Huge deficit in funding for life-changing hearing device

In December 2019, journalist Kate Green reported on the huge deficit in funding for cochlear implants for adults affected by a severe to profound hearing disability.

She wrote:

Simon Baldock started to lose his hearing as a teenager. Two months ago he was told that current hearing aid technology could do nothing more for him.

The 48-year-old psychologist's deafness, the result of a genetic condition, has worsened over the last 18 months and is affecting his stress levels at work and at home. Baldock was delighted to be told by his audiologist he qualified for a cochlear implant, but his hopes were dashed almost immediately when he learned there wasn't money to fund it. Cochlear implants are life-changing for those with hearing loss, yet government funding only stretches to one-in-five referrals.

Funding for children - those under 19 years - is meeting demand, but 197 adults are currently on the waitlist.

The implants are not covered by insurance, meaning people either need government funding through the disability budget or front the $50,000 cost themselves. The average wait time is 27 months, but because the waitlist is prioritised and not a queue, low-priority patients risk never receiving an implant.

Baldock said he could no longer listen to music, watch TV, go to the cinema, or have conversations with more than one or two people at a time.

"It is really emotionally challenging to be sat there, say at a family gathering, desperately wanting to be part of the conversation, but just sitting and nodding, smiling, exchanging pleasantries and not really knowing what is going on."

He was also worried about the longevity of his employment, as being able to listen to people was a huge part of his work.

"All I try to do is to survive through to the end of each day as it is very tiring, physically, physiologically, and emotionally."

Southern Cochlear Implant Programme (SCIP) is one of two cochlear implant providers in New Zealand, caring for patients south of Taupo. The Northern Cochlear Implant Programme cares for patients north of Taupo. Established in 2003, SCIP provided care to more than 950 patients. General manager Neil Heslop said funding should go up by 40 adults to 120 nationally. Funding was not increased in the 2019 Budget.

The previous government provided only a one-off increase of $6.5 million for an extra 60 adult cochlear implants in 2017/18, after a 26,000 signature petition was presented to Parliament. No further funding meant, based on current referral rates, there could be 500 adults waiting for a cochlear implant in as little as five years.

Warren Dellow, from Nelson, fronted the cost of $50,000 from his retirement fund. Dellow was a clinical biochemist working in cancer diagnosis technology until deafness forced his early retirement in 2010. He could get by in one-on-one meetings by lip-reading, but the pressure of keeping up was exhausting.

"People do start to lose patience with you."

With around 20 per cent hearing in his right ear and total deafness in his left, he was told by his audiologist that hearing aid technology available could not help him.

"The surgeon told me I qualified for an implant but with hundreds on the list, I would probably die before my name came up. It's soul-destroying.

"He said a major change in my mental health might change my status in the queue, but it shouldn't be like that."

Dellow had his surgery in September last year, and little things had been rediscovered, like going to the movies and catching up with groups of friends.

Ministry of Health deputy director-general of disability Adri Isbister said $8.43 million was invested per year to cochlear implant programmes. With this funding, approximately 86 New Zealanders received funded cochlear implants, of which up to 16 were infants, 30 were children, and 40 were adults.

"We appreciate how life-changing a cochlear implant can be," Isbister said.

As with other health services, priority to receive a cochlear implant was given to those with the greatest need and ability to benefit. People were ranked based on their level of need, taking into account supported dependents (children or elderly), whether they were working, studying, their mental health, their ongoing quality of life and potential for isolation, other disabilities, and whether the deafness was sudden or gradual.

SCIP member and ear, nose and throat surgeon Rebecca Garland said it was "soul-destroying" having to tell people they would have to wait years for a life-changing solution.

"Half of my job is sending people back to their GP to put them on antidepressants rather than giving them an implant," Garland said.

"Can you imagine how that feels?"

To watch the video interview, please click here.