Story From India

[Lizzzie]

Genuine story from the FRONT - no less - of the Hindustani Times last month: (to the effect that) Man dies after having had insulin-dependant Diabetes for 37 years.

This was a 'feel-good' story: about how well the man had done to live for that long and how lucky he was and how good at controlling his illness.

Crikey, if I only live another 37 years I don't think it'll even make the local press. I EXPECT to live another 37 years, dammit.

Whenever I'm feeling low about being diabetic, I think, it could have been worse. An Indian woman my age could have come down with diabetes instead and she wouldn't have had half of the chances I've got.

 

[Einstein]

It's not that many years ago the life expectancy of diabetics the world over was months to a few years.

That's the main reason diabetics originally didn't pay for prescriptions, they weren't expected to live that long.

Before insulin, 'the best treatment' was to eat nothing, therefore the body wasn't assaulted by carbohydrate - so we'd starve to death instead.

In many developing and poorer countries around the world where only the rich can afford healthcare conditions such as diabetes must still effectively be a death sentence.

I've seen the changes first hand over the past 30 plus years since my grandfather was alive and injected three times a day. He'd spend at least two periods of a fortnight ago in hospital being stablised because of his regime. And he lived a very strict diet, my grandmother made sure of that!

Injecting with hyperdermic syringes, sterilising needles and syringes, sharpening the needles, urine testing and not with test strips, but test tubes and tablets etc.

By the time I needed insulin the needles were one quarter of a millimeter in diameter, 8 or 12mm long and the needle and syringe were sterile one use - I actually still prefer syringes, far fewer bruises that with a huge pen.

Of course Levemir and Lantus have come on the scene impacting the need for pre-mixed insulins or mixing them on demand and all that entailed.

But I'm sure in India these technologies aren't available to everyone and there isn't, despite our grizzling, the healthcare and provision to protect them from the known complications we know of and are screened for every year.

Makes you stop and realise how lucky we are, even with the Dr Twits in the system. And before I dig myself into a hole of political incorrectness I'll leave it there 🙄

 

[Copepod]

makes things look not so bad in UK now...

And things are possibly even worse for girls / women with diabetes in India than from boys / men - see http://www.iddtinternational.org/india/index.htm if you want to help.

If you look at the list of conditions that qualify for Medical Exemption Certificates, it's more about long term continuous treatment outside hospital than expecting people not to live too long -
?A permanent fistula (for example caecostomy, colostomy, laryngostomy or ileostomy) requiring an appliance or continuous surgical dressing.
?A form of hypoadrenalism (for example Addison's disease) for which specific substitution therapy is needed.
?Diabetes insipidus or other forms of hypopituitarism.
?Diabetes mellitus, except where treatment is by diet alone.
?Hypoparathyroidism.
?Myasthenia gravis.
?Myxoedema (hypothyroidism requiring thyroid hormone replacement).
?Epilepsy requiring continuous anticonvulsive therapy.
?Continuing physical disability which means the person can't go out without the help of another person. Temporary disabilities do not count even if they last for several months.
(From http://www.nhs.uk/nhsengland/healthcosts/pages/prescriptioncosts.aspx
) Cancer was added to the list on 1 April 2009.
When diabetes was added in the 1960s, only insulin (administered with reusable glass syringes and sharpened needles, long before disposable syringes, then pen devices) and tablets were included, as it was long before home blood glucose meters brough the need for strips & lancets. Apart from that, the list was not revised since the 1960s, I think, when, for example, most people with severe mental health problems, stayed in hospitals, where drugs were dispensed. Other chronic health conditions eg asthma, which often involves at least 2 types of inhalers, do not attract Medical Exemption Certificates.

So, although the NHS system is nowhere near perfect, we're a heck of a lot better off than in India today or UK 40 years ago.

 

[Northerner]

...So, although the NHS system is nowhere near perfect, we're a heck of a lot better off than in India today or UK 40 years ago.

We're a lot better off than that most wealthy and advanced nation, the US of A, too. There's a discussion over on tudiabetes about how much people pay for their insulin. Without adequate insurance over there the cost can be as much as 100$ for 5 penfills - at least twice what the cost would be here, I believe. The drug companies simply charge a lot more because they can, because it is mostly paid for by insurance companies, which in turn will charge higher premiums to employers, or have unfavourable 'co-pay' arrangements, where the patient funds part of their treatment. Some people will hestate to leave jobs that they may hate because they have good insurance at that job. Some people pay up to ?1000 a month for their insulin and other sundries.

I imagine that, in this country, the drug companies get a much lower price for their insulin etc., since they are essentially dealing with one customer, the NHS, who are buying in huge amounts and should therefore get a much-discounted price.

Whilst I appreciate the need to find research, I find it immoral that a life-saving treatment can be priced almost beyond someone's pocket in a country as rich as the US.

 

[Peter C]

Whilst I appreciate the need to find research, I find it immoral that a life-saving treatment can be priced almost beyond someone's pocket in a country as rich as the US.

That's exactly why the British Diabetic Association ( now using the operational name Diabetes UK ( its still the BDA)) was founded in 1935. To campaign for the right of access to insulin of every diabetic that needed it irrespective of income,class or whatever. Fortunately that campaign was won.
They moved on to campaign for an NHS so that all diabetics had access to proper medical care irrespective of ability to pay. They won that campaign as well.
It's just amazing to hear people ask "what has the BDA/diabetes Uk ever done for us ?"

 

[Einstein]

There are many people who championed many things long ago, that we take for granted.

Diabetes UK today seems to be accountable to very few people, changing members into supporters, really effectively championing nothing.

They will claim the disposable insulin syringe on the NHS, perhaps the pen. The truth here is the manufacturers are held to a system of open bids and target price tarrifs that sooner or later the manufacturers would have gone that route and perhaps only a few months slower than with DUK being involved.

It's like the RNID claiming they 'forced' the NHS into using digital hearing aids, rubbish, the cost of production of digital is lower, reliability greater, advantages to user increased and the NHS tarrif on they due to the sheer volume they buy each year is great value.

Where is DUK on the issue of prescribing test strips to type 2's and ensuring supply is uniform across the country?

I can't hear them, nor can I see them.

National charities can't sit back and say we did x, y and z 60 years ago, then a bit more 20 years ago and do precious little since.

DUK spends millions each year on R&D but rarely makes a song and dance about the success of this research, indeed, rarely say much on all the research projects at all. They have salary bills for 2007 of over ?6m!

In this digital age their web site is terrible, difficult to search, hard to navigate and empty of useful content that diabetics want.

Their connection with their members 'Balance' is dated, biased to type 2's and is anything short of a must read journal to arrive.

It's time as a charity they stop blowing their donors money and start to listen to the problems of real diabetics in the UK.

They have their own forum, we're here. Now they may snoop around, but I am aware of only one post from anyone at DUK. Perhaps there are some I've missed or that are in areas of the forum I don't venture.

A forum is an open area of discussion, a place to learn, exchange information, model ideas... they have the resource at their finger tips, seemingly it's not used.

It's time as a charity they sit up and listen to their 'subscribers' and look at the needs of diabetics in 2010, not what DUK thinks are the needs, but listens and responds. Until then I think a number of their loyal supporters will continue to drop off. There is no point in supporting something that does nothing for you.