What kind of providers were these? And what would five years of hearing impairment do to her quality of life?

My grand ambition that my mother be her own advocate had stalled – it was time for me to step in.

But where to begin?

My knowledge of the ear stops at the (Latin) names of the three bones of the middle ear. I last interpreted an audiometry graph as a medical student. Most of my patients have hearing aids that they either don’t wear or turn off to spare me the ringing sounds that drive them mad. In search of answers, I turn to Google and luckily landed on an independent expert report. I read it in one sitting, all 200 pages, my eyes widening at every finding.

The Australian government funds the Hearing Services Program to a tune of more than $531m but, established in 1997, it still has no statement of purpose or specific objectives.

Various cohorts are eligible for assessment and, if appropriate, partially or fully subsidised hearing devices. In 2019-20, an estimated 4 million people experienced hearing loss, 2 million met the eligibility criteria but only 39% of eligible people participated. The usual demographics missed out – the Indigenous, aged care residents, culturally and linguistically diverse and rural dwellers.

The whole report is excellent but I was drawn to the section on consumer choice.

While the program aspires to “consumer sovereignty”, consumers have little idea of the high stakes involved in choosing an initial provider, which affects what services they are offered. Vertical integration is commonplace, where the manufacturer or distributor controls the clinic and fails to disclose sales incentives. Seven out of 10 providers supply over 90% of devices to their clients from only one manufacturer.

The government fully subsidises 200 hearing devices and partially subsidises tenfold more. Patients can accept a fully subsidised model or use the government subsidy to purchase a partially subsidised model; the out-of-pocket cost ranges between $150 and $15,000.

Despite a duty to disclose price, subsidy, incentives, product features, maintenance, repairs and replacement, compliance is patchy and formal accountability poor.

In the worst of both worlds, choice is constrained, and the consumer is unaware.

The expert report seems prescient in identifying every problem my mother encountered.

Knowing what I do now, what would I have done differently?

First, I would have paid better attention to my mother’s milder problem because arresting hearing loss at an early stage affects quality of life, mood and cognition.

Even a cursory search for government services would have led me to the Hearing Services Program website and given me a roadmap. And had I read the independent expert report freely available on the internet, I would have been a more confident consumer, aware that the Australian Competition and Consumer Commission had repeatedly cautioned unethical providers.

And, much as I hate to admit it, I would have assumed that an elderly woman who is not fluent in English, can’t hear well, is emotionally upset and trusts every provider to do the right thing had an early disadvantage.

After learning the difference between an audiometrist and a clinical audiologist, I switched to the latter.

She wasn’t “free” and neither were the hearing aids now that the one-time government subsidy had been squandered on a useless product. But she was a consummate professional who dwelled on every aspect of communication, tested hearing via more than one method, provided comprehensive information, and encouraged my parents to take their time making an expensive purchase. You know exceptional service when you see it.

As a public hospital doctor, I find few things more upsetting than the waste of taxpayer funds, this time by my own family who didn’t know better. But with one in four Australians predicted to experience hearing loss by 2050, we won’t be the last ones in this predicament.

To hear properly is to be connected to the world. It is time the government listened to the experts, reined in misleading providers, and put our money in our ears.

• Ranjana Srivastava is an Australian oncologist, award-winning author and Fulbright scholar. Her latest book is called A Better Death


Ranjana Srivastava

The GuardianTramp

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