xxxx hi,

Actually I have only been a member myself of UK-CAB for the past 3-6 months myself, this is the first time I have responded and thought that the news of the new salvia test was appropriate to say something, I have been advised today that this test is to search for a marker only, how that differs from the blood test, I am not sure? And that an actual HIV blood test is still required for real confirmation. I would also agree developments have been made by the interventions of patients and the NHS to better the treatment for HIV. I myself have seen and read various articles over the years with the development and personnel perspective living and changing with HIV.

In regards to the prevention, marketing and promoting HIV and sexual health, my suggestion would be to present a new campaign marketing HIV such as a life long condition that consists of daily medication and a day of days in which you might be dealing with diarrhoea, nausea, peripheral neuropathy, pain, heart complications, sleep problems etc…. just to name a few instead of the old adverts of HIV=Death, though this will be negative from the pharmaceutical point of view, the real clear image needs to be shown, once when the reality sets in and a person truly comes to understand what will be asked of them, the perspective will change.

Whist this was not available when I was diagnosed 7 years ago, the HIV London community now offers a 12 weeks introduction course to discuss the issues that arise from HIV, which allows the newly diagnosed to discuss and be informed of what is required, I am not sure if this has been implemented nationally, though only through ones own experience will different questions be raised, pathways be sought and needed to deal with the complications that arise, what ever they maybe. Regarding the news article from Switzerland that raised the point of sex with an undetectable load; they did forget to say what is required to get to an undetectable load!

I submit and volunteer to the website http://tcell.org.uk which is an online website that covers topics such as A.A, DLA, ESA, social care, rights, entitlements and responsibilities and covers items that are in the news, available too anyone in the UK. I also have come across information being distorted even within London community, sexual heath centres and other places with regards to DLA and HIV, these topics will be different to each individual person, though only 7,310 people, at May 2008 were listed under HIV/AIDS upon the Dept. of Works and Pensions static’s. Though 3m plus claimed DLA in August 2008, sorry to say these figures are no longer available. 

Just a few financial figures: the Dept of Health figures have been updated and is not the £19.3m originally quoted (2008/9)

 
Social Care provision £ allocation   Year   Amount £   Persons HIV   £ per person
            
Dept of Health    2003/4        16,500,000.00            55,000.00                 300.00
Dept of Health    2004/5        16,500,000.00            55,000.00                 300.00
Dept of Health    2005/6        16,500,000.00            55,000.00                 300.00
Dept of Health (increase by 10%)   2006/7        16,500,000.00            60,500.00                 272.73
Dept of Health (increase by 10%)   2008/9        19,800,000.00            66,550.00                 297.52
Dept of Health (increase by 10%)   2009/10        21,800,000.00            73,205.00                 297.79
Dept of Health (increase by 10%)   2010/11        25,500,000.00            80,525.50                 316.67
            
National Aids Manual   2006/2007          1,312,835.00       
GMFA   2007/2008             842,432.00       
Crusaid   2007/2008          1,933,650.00       
The Food Chain   2007/2008             440,765.00       
Positive Women   2007/2008             720,167.00       
THT   2008/2009        15,816,000.00       
National Aids Trust   2008/2009          1,032,165.00       

I understand that there are guidelines that are to be followed when testing for HIV, though by disseminating some of the myths that still float around might help the increase of testing for HIV and would help reduce the numbers, their is also the problem raised with GP that could dismiss HIV for something else if the right questions are not asked, this does raise the issue of disclosing one sexuality to your GP and will be noted upon your GP file, if the patient is recorded as +ve means disclosure. I also understand that counselling is meant to be provided when a HIV test is carried out, this is something that may not be available or want to discuss with a GP.

Like ourselves Michael through experience we can channel this to improve things for others and ourselves by the continuation of topics like these online and through publications printed dealing with HIV/AIDS and also by the peer group and forums that exist from Parliament to local. Turning our experiences, realities into action, so that others can see the true light of HIV life and the complications that it brings other then medical static’s and jargon that is used by the various medical professional and others, which ourselves need too understand, manage and even cope with.

Not wanting to plug Tcell website again, you may find this interesting http://mentalhealth.tcell.org.uk/forums/uk-young-lack-awareness-hiv

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Hello Kevin

I would really like to answer or at least contribute to the above two issues.  I must add that this is my first ever contribution to this forum (UK-CAB).  As a person living with HIV and have been for nearly 26 years - find that all the research and scientific changes in almost 10-20 years.  I even remember a Sunday Times double page pull out mentioning the "Cure" for HIV - this was of course AZT.  Admittedly there have been some remarkable contributions from all the different chemists and scientists look at helping people cope with their illness and manage their CD4s and Viral Load.  Yes this is all very good, but.

Yes there is a but.  Can anyone really justify the cost also put on prevention messages, which for me and only if I was recently diagnosed and I accept its all about responsibilities (individual and collective).  I do not want to here if in six or 12 months I have HIV and my viral load remains undetectable then its OK to have unsafe sex or why do you do it like the porn stars do - withdraw before you ejaculate.  Does anyone need to hear mixed messages.  People undiagnosed have rights and people living with HIV have a responsibility - even two positive people have the same kinds of responsibilities protecting each other from other sexually transmitted infections.

I live in ********** and to my knowledge we have a serious concern re dual infections like HIV and Syphilis; HIV and Hepatitis B & Cs.  Maybe I'm waffling on to the converted and the on lookers, but I feel we people living with HIV and those in the know (professionals and semiprofessionals) need to challenge the government to put more money into prevention.

But now going back to the point of self-testing and mouth swabs to find out if your HIV or not.  I feel is quite dangerous and I think I would be patronising all the readers including yourself if I was to make a list of all the negatives using this method to find out how many people in the UK are HIV positive.  I would however like to mention one very serious point and to all this is a very personal point.  Before I became HIV positive I had and still have a history of mental health problems (due to very personal reasons), and when my ex-partner (now passed away) told me he had the "AIDS Virus" as it was widely known - it took me nearly 6 months to go to the clinic to be tested and as we all know it was called various names like "GRID", "LAV", HTLVIII and then finally HIV.

I've attempted several suicides again a constant cry for help.  But now after all these years my depression and anxiety has turned into anger and more anger.  Anger at the people responsible for information and guidance in this issue.  I also often hear even by the young people of today at various meetings I attend - its OK theres a pill or two that can help.  More money going to the pharmaceutical companies - who often feel a little guilty and give little funds to those who directly need it people like me.  Sounds selffish, but its not meant to be - there are many people living with HIV in this country living in poverty and no proper benefits with all the benefit reforms.  Granted some people may be well enough to work, but everyone is not.

To the point of self-testing and all the money injected into the promotion of this method of collecting and find new individuals living with HIV, could be better spent on a prevention campaign not just HIV prevention, but sexual health and well-being prevention this then properly looks at the whole person instead of the act.

Other than all my waffling I found your entry informative and good and thank you for reading my waffle.

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The only true winner for the increase in the rise of HIV is the pharmaceutical companies; you need growth in sales and demand to see profits grow! the NHS for who also might have over bought stock in medication, so that it is not a waste of tax payers money, the very real losers are those who have to live with HIV, the medication side effects and the turmoil that it brings along the way or not in some cases.

Can I also point out though HIV has been around for 25 years, 10 years with medication, though I don’t belittle what so ever those persons who lived under different times and circumstances, we are even slower within ourselves to be responsive with the disclosure of information, help and support within our own community, some of that is changing.

You might also be interested to know that £19.3 million (2008/2009) plus local budgets get spent within local communities for HIV and extra £3m is also allocated for housing issues, yet doesn't even have a take up from local authorities and there is then there are the budgets for the NHS, PCT, GP's, medication, other supportive staff on top of the this monies raised from charities with the aim to support within the community, all of which are meant to all work in partnership? I suggest that even the largest population of HIV people live in London, it should be easy to promote and provide an equal standard of practice for the select groups of children, women and men respectfully. 

Let’s also look at the appalling way, that we ourselves live and respond to HIV on the monies received from Government and spend on HIV support, services, medication, promotion etc. HIV & death has not gone away from the constant reminders I am repeatedly told within our own HIV community, yet funding issues and other perspective seems to be the topic of the day and in a life were £££ speaks before the consideration of a free helpful hand to a fellow man/women/child through support, advise, assistance, lets also not forget the adventures that still awaits people that will become HIV+ in the future.

A recent investigation has found that even within our own HIV community under the heading Not for Profit are making the opposite (Profit’s), yet some 55,000 are known to be affected with HIV within the UK, yet let’s continue to look create a better opportunity, resource and structure from our experiences and lives.

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With the resource of saliva testing now being promoted from St. Barts NHS Trust (HIV saliva test available on NHS) story available on http://benefits.tcell.org.uk/forums/hiv-saliva-test-available-nhs-bbc-website this could be made more widely available too all of the UK GUM/Sexual health clinic, it would be easier to administer, quicker and could be included as part of the general testing, people could also have be option to take the test home and complete it in the own privacy (just a suggestion) it could be earmarked for chemist counter sales etc. 

Also money could be obtained from THT to help with the adminstation, promotional costs, purchasing the kit etc. There income for year was £15,816,000.00 2008/2009.

A further look and analysis at the HPA figures, a study of the number of patients also too look at the current models of advertisement, is this the best target opportunity, what other methods could be promoted etc.