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Is treating HIV like Diabetes such a good idea?

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Posts: 122
Is treating HIV like Diabetes such a good idea?
Posted on: November 6 2012, 06:30 am

See this report on the BBC web site

http://www.bbc.co.uk/news/health-20210823

Diabetes care depressingly poor, say MPs
By Nick Triggle
Health correspondent,
BBC News


The standard of care for diabetes in England is "depressingly poor", causing unnecessary deaths and disabilities, a parliamentary committee says.
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Fraser Serle
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Posts: 12
Re: Is treating HIV like Diabetes such a good idea?
Reply #1 on: November 6 2012, 08:30 am

I think patient care for lots of LTCs should learn from HIV sector.
However I find comparisons between HIV and other LTCs unhelpful.
Most LTCs have some form of stigma however none as much as HIV.
I'm living well with HIV but I know if I had cancer or diabetes I could be much more open about my condition.

Fraser
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Larry Gurney
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Posts: 1
Re: Is treating HIV like Diabetes such a good idea?
Reply #2 on: November 6 2012, 03:01 pm

Something seems to have gone amiss, as we have used this comparison over the last few years and yet there is a mismatch in people’s perception of how easy it has become living with HIV as opposed to how easy it is to treat it.  Fundamentally there is a serious failing in the education of the generation in power the forty something’s who are of a generation in which HIV was a topic of debate and to some extent many of that generation, in my opinion, are more "forgiving" of those of us living with HIV.  I use the word forgiving in a way that suggests understanding tainted still with side order of stigma.  However the younger generations have not had the debate and have not had the education and they in many cases I  have found can be quite vitriolic in their attitude.  I would rather they discuss with those with diabetes if their illness has ever caused them  when searching for a relationship if disclosure of their illness ever leads to the individual running or wiggling very fast out of their  the virtual room or real company.  I am “lucky enough to have three comparisons, Cancer, HIV and HEP C the first allows you to peacefully talk and get random acts of kindness, the second  is the elephant in the room and either shits a large dump in the corner or becomes a hat stand, the latter well join a leper colony.
 As an individual living openly with HIV I find often that two scenarios play out either I become the  punch bag of those who maybe have had a bad experience and get called "AIDS fucker" "you people should be shot" or I become the cushion which some want to ask and be counselled about their relation and sex lives.  The later I am happy to accept most of the time although it gets a little difficult at times.  To be perfectly honest a person with diabetes or any other illness apart of course the great HEP C lepers out there at least  has the capacity to discuss and ask for help from the people around.  Psychologically HIV still in my opinion  leaves you as damaged goods.  It is a condition  which I personally feel there is little or no chance for discussion and support it is a spectre.  Even the “ Professionals”  GP's and consultants edge around the issue unless of course I am at my HIV consultants space but these days even that “special relationship” has been damaged by cuts. 
So the mismatch is in our perceived view of treatment (as the only significant issue in articles such as the one posted on Diabetes) and the attitude that still leaves HIV an illness under supported, and  sidelined  in health discussion )  I personally feel a vast sense of isolation and prejudice as a person , even a strong one living with HIV. But recognise however that I do live in the last frontier of the Roman Empire and the north east is provincial in outlook. 
 A disease is not only the physical,  in this case it still remains a large portion of the psychological.  I wish whoever came up with this silly idea would stick their head back in the sand or at lease talk with a few more on either side of this definition.  In the 80’and 90’s there was more a voice, after ten years away in Africa working in HIV I personally feel we have gone backwards.  That is reflected in late diagnosis, increased morbidity and certainly as far as I am concerned a serious lack of dignity and self value.  Where are all these organisations and what is their job these days to alter the perception or even to keep up pressure on how we are perceived. 
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Robert James
Member
Posts: 124
Re: Is treating HIV like Diabetes such a good idea?
Reply #3 on: November 6 2012, 05:42 pm

As I wrote an article on this in HTU some years ago I feel a bit responsible for continuing the comparison between these two conditions when perhaps I should have shut up and hoped it went away.  It really all started in 1992 with Bob Rafelsky, an ACTUP activist, who was just hoping for some drugs that would turn HIV into a chronic condition.  He was not saying that if it ever happened then we should have the same system for treating them. 

I actually think it would be more helpful if we stopped talking about a comparison with diabetes - no one ever argues that we actually should treat HIV the same as diabetes anyway and it can trivialise diabetes as some minor condition when it is not -  and started talking about other long term conditions that only affect a similar number of people as HIV instead.  Something like multiple sclerosis.
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