April 3, 2009

Film: Voices from El-Sayed at Bristol

Voices from El-Sayed (Israel) is being shown at the Watershed, Bristol on Saturday 9 May 2009 (1500).

You can see the trailer here:

The presentation is described as:

The Bedouin Village of El-Sayed has the largest percentage of Deaf people in the world. Through generations a unique sign language has evolved as the primary communication in a society that accepts deafness as natural as life itself. That is, until the village's tranquil coexistence between Deaf and hearing is disrupted by Salim's decision to dramatically change his Deaf son's fate through a Cochlear Implant operation. Presented in partnership with University of Bristol's Centre for Deaf Studies, the screening will be followed by a discussion on the issues raised in this intimate and moving documentary. BSL Interpreters will be present.

This is the only place we know of that this film is being shown in the UK. Limited tickets, so if you're interested hurry up and book

UPDATE: BSL version is now available,

First Hand Films: Voices From El Sayed (aka A Snail in the Desert)
Book tickets for Voices From El-Sayed @ the Watershed
Event on Facebook - New film: Voices From El Sayed (A Snail in the Desert)
Centre for Deaf Studies, University of Bristol
Voices from El Sayed, Fan page Facebook

March 26, 2009

Report on World Audiolgocial Devices Market

money.jpgThere is a 366 page report available on the World Audiological Devices Market. In other words, how much money there is to be made from flogging CIs and hearing aids in aid of making us normal. Sorry, an investment opportunity and a chance for the wider world to go and make some moolah.

This report analyzes the worldwide markets for Audiological Devices in Millions of US$. The major product segments analyzed are Hearing Aids ...., Measurement/Testing Devices ...., and Cochlear Implants. The report provides separate comprehensive analytics for the US, Canada, Japan, Europe, Asia-Pacific, Latin America, and Rest of World. Annual forecasts are provided for each region for the period of 2000 through 2015. The report profiles 116 companies including many key and niche players worldwide ....

So this "Global Strategies Business Report", purports to provide information such as market trends, "Potential Addressable Market for Cochlear Implants", "Handful of Players Dominate the Marketplace", "World Long-term Projections for Cochlear Implants by Geographic Region". And so it goes on.

With a desire to make money pushing (a) who deaf people should be, (b) communication processes, (c) what sorts of people society does or does not find acceptable. Some of you might slam me for typing that, after all we're all free agents and no-one is obliged to do anything. Especially when free market economics comes into play.


The bottom line common sense dictates with multi million pound investment opportunities, comes agressive marketing. There's a whole difference between marketing a chocolate bar or the newest laptop, than technology that has the ability to oppress and possibly change the boundaries of who people are. With that comes statements as to who society finds acceptable and who not.

So, you're interested in this report? Of course you are! You want to know how these business people are selling us, and how they see us as a basic commodity. Right? Good news, you can buy a copy, from here for the princely sum of €3,560.00.

Yes you read that right.

Somehow I think they'll deny us a free copy, so we could blog their analysis of the market and potential strategy for the next six years. Bottom line: there's a world out there that sees us as commodities to make money. An investment world that has probably never even met a deaf person, nevermind knows how to communicate. The frame of reference is their retirement age, and shareholders going along with means to attain this faster.

Us cynical? Never.

PR Inside: Reportlinker Adds World Audiological Devices Market Report
World Audiological Devices Market

See also:
Cochlear's dirty marketing tricks
Cochlear's aggressive marketing working
Cochlear set to grow 20% in 5 years

Photo credit: Steve Wampler under CC

March 25, 2009

Parliament: Bilateral Cochlear Implants

babycochlear.jpgJohn Heppell (Nottingham East, Labour)

To ask the Secretary of State for Health what his plans are for the future provision of simultaneous bilateral cochlear implant to those who require it.

Dawn Primarolo (Minister of State (Public Health), Department of Health; Bristol South, Labour)

The National Institute for Health and Clinical Excellence (NICE) issued guidance on 28 January 2009, recommending simultaneous bilateral cochlear as an option for children or adults who are blind or have other disabilities and who are not receiving adequate benefit from acoustic hearing aids.

Primary care trusts are required to make funding available within three months of final NICE guidance to enable clinicians to follow positive technology appraisal recommendations.

As if one appearance on this issue in the Commons wasn't enough in one day! Not sure why this question is being asked, since NICE already recommended bilateral implants? Perhaps for the Ear Foundation this isn't moving fast enough?

They Work For You

See also:
Parliament: Implementation of NICE Cochlear Implant Guidelines
Cochlear Implants prevent 'scrambling' in deaf brains
Parliament: Cochlear Implants & National Institute for Health & Clinical Excellence
Cochlear's dirty marketing tricks
Oh god, not more CI deaths
Cochlear's aggressive marketing working
Cochlear Implantation Increases Meningitis Risk
Cochlear set to grow 20% in 5 years

NICE Guidance: Cochlear implants for severe to profound deafness in children and adults
Ear Foundation

Photo credit: bjorn2008 under CC

Parliament: Implementation of NICE Cochlear Implant Guidelines

babycochlear.jpgJohn Heppell (Nottingham East, Labour)

Last week, I attended a celebration of the Ear Foundation, which is a charity that was set up to fund the first cochlear implant procedure in the city of Nottingham. Now that the National Institute for Health and Clinical Excellence has decided that it is a good idea for profoundly deaf children to have implants for both ears, can the Secretary of State tell me what he is doing to ensure that primary care trusts listen to that advice?

Dawn Primarolo (Minister of State (Public Health), Department of Health; Bristol South, Labour)

The recommendations from NICE with regard to implants must be complied with within three months of the guidance being issued, which was 28 January. PCTs are required to do two things. First, they must make available the funds for clinical decisions to be taken on the patients who should receive that treatment. Secondly, where there are patients who have already been treated but would now benefit from the NICE recommendations, they must ensure that a proper assessment is made of whether they should have that treatment provided to them.

Comment from GOD:
"Good idea", says whom?

They Work For You

See also:
Cochlear Implants prevent 'scrambling' in deaf brains
Parliament: Cochlear Implants & National Institute for Health & Clinical Excellence
Cochlear's dirty marketing tricks
Oh god, not more CI deaths
Cochlear's aggressive marketing working
Cochlear Implantation Increases Meningitis Risk
Cochlear set to grow 20% in 5 years

NICE Guidance: Cochlear implants for severe to profound deafness in children and adults
Ear Foundation

Photo credit: bjorn2008 under CC

March 7, 2009

Hear and Now - More4, Tuesday


More4 will broadcast HBO's Hear and Now (USA) on Tuesday 10 March 2009 from 10pm - 12 midnight. You should be able to catch it on More4 +1 from 11pm - 12 midnight (again on Tuesday).

Here's a trailer (subtitled):

There is a longer trailer here, but its only subtitled when deaf people are speaking. Can someone please explain, why hearies must only have subtitles for the bits they cannot understand? Does anyone see the irony here, a programme about the dilemma around cochlear implants, hearing people are being exclusive and its small wonder why people get pushed into a corner. For the thousandth time to all hearies out there, if you're going to produce media about deaf people and make money off it (or even a stick deaf content on YouTube); at least have the ethics to make it accessible to deaf people. So we can join in the conversation. This should be a no brainer and non negotiable. (Someone might want to submit the video to SubPLY for captioning, if you do, please post the link below).

An extract from the programme's synopsis:

Both age 65 and deaf since birth, husband and wife Paul and Sally Taylor led rich lives filled with jobs, hobbies, passions and the support of a devoted four-generation family, including their own three hearing children. Pioneers in the deaf community, Sally worked as a teacher and a college secretary and lent her expert lip-reading skills to law enforcement investigations, while Paul, an engineer and retired professor, helped develop the TTY, a widely-used telecommunication device for the hearing-impaired.

When the Taylors announced just before retirement that they planned to get cochlear implants - a breakthrough technology that could restore their ability to hear - their decision was met with mixed feelings by their daughter. "After this surgery, who will they be?" she asks. "Will they still be deaf people, or hearing people, or will they be something in between? What if the implant doesn't work? What if one of them can hear and the other one can't?"

You can read the rest of the synopsis here.

The interview with Irene Taylor Brodsky worth a read. Within this she admits, that the film is only superfically about cochlear implantation but around intimacy.

Beyond that, having not seen the film we can't comment. The synopsis, trailer and even the poster seems is written with a hearing audience in mind. Does anyone know of any US blogs that commented on this after broadcast (especially with a Deaf slant), that we could link to?

See also:
Cochlear Implants prevent 'scrambling' in deaf brains
Parliament: Cochlear Implants & National Institute for Health & Clinical Excellence
Cochlear's dirty marketing tricks
Oh god, not more CI deaths
Cochlear's aggressive marketing working
Cochlear Implantation Increases Meningitis Risk
Cochlear set to grow 20% in 5 years

HBO: Hear and Now

January 1, 2009

Cochlear Implants prevent 'scrambling' in deaf brains

The New Scientist (3 January 2009) touches on testing cochlear implants on kittens (again) and how the results show early implantation prevents brain scrambling:

Cochlear implants prevent 'scrambling' in deaf brains

Brain activity that is 'scrambled' in deaf cats develops normally if they are fitted with a cochlear implant shortly after birth. The finding may explain how deaf children given implants as babies can learn to speak almost as well as hearing children.

In hearing animals, sound vibrates hair cells in the inner ear, triggering neurons to send impulses to the brain. In deaf animals, these hair cells are often defective; cochlear implants compensate by stimulating neurons directly.

To see how this artificial stimulation affects the brain, Rob Shepherd at the Bionic Ear Institute in Melbourne, Australia, and colleagues recorded electrical activity in the cortex of 17 8 month-old cats that were deaf from birth. As they monitored the cats' brains, they activated each cat's cochlear implant.

Ten of the cats had received the implant relatively recently and their electrical activity was "completely scrambled", indicating that they did not perceive sound coherently: normal cortex activity is key to perceiving sound and, in humans, to developing speech.

In the seven cats that received implants at 8 weeks old, however, activity was similar to that in hearing cats (The Journal of Comparative Neurology, DOI: 10.1002/cne.21186).

Some deaf people say it is unethical to operate on deaf babies, who would otherwise learn sign language. Neurologist Jim Pickles at the University of Queensland, Australia, says the latest work "increases the weight of evidence to implant children early".


Some Points:

1. The need to unscramble, and the whole basis of this research assumes the concept of normality. It assumes that only auditory based means could be 'normal' languages. How about I set up a research project to identify scrambling in hearing brains, just to get why they cannot learn sign language better? That might be absurd to the passing reader, but precisely how some of the logic above reads to me.

I understand the main thrust of the argument above - if you are going to employ auditory intervention you need to do it early. However, the article above appears to move away from this finding and concludes wrongly by adding an additional assumption. i.e. adds to the conclusion that all children should get implanted (as early as possible). Even scientists should recognise choice. The New Scientist would do well to get a deaf person (in a professional capacity) to comment on the above, not make reference to a vague nameless group (which lends to a lack of credibility) against a 'Professor' who really must know best.

2. Cochlear implants are one of Australia's major exports (see this post as an example). Economics matters, and Australia is going to support such initiatives. How about someone having the ethics to pump funding into sign language research, to balance out diversity and promote acceptance?

3. Do deaf people agree with animal testing in their name? Has anyone ever bothered to debate this, or should we employ classic deaf organisation mentality: shut the hell up and tow the line because we mustn't upset the status quo. You are not thinking human beings here.

4. Here we have funding in the region of ASD$20 million, all money controlled by hearing people. See this year's annual report [PDF].

Okay, as a white person: how about I set up a foundation to research blackness and to make black skin white. Surely black people must have such a hard time existing as a black person, all this discrimination in society, racism and whatnot. Lets develop a drug to make their skin white! Those poor black people, they need my help. With it, their problems could be solved, line up right away! Don't complain, because I'm going to fix you. Sure, I could make a lot of money, but lets hide that fact and dress it up as help. I could also get lots of awards for such sweeping innovation, and why should I bother to involve black people? Their opinion is unimportant because I'm helping them! That's enough. Eradicating their woes (which I've subjectively decided, even though I'm not Black) - don't complain!

See how much the damn logic is flawed? Yet because we are 'broken' (says who?), someone along the line just gave permission; thus makes all the above is just perfectly alright.

And a happy new year to you too!

And for the record, if you as a deaf adult want to hear: go right ahead. That is your choice, none of my business etc; just please do yourself a huge favour and explore your identity. However, I do have a massive problem with a (hearing) society statement that make out Deaf people are abnormal and has no tolerance for diversity.

See elsewhere:
Implants when babies could help deaf kids speak

See also:
BUAV guide to charities & animal testing, what about deaf organisations?

May 12, 2008

Parliament: Cochlear Implants & National Institute for Health & Clinical Excellence

nihce.gifLast week there was a debate in parliament about the National Institute for Health and Clinical Excellence. Within this debate, there was reference made to cochlear implants, and wider benefits not being factored or measured when making a budgetary argument. This suggestion was made by the RNID:

Sandra Gidley (Shadow Minister, Health; Romsey, Liberal Democrat)

... That might be a little unfair, but many patient groups feel that they are treated unfairly and that wider benefits are not fully taken into account. It would help the public accept some of the decisions more readily if they were reassured that such factors had been taken into account. The then Minister of State, Department of Health, who is now Secretary of State for Culture, Media and Sport, came before us at the time and said that he was satisfied with the situation. Sadly, such is the reputation of politicians that the public do not regard that as quite enough evidence.

That aspect came up again yesterday when I was at a reception that was hosted partly by the Royal National Institute for Deaf People. NICE is looking into cochlear implants. One of the concerns raised—it might be a false concern—was that while there would be savings for the education system because children with cochlear implants could engage in mainstream schooling, that might not be fully factored into the equation. It is clear that a one-size-fits-all solution is difficult to arrive at when examining wider impacts.

Since there's a current review on the case for bi-lateral cochlear implantation, any cost argument will be politically motivated by this.

Comment from Alison:
I really wish deaf organisations would stop giving out mixed messages here, and the onus for the deaf person to fit within society to be a cost benefit. Push cochlear implantation, because it would save money. Perhaps for some, there might be less recurring cost, but essentially it also gives a strong message with a CI you aren't meant to be demanding speech to text (or whatever rocks your boat) as far as access goes. It gives a strong message that the individual is solely responsible for fitting, and appearing "normal".

It is also bad policy reasoning, and moves away from an *individual* decision, without pressure. It starts to get dangerous as you trample onto an interpretation of a duty to have medical intervention, because you cost society money (another false argument). This is not a message that politicians need to be given, because it will have a ripple effect on the rest of us including children. Deafness should not be a cost-benefit exercise, and the same exercise is not frequently performed at the justification of women, black people, gay people etc.

For this reason alone, there needs to be Deaf input into this review, as like it or not it will have implications for the rest of us, and an undue pressure in medical settings or even an expectation to have an operation.

As a side note, I've worked with many children who have CIs. One summer I attended an event, where I had to deliver training, and one child in particular was extremely disruptive. They were told to go out from group settings etc, and demanded to go home. During the break I talked to this child one to one, and just let them talk. It transpired that they once attended a deaf school, and they were bribed into a CI by being told they could have a pet. After switch on, the child was transferred to a mainstream school; where they said they had no deaf friends, and found it difficult to communicate. Stating that they wanted to run away and they hated it. During the course of the residential, the child became more placid, co-operated and no longer wanted to go home (the place and to re-call the parents to tell them this). When the parents came to pick up the child at the end, they demanded to meet the person who "managed to control their child". The only response I was able to give them, "I just listened". It is stories such as this, that need to be remembered when people are policy pushing the you must fit into our agenda.

They Work For You

April 17, 2008

Coming soon: Hybrid Implant - Hearing Aid

hybrid.jpgIt seems a hybrid implant / hearing aid is currently being tested. Part hearing aid part implant, which is aimed at hard of hearing people with some residual hearing but too much hearing to be considered a candidate for a CI. Since the implant threshold is much lower now (I have known people who have identified as HoH with implants); this would encompass a much broader spectrum of people.

This hybrid device claims to insert a thin wire, alongside or next to natural nerves:

The implant is specifically designed with a thin electrode to occupy less space in the inner ear. It is implanted by special surgical techniques to preserve natural hearing.

If you were hard of hearing, would you risk chancing what residual hearing you had, in such an operation? All operations carry risks, and with this risk would come the usual risks attached to a standard CI operation.

And goes onto say:

nitial studies on the hybrid device suggest there is a synergistic effect achieved by maintaining the natural hearing and coupling it with the cochlear implant, particularly for distinguishing speech in noisy environments. The device both amplifies low frequencies and electronically stimulates middle and high frequencies.

For marketing even where there is a financial interest, this is a tall claim. There is a whole difference between taking risk to make money and an operation someone is prepared to undergo (medical risk, including damage to existing nerves) and secondly why does medicine take such a singular one dimensional approach to broken ears?

Anyhow, they looking for guinea pigs to take part in their trial, to see if such a system would be viable. This is not an endorsement from GOD! GOD believes there's more to a human, other than ears on legs.

Ask the Readers:
What do you think? For hard of hearing people, would you risk having this, or more to the point taking part in such a trial?

Newswise: New Hybrid Hearing Device Being Tested, Combines Advantages of Hearing Aids, Implants
UT Southwestern testing new hybrid hearing device combining advantages of hearing aids, implants

See elsewhere:
University of Texas Southwestern Medical Center

November 14, 2007

Cochlear's dirty marketing tricks

cochlear.jpgWe've been told that a complaint was filed in USA earlier this year against Cochlear. Upon investigation, we found out that the case focused on Medicare and exaggerated claims made by providers and possible competition practices.


So what's this about? Someone called Brenda March worked as the Chief Financial Officer and Vice President of Cochlear from 1998-2004. She became a whistleblower, and filed a complaint (with the US government) [PDF], via her lawyers. This case has now been referred to the US HHS Office of the Inspector General, by the US Department of Justice.

Whilst this complaint focuses on specific American laws around Medicare, and the fairness of payments, it also contains useful facts about how cochlear implants are sold and marketed.

Incentives to use Cochlear's products (implant CIs)

In 1997 Cochlear established a 'Partners Program' (and subsequent schemes), which gave surgeons 'points' each time they implanted a CI.

A points programme worked in the same way as rewards programmes you would get at your local supermarket. E.g. when you go shopping in Sainsburys you can get Nectar points. Get enough points and you can get some freebies or rewards. Shop elsewhere, and perhaps you can collect Air Miles, AAdvantage etc. The company buys in your loyalty, thus you feel obliged to buy from them. Its a clever marketing technique, and most of us will participate.

The okay thing about all the above marketing, is you are making decisions which affect *your* life, and *your* finances, and that is where it ends. You are fully aware this is happening, thus able to make an informed decision. Secondly, it usually has no direct implications on anyone's health.

The case of Cochlear points, works in a similar way. Surgeons, audiologists and other front line staff would get points each time their service brought a CI from Cochlear. In other words, the more Cochlear implants a surgeon implanted, the more 'points' they would get, and thus bigger and more freebies from Cochlear.

Purchasing these devices for medical staff, was not for personal use, but they would then need to sell the benefits of a CI to a deaf person or parents of deaf children to get rid of the device, so in turn they could buy more CIs from the manufacturer, and get more points or bigger freebies.


Freebies included (to woo medics and encourage cochlear implantation):

- golf tournaments
- first class airfares and also for spouses or guests
- exotic holidays
- all expenses flights/trip to Australia twice a year, with significant free time & recreational activity
- payment of salaries of employees, and general operating expenses of clinics (which means more profit for physicians or practices)
- free products (which they could then sell on - device costs £16,500, so that much free money)
- direct cash payments

On a points system, these freebies would increase the more CIs implanted. Implant more, and you get a bigger personal prize.

To quote from the complaint brought by the US government and a former Vice President of Cochlear:

"The express purpose of such payments are and were to encourage Physicians to direct hospitals ... to purchase Cochlear Implant Systems".

Other dubious practices

Other marketing techniques included such people involved must agree to purchase between 5-10 implants to attend an event. You would obviously then need to pass on this purchase decision to a deaf person, by marketing or selling the idea of a CI to them.

In addition, Cochlear required provide certain outcome evaluations i.e. make sure the results were favourable to Cochlear. Perhaps modify statistics or influence these, and lack impartiality.


See the mentality here? Lets sell the benefits of a CI to deaf people, perhaps tap into their vulnerability, so I can have some more freebies. Perhaps tell them they won't get through education (I've been told this) if they don't have a CI. Abuse and play on fear. Perhaps tell parents that alternatives such as sign language is a bad, and their child will never be normal (again I've seen it happen in clinical situations).

The problem with this, is two things:

- there is a conflict of interest between a surgeon getting a reward, and what is in the best interest of the patient. A surgeon might want some freebies, thus could go for a hardcore marketing technique (implant will really change your life etc), whether it is good for the patient or not. This brings the medical profession into disrepute.
- who is in control? When you go shopping at Sainsburys, you make an active decision to do this, and making an informed decision. The process is more transparent. How many end users are aware of the above?

Cochlear has publically stated that it wanted a 20% target growth internationally, and has beaten these targets, thus one can only assume that such aggressive marketing techniques (and what I would call unscrupulous), are happening elsewhere including the UK. For an international company, it would not single out one country in terms of incentives.

Who is protecting deaf people?

Okay, exactly what are deaf organisations doing about this? Pussyfooting around in case they offend someone, as they have done so for years? Too scared to jeopordise their positions, and put their neck on the line?

Do they receive money too or some other incentive to shut the hell up? Balanced information cannot exist just by taking CI information vs cultural information, money and power structures get in the way.

Hmm ...

A good example of money being the root of all evil?

For the record, if an adult wants an implant then they can have 100 for all I care. However, the over marketing strategies has always scared the hell out of me. It plays on fear of being in a minority and seeks to makes millions from this.

As for Cochlear shareholders, you should all be ashamed of yourselves. The sad thing is, due to how society is constructed, these people will probably think its an ethical investment.

Complaint: US Court District of Colorado [PDF]
Former CFO Turns In Cochlear Americas
Deafness Research UK: Cochlear Implants

See also:
Cochlear set to grow 20% in 5 years
Cochlear takeover bid by Medtronic possible
Cochlear's aggressive marketing working

October 12, 2007

Oh god, not more CI deaths.

The FDA has just issued another health warning about cochlear implants and meningitis, following the deaths of TWO MORE deaf kids. This shouldn't be happening!

Children with Cochlear implants are at a higher risk for developing bacterial meningitis, a potentially deadly infection, and must be fully immunized against the disease. That warning came from the Food & Drug Administration (FDA) after it learned that two children with Cochlear implants had recently died from bacterial meningitis...


...In its latest health alert, the FDA said that two children – ages 9 and 11 – with Cochlear implants had died from bacterial meningitis in the past year. Neither had been fully immunized against the disease, and both had Cochlear implants with positioners.

This isn't the first time this has happened. We vlogged about other cases in February and had a 3-day demo about it back in 2002, when it happened to loads of kids:


More pics here.

How many deaths over how many years is it going to take before this kind of thing stops?! Their lives are not disposable.


Bacterial Meningitis Kills Two Children with Cochlear Implants, Prompting FDA Warning (
CI to blame for death by meningitis
Cochlear Implantation Increases Meningitis Risk

August 14, 2007

Cochlear's aggressive marketing working

cochlear.jpgCochlear has just announced a 25% rise in net profit after tax to a record $100.1 million for the year ended 30 June 2007, while core earnings were up 24 per cent to $107.56 million. Global sales of Cochlear's implants jumped by 24 per cent on last year, with 15,947 units sold.

A Revenue Breakdown:

Americas: 26% to $249.8 million
Europe: 23% to $213 million.
Asia-Pacific: 34% to $80.1 million (strong growth in China, India, Korea and Australia)

Total revenue: $559.4 million, up 24 per cent.

Cochlear holds about 70% of the global implant market, with more than 90% of sales and 50% of expenses in foreign currency.

As a side note, within all this profit there's been a lot of press this year around Cochlear worker's threatening to go on strike due to pay / working conditions.

Beyond forecasted growth

This year's figure has beaten the target 20% growth figure that was set back in March.

The really scary thing is, Cochlear sees the company as a "start up", even though its been on the scene for 25 years!

"In the product life cycle, we're still in the early stages," Dr Roberts said.

"If you look at Cochlear implants, the outcomes that people are getting are improving all the time, and the clinical outcomes are improving because the technology improves.

"I view the company as a 25-year-old start up."

Cochlear has forecast core earnings growth of 15 to 20 per cent in 2008, but this is small pickings compared to a strategy at the forefront of Dr Robert's mind - doubling the size of the Sydney-based company.

Scary stuff. So more aggressive marketing coming soon! Without persuading people to have implants, their sales are hardly going to take a hike.

How are medical decisions influenced?

Recently Cuba announced that it had carried a CI on a child at 8 months, to quote:

The Spanish physician highlighted the Cuban attention and priority, treatment and solution given the curable illness [....]

So we are all ill then, and can be cured, become hearing! One immediately has to question where this aggressive strategy comes from? Do parents actually have time sort out their own feelings, and such a decision takes place whilst a baby even starts to communicate. The other thing, throwing around false claims such as cure, where does it come from: the manufacturers, the medics, or the media? A lethal mixture of all?

Can the surgeon's advice impartial, and free from bias? Are they receiving free gifts from Cochlear, and other such companies? Perhaps not the same incentives as far as alternatives go, since there's no money there either in the form of free gifts or dissemination of ideas.

Cochlear's new business model

Cochlear says it has come up with a new model:

"We've been changing our business model, moving away from just being a medical device company selling a device to a clinic, to also thinking about consumer advocacy, and indeed a world-class service company looking after the recipients."

On the surface of this, looking after recipients is good. However, one has to ask what exactly does this mean, an inventive way for covering up mistakes? Or is is to convince the shareholders this is an ethical investment to make? Or even an indirect marketing technique: look after those who have been implanted to go sell some CIs for you. Okay, I'm possibly being cynical here, but I don't take anything on face value and always question motives when money is the driving force.

When are people going to realise that market economics can't be the determining factors over changing a group of people. Economics partaking in a new form of ethnic cleansing?

See also:
Cochlear set to grow 20% in 5 years
Cochlear takeover bid by Medtronic possible

Shaw Stockbroking: Cochlear’s 25% rise in profit sounds good
Cochlear reports 25% jump in profit
Sky News Australia: Cochlear sales rise

August 9, 2007

BUAV guide to charities & animal testing, what about deaf organisations?

BUAV has published a guide, as to which charities are ethically sound when it comes to donating. It describes itself as:

to help animal lovers support health-related charities, secure in the knowledge that their donations will not fund animal research.

Such a publication has to be commended, and a step forward. It is interesting to note that the RNID is not listed so does this mean they fund animal research, and not suitable for BUAV's list? Their quest to eradicate deafness comes with funding animal testing through medical activities? Fund the UK version of this, perhaps?


As we know the CEO in waiting of the RNID - Jackie Ballard - is currently the Director General of the RSPCA, which promotes the welfare of animals. She's gone on record as supporting this, examples can be seen here and here. Will her new job contradict her old one?

Please use the comment box as to your views on the differences between cosmetic and medical testing, what is necessary and not. Are attempts to eradicate deaf people a necessary procedure?

One comment I do have to make about this guide is how it makes the distinction between funding research (which the guide focuses on) and the indirect support organisations perhaps give?

For example, NDCS is listed in the BUAV guide (see page 7), thus ethically sound and a good donation choice? (There should be a disclaimer here in the interests of transparency, Michelle Thew was once acting CEO of NDCS, now CEO of BUAV). NDCS as an organisation operates a policy of informed choice, and within this produces such publications as Quality Standards for Cochlear Implants. Whatever your views on CIs, quality standards are possibly ultimately about safety, and to ensure say a CI is safe, it will have been tested someplace else. Thus whilst not direct funders of testing, there is an indirect element here, and could be said riding on the backs of others?

CIs is just one example, and the same could be said for genetics, tinnitus even a new implant has been tested on animals in respect of balance disorders.

I do know that the same argument in respect of secondary or indirect effect, and part of a bigger system could be applied to many of the other charities that are listed on that publication, perhaps with the distinction without intervention a human dies, e.g. cancer.

Perhaps one could argue, if you can't beat the system or change the world (you are just one building block), just do the best you can to work with it. Or should people be promoting organic communication, and changing society? Where do you think charities should be the agents of change in respect of this. Who dictates direction: the status quo or the norm, or a minority group?

However, since the BDA is focused on sign language, how come its not listed? Or is that too obvious, but the point is there re promoting viable alternatives to communication, where no compromises have to be made. Or is the BDA secretly funding Koko now?(!)

My question is: where do you draw the line with support for animal testing? Where does support begin and end? Do you think deaf charities are supporting animal testing, either directly or indirectly? Would you give money to charities that fund animal testing? What do you think? Discuss.

BUAV Guide [PDF]
Third Sector

See also:
New RNID CEO: Jackie Ballard, Acting CEO Brian Lamb

August 3, 2007

Playing God reviewed by a Deafie

My (edited) review of Playing God is up now. See it if you can!


April 10, 2007

Cochlear Implantation Increases Meningitis Risk

Last week the American Academy of Otolaryngology Head and Neck Surgery published a study that the presence of cochlear implants increases the risk of bacterial infections that can cause meningitis in recipients.

As a solution to this, it is suggested "The discovery increases the need to educate the public on the need for meningitis vaccinations in potential cochlear implant recipients".

Why not just not implant at all? Where's the money to ensure alternatives are more attractive?

Yes I'm fed up of having to create CI entries, but it dominates the news. Where's the stories relating to BSL, and just general DEAF links? There's little or nothing, and kind of illustrates media bias.


CI to blame for death by meningitis

Continue reading "Cochlear Implantation Increases Meningitis Risk" »

April 4, 2007

CI funding in Wales again, a political football

A couple of days ago, Glyn Davies AM reported on the fact that someone could not get a CI in Wales, because of a lack of funding. He went onto state that this happened on the same day as Wales made prescriptions free for all.

Today Glyn Davies goes onto expand this case, by citing the consultant's letter and slamming the BBC for non reporting.

I fully expected the BBC to start the ball rolling - but No. For some reason, which completely escapes me the BBC doesn't think this is worth reporting. So I will have to do it myself.

Don't underestimate the power of blogging! Blogging is reshaping how information is spread, and the media is already having to respond to this, and re-examine how it distributes or reports stories. I already know blogging may already influence me, I want an open conversation.

Deaf coverage in the media, or rather lack of, I'm too familiar with. However, its a lot easier when trying to promote something the public can generally identify with, i.e. lack of hearing, than it is for something like BSL. However, I'm surprised BBCi Mid Wales' pages / their Aberystwyth office has not picked up on this, as their news items move way too slowly for my liking.

Glyn, have you tried the regional press (for other readers the County Times, Cambrian News and the Shropshire Star)? Sometimes the national press picks up on later. Have you approached BBC See Hear?

This is the consultant's letter:

Dear Miss Price,

I am writing to update you on the current situation regarding the funding of your cochlear implant.

As you know, Health Commission Wales recently produced a document which denies cochlear implants to all adults in Wales apart from those patients who had previous meningitis (a minuscule proportion of the total). I went to see the Minister of Health (Brian Gibbons) on 5th March 07, to protest about the situation, and was left informally under the impression that he might be able to help. Sadly, in response to a question in the Assembly today, he has confirmed that Wales will not be providing cochlear implants to nearly all adult patients.

Wales is therefore the only home nation to deny this treatment to deaf people. Cochlear implantation is a well established treatment that is more cost effective than renal transplantation or coronary artery bypass grafting, there is no effective alternative treatment and in my view this policy is cruel to people like yourself having to cope with the handicap of profound deafness.

Having failed to help you through the appropriate channels I see no alternative to publicising this outrageous situation prior to the Assembly elections in May. We will be mounting a campaign via the good offices of the Royal National Institute for the Deaf. Please let me know if you are happy to be contacted by the media. In the Meantime please feel free to act independently and contact your local Assembly Member/Member of Parliament.

I know that this news comes as a devastating blow to you, but please don't give up hope. In the long term having Wales behave like a third world country is not a sustainable situation and I believe it is just a matter of time before we get this decision reversed. Kind regards

Yours sincerely, Jonathon Osborne, F.R.C.S, Consultant Otolaryngologist.

Incidentally this person lives just 5 miles from me. When I bang on about issues, I won't criticise individuals, and try and confine my irks to structures. All I can say is good luck to Andrea.

I should also add here, I had exactly the same issue re CIs in 1993, and lack of funding from Wales. And the same hospital too, and probably the same GP practice! I was later shoved in the ENT system in Birmingham (I was at university there). Got caught up a fight between two health authorities. I never got a CI, and I wouldn't get one now. However its interesting from a funding perspective and how politics doesn't move in 14 years even if we now have a Welsh Assembly.

However, what deeply disturbs me about this consultant's letter, and whilst he's trying to get what he wants, its irresponsible. My other question, knowing full well how things operate within Powys: immediately I have to ask what other support is this person getting? The fact that the consultant goes onto state, "there is no effective alternative treatment" scares me. From a hearing viewpoint, perhaps he is correct. However, cochlear implants do not make a person hearing, and secondly is communication being addressed. Especially as a wider communication issue in Llanidloes and Montgomeryshire. The fact that social services for deaf people in Powys has not been reviewed in decades, it is in the process of this (reviewed by a person with no prior knowledge of deaf / hard of hearing people!) and has little / no user consultation. They are starting to change, I hope.

The "good offices of the RNID" are the same offices who are not rolling out funding for interpreters in Powys and a blanket solution applied to the whole of Wales when it comes to funding for BSL. Powys has been the only county to miss out on the £2.7 million, because it is deemed as rural, and noone actually recognised or had the foresight that you cannot apply Cardiff solutions to rural areas. Also, I'm concerned about their very lack of deaf involvement in mid Wales, and their project at Rhayader. The project name, "Hear to Help" is rather patronising in tone, and does not afford an image of empowerment. Such images in mid Wales does have an effect on people like me.

Going back to the issue of CIs, again my question comes back to, should public services be funding outrageous profits of the private sector? Is information balanced? What are the alternatives in mid Wales as far as communication and a holistic approach to deaf people goes? Does the Welsh Assembly really understand d/Deaf and hard of hearing people, and are they listening to THEM (not unrepresentative organisations) across Wales? I fear not.

Update: Glyn Davies reports:

UPDATE - I am told that the Minister Brian Gibbons has now allocated £750,000 for the provision of cochlear implants for adults. The consultant, Mr Osborne has contacted me to inform that the Minister's decision will now allow Andrea's treatment to go ahead, which is great news for her and others in the same position.

And in his comments he says:

Minister has decided that £750,000 will be made available for Cochlear Implants in the next year. Andrea's consultant now thinks that she will have implant in next few months. My office has just had an email from Andrea which reads as follows.

"Oh, my God. I am soooooo pleased. ......I can't think at the moment I am so happy. Thank you and thank Mr Davies for me, and wow....!

I don't know whether my questioning had anything to do with the Minister's decision, or whether it was something else that persuaded him to act on this. And it is too soon to know whether this sorts out the issue. But its this sort of thing which makes an AM's job worthwhile. Cheers Brian.

Previous relevant posts:
CIs not value for money?
Cochlear set to grow 20% in 5 years

March 31, 2007

Cochlear Implants not value for money?

Wales is to get £750,000 for its cochlear implant programme, to implant 20 adults in 2007-08. That is £37,500 per person, this represents a 60% increase in the CI programme. From these figures, Wales implants 33.33 people each year. Wonder how they give 1/3 of an implant to some random person? This means that the Welsh Assembly is currently spending £1,250,000 per year on cochlear implants for adults. Children already have their own money.

The funding for interpreters in Wales is a shambles, with £1 million £2.7 million as a one off cost, and not spread throughout Wales. Where is the recurring funding for BSL? And this funding for BSL is for BOTH adults and children. Unequal money, certainly. The lack of funding in this area, especially in rural areas (currently none of the £1 million is reaching Powys, why?) means that people are being pushed unnecessarily towards an medical route, because viable alternatives are not being made available.

These people who are going to get CIs, are deaf and will probably still use communication support. Cost per head is expensive.

The Welsh Assembly seriously needs to get its act together.

Update: for international readers, this is public money. i.e. the taxpayer is paying 100% for this, not some insurance company. See previously here and here, should public money be inflating a businesses' profits, shareholders dividends, and director's salaries to a huge degree? Cochlear is on a 20% growth strategy, because they can see there is money to be made. The taxpayer is paying for these perks. With such an aggressive marketing strategy in mind, are alternatives even taken seriously or just token to create the illusion of suiting some health policy? The inequality around funding especially for alternatives, and how this filters through into the voluntary sector, is kind of a no brainer. Public funding feeding this approach, is questionable and perhaps irresponsible.


Continue reading "Cochlear Implants not value for money?" »

March 30, 2007

Cochlear takeover bid by Medtronic possible

The New York Times is carried an article on a possible takeover bid for Cochlear by Medtronic.

The chief of Australian hearing implant company Cochlear Ltd. said Thursday he had "no idea" if U.S.-based Medtronic Inc. is interested in taking it over, but that such a bid was possible.

Broking house ABN Amro said in a research note Cochlear could be an "attractive takeover candidate" for Medtronic, which is currently seeking acquisitions.

The article then focuses on share prices:

Cochlear's share price has more than tripled in the past three years .....

Cochlear shares traded at around 63 Australian dollars on Thursday, valuing the company at A$3.46 billion ($2.8 billion). ABN AMRO has a A$57.25 target price on the stock, raising it this week from A$54.50 to take into account the possibility it may be a target.

See previously: Cochlear set to grow 20% in 5 years.

March 9, 2007

Cochlear set to grow 20% in 5 years

Cochlear's marketing tactics, and aggressive business strategy has hit the news again.

Cochlear's CEO, Chris Roberts says:

... the company has 70 per cent global market share and the current Cochlear implants only cover 10 per cent of the available market.

Note the word of 'only' in that statement, and already sets the intentions of a business to expand. He goes on to expand on this, stating clinical need:

"There is a huge unmet clinical need out there and it's up to us to organise ourselves and just go out and capture it. It's there for the taking. We can help so many people and it's a tragedy that we're not (doing it)," Roberts says.

Is this really about clinical need, and does he really care about deafness at the end of the chain, or is this about business and marketing strategy? Why is it defined as clinical need, can the man even sign? His confusing business strategy, and ultimately profit, with medical need (why the medicalisation of us?) is outlined here:

"We've challenged everyone in the organisation. When we're doing a billion dollars of revenue, what will you in the finance department look like? What will the supply chain look like? We're not designing a supply chain for a business today, we're designing a supply chain for a billion-dollar revenue," he says.

The Australian. Also see an earlier paper on Pulling the Cochlear Industry Apart.

Which leads me onto a point I've made many times before, around voluntary organisations purporting to offer a philosophy of informed choice when it comes to distribution of information, such as NDCS. Since a group of scattered individuals cannot compete on the same level playing field as a multi million dollar industry, and do not have the funding streams for mass market campaigns, then how can information be balanced in the first place, if information being presented in the first place is not on a level playing field? There is also framework to consider here, how the medical field attracts a lot more funding than sign language does. Deaf culture and indentity attracts little money by comparison. What are organisations doing to put pressure on the industry about this? What about the acknowledgement that information cannot be balanced?

February 6, 2007

CI to blame for death by meningitis

Doctors have attributed a cochlear implant for a 7 year old's death:

Girl Dies Of Bacterial Meningitis

OMAHA, Neb. -- An Omaha girl died of bacterial meningitis over the weekend after deteriorating very quickly.

Katie Engle, 7, was a second-grader at Washington Elementary School. Her mother, Roxanne, said her daughter came home school on Friday not feeling well. She was dead the next day.

"She was happy one day and I took her to school and it went down hill from there," Engle said.

The first symptom -- a headache -- showed up a few days earlier. Katie was admitted to a hospital on Friday. Engle said her daughter didn't have the other symptoms associated with bacterial meningitis, which include vomiting, fever and lethargy, until she got to the hospital.

Doctors at Children's Hospital hydrated Katie, Engle said, and then she started to feel better.

"She takes her pulse thing off and says, 'I'm all better now. I want to go home,'" Engle said.

But the meningitis had caused Katie's brain to swell, and that ultimately killed her, Engle said.

Doctors said bacterial meningitis is not contagious. They believe it may have been caused by Katie's cochlear implant. They said it could have been prevented with a vaccination.

"I had tried and they were always out," Engle said. "After going back several times, I forgot about it."

The family donated Katie's organs.

Engle said Katie has seven siblings. The family has set up a memorial fund to cover funeral expenses at Security National Bank branches around town.