Being refused a bilateral implant is “breach of human rights” - er, how?
I’m full of amazement and respect for Jason, who (with family and friends) funded his child’s second implant when their local primary care trust (PCT) turned it down; Tom, who had meningitis, lost his hearing, but the first implant got it back, and the second is really getting it back. (Within the limits of implants, which I’ve mentioned before.) Implants are not cheap. You’re talking tens of thousands of pounds.
But I think we’re going into la-la land when we say that to refuse a second implant is a “denial of human rights”, as claimed by a different set of parents in this Wandsworth Guardian (no relation to the Gdn) story.
Two-year-old Oskar Berknov has been profoundly deaf in both ears since birth and had one surgical implant fitted a year ago, allowing him to access sound and to develop language skills. But Oskar’s parents are calling for the PCT to fund the second implant which might allow their son to be educated in a mainstream school environment.
Mr Berknov said: “His ability to learn to talk, to make friends, to be safe in traffic and manage independently in school is all dependent on the directional hearing this implant would allow.”
Sorry, but it’s not. His ability to talk and make friends isn’t dependent on the second implant; we’ve got proof living in our house. (And how would you prove that the second implant is going to do the trick and make the difference?) Being safe in traffic? Might do, but even hearing children aren’t too smart at that one. Children have problems understanding traffic, because they underestimate the speed of approaching cars. That’s not hearing-related.
The lack of a second implant doesn’t hold him back from mainstream school either, because if your child has been deaf from birth then you (the parents) will have a Statement of Special Education Needs (SSEN) which you get written by your health visitor, say, and present to your local authority, which means that your child has a personal helper, and the school installs special gear to help him hear what the teacher’s saying.
The parents have clearly had a hard time of it: they only got confirmation that their child was deaf through a private hearing test, because the PCT insisted he could hear. (That’s not uncommon. I spoke to one parent of an implanted child who wasn’t identified as deaf until the age of three, because she was so good at working out what the testers were doing that they didn’t realise she couldn’t actually hear them.)
But here’s what it boils down to: without a big infusion of money for implants, if you give one child a second implant, you’re denying it from another. And the difference between no implant and one implant is a lot bigger than that between one implant and two. The first is the difference between no hearing and hearing; the second, between hearing and more hearing.
The only way to justify a second implant is to make the case to the PCT that spending that money will save you more than that amount over the life of the child. And that’s really hard to do.
Meanwhile, blogsearch turns up a child in Illinois who has had an implant - no, two - at the age of 7 months. Wow, that is young. And it’s interesting that the insurance company (one assumes it must be) is paying for two, isn’t it?
I’m not saying, see, that bilaterals are a bad thing. If the parents can bear their child to go through it, they seem to bring clear benefits. But it’s a problem when you’re talking about limited public funds.
- These posts might be related (the database thinks..):
- Two ears better than one, especially for cochlear implant makers (25 September 2006; score: 78.7%)
- How to get bilateral cochlear implants for a child (it's not easy) (23 July 2006; score: 58.19%)
- Some more on cochlear implants.. and their Daily Mail coverage (28 January 2008; score: 47.67%)
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January 17th, 2007 at 1:09 pm
The thing is, denying a second implant to a child is quite possibly a denial that that child will ever be able to make use of hearing in the unimplanted ear for the rest of his or her life.
The problem is that time is of essence.
As more and more children are getting two implants, it is becoming clear that those who are younger when they get the second implant are able to adapt to hearing in that ear quite easily. Older children struggle more to learn to listen with the newer ear, and may possibly never attain the speech disrimination abilities of the first ear. Moreover, binaural brain pathways that allow us to localize where sounds are coming from are also probably established at a young age. An older brain may eventually learn to localize, but probably not nearly as well as a young brain. (see work by Peters, Lake, Litovsky, Parkinson presented at the May 2006 Annual Meeting of the American Otological Society, Chicago, IL) It appears that the window of opportunity for the second implant begins to close around age 7, and by age 12 or so, is only open a crack (assuming the child has never heard from that ear; those who have a small amount of residual hearing amplified by a hearing aid may fare better. But in the case of meningitis, like your friend’s son had, the window may slam shut within weeks due to ossificiation of the cochlea.)
Since interpreting the signal from a single implant, or integrating the signal from two are brain things rather than an ear things, and since a child’s brain is more plastic early in life, denial of a second implant most probably means denying effective use of that ear FOR LIFE using any technology, no matter how advanced.
While cochlear implants are fairly robust devices, internal failures do happen. Take the case of a teen: a successful implant user since he was a baby, now well invested in academics, sports and a busy social life. His single implant fails. Best case scenario is that within a month, a new device is installed and activated. Although the technology will undoubtedly be better, the new electrode array will not lie in the exact same spots as the old one, and it will take some time — months — to relearn how to listen with the new implant. In all, there will be a significant amount of down-time that could be incredibly disruptive to the teen’s life, and will have a significant emotional impact.
Now contrast this with a teen with bilateral implants who has a failure on one side: minimal downtime. This is one reason my son’s audiologist now strongly advocates for bilateral implants: making a commitment for life that the child for being able to hear. To her, that’s providing the best care possible.
So what to do about limited resources? Well for starters, simultaneous bilateral implantation saves about $15,000 compared with sequential. The thing that makes cochlear implant surgery so expensive is the devices! Perhaps the cochlear implant manufacturers can give a break to people with national healthcare systems (or private insurance, for that matter) get two implants. They make a nice profit selling two implants to a single customer as opposed to just one. I think it will take some assistance on their part for bilateral implants to be more generally available.
January 17th, 2007 at 3:09 pm
A very brief addendum on cost effectiveness.
You wrote, “The lack of a second implant doesn’t hold him back from mainstream school either, because if your child has been deaf from birth then you (the parents) will have a Statement of Special Education Needs (SSEN) which you get written by your health visitor, say, and present to your local authority, which means that your child has a personal helper, and the school installs special gear to help him hear what the teacher’s saying.”
If a second implant can eliminate the need for a personal helper, the cost savings to the government over the course of the child’s school career far exceeds the cost of the 2nd implant surgery (the break even point probably happening after just one year.)
In my son’s case, about 6 months after getting a second implant, he no longer required an aide to help direct his attention or fill him in on things he may have missed in school. It really is it a lot easier to hear in complex environments when you have two ears to listen with. If it allows a child to hear just 10% more every day, over a week, a month and a lifetime, that adds up to a tremendous amount, and can translate into a great deal of independence, self confidence, a better return on investment from society’s perspective.
January 17th, 2007 at 3:18 pm
Lydia, thanks - those are all good points.
As I’ve said in email with Jason, the only way to win the argument in favour of a second implant with the NHS is if you can show that the total cost with a second implant is lower than with just one.
NICE (Nat’l Inst’tute of Clinical Excellence in the UK) is in the process of a study on CIs. Must put some of this stuff forward.