Saturday, 31 May 2008

The Press - What do I want to say??? If only they would listen!!!!

I wrote this below about what I wanted to say to the Media if I can get in any !!

Points I want to make Re HIV in General - Notes –
Monday, 26 May 2008

1./The necessity for routine testing:

If you are ill in the UK and go to your GP ......................... you may get some tests

If you go with perhaps:

  • severe flue like symptoms, high temperature nausea, diarrhoea and a rash ( which many get when they sero-convert i.e become HIV positive up to a month 8 weeks after initial infection with HIV) or on going symptoms of extreme fatigue, nausea, diarrhoea, rapid weight loss or gain, swollen glands, ( psoriasis is very common for those with HIV, plus unexplained rashes and very dry skin ) constant infections, memory loss, eye problems, thrush, cystitis, breathing problems, heart pain, skin problems etc

(all can be part of living with HIV if you are untreated, I had both a severe seroconversion illness and then many of those ongoing symptoms but was often ignored by my doctor and when I was given any tests it was NEVER an HIV test, as you have to request this specifically and it never occured to me or my GP - yet I have been HIV + for some years!!)

You will however quite often get as a first line of investigation tests that may include tests for:

  • diabetes, thyroid, cholesterol – under or overactive, anaemia, electrolytes, in older men tests for prostrate cancer or enlargement, a chest x ray for breathing problems, women may have a cervical smear and or a mammogram, cystitis, blood tests for blood counts and an any number of other tests depending on your symptoms.

My husband had most of theses, except the ones for women's bits – and I have also had many of them over the last year or two but nothing showed up to explain why we both did not feel well!!

The one test YOU DO NOT GET UNLESS YOU ASK FOR IT IS A HIV TEST??? And HIV DOES NOT show up on any of theses other tests!!!

There used to be some reasons why you may not want to test people without them asking for a test and have to tell people they had HIV without them actively wanting to know –

  • As there was no real help for those with HIV and everyone without treatment was likely to/would eventually get AIDs and die -and knowing you had HIV, before there was effective meds to keep AIDs at bay, would not then change the outcome - but it could have prevented you infecting others!!
  • There was also the fact that HIV was seen as being something only people in high risk groups got and therefore only those who took sexual risks i.e gay men, those who had anal intercourse, multi consecutive partners, not using safer sex, changing partners frequently, or used drugs would get .
  • So for a doctor to suggest a test to someone who did not feel they had taken a risk themselves for HIV, was seen as a doctor over stepping a persons privacy and perhaps undermining their reputation.

But theses days we could all be at risk - and in the UK, when HIV Antiretrovirals are available that will keep you as healthy as possible with HIV there is no rational I can think of for not doing routine testing – except perhaps the stigma?

As if you have HIV – you are actually more likely to get all of theses health problems anyway i.e. thyroid, diabetes, heart/artery problems, abnormal cholesterol, and cancers of many kinds happen more often to even treated HIV people - so the more medical care you get and as early as possible, the better!!

With medication you have some chance of avoiding the worst of them and living out the rest of your natural lifespan, and has healthily as possible without too many of the complications of HIV such as the cancers, eye problems, brain damage, opportunistic infections that HIV people do get even before they have full blown AIDs

Without HIV medication you will still now eventually progress to AIDs and you will die!! There is still no other end to untreated HIV!! So it makes real sense to get a test and know as soon as possible?

I actually suspect that without routine testing people may well be dying of HIV as a primary cause but on their death certificate will go things like pneumonia, heart disease, artery disease, cancers, as the cause of death. But the reason they had theses illnesses was because they had HIV – because they were not tested for this would be a fact that not even their doctors knew

2./Telling our Story

I hope that telling our story will be told in the way that would be of any use to us in trying to help others avoid our situation, or to open the debate about changing HIV testing in this country, reducing stigma and 'educating' ordinary heterosexual couples and married people that this IS an issue for them to be thinking about.

3./At least a 3rd statistically who have HIV in the UK do not know they have HIV!!!

And theses are the ‘official’ statistics so you can be sure the number is probably higher.

Older heterosexual people- over 40 - are now statistically more at risk of STDs in general and probably HIV

When those of us over 40 they learned about STDs the risks were fewer and HIV did not exist, or was rare in the heterosexual community. Taking precautions against HIV is therefore NOT second nature to the 40 and above generation of heterosexuals

Many older heterosexual people are sexually again active and changing partners in their 40s upwards – maybe due to a death of their long term partner, divorce or perhaps simply boredom or wanting to have other relationships after so long with one person.

But in my opinion they may not consider it necessary to request an HIV test. We did not either!!

And I used to work as a youth worker running HIV awareness events for heterosexual young people and even I did not consider it until my husband was so ill I felt nothing else could explain his symptoms

My husband nearly died because there is no routine testing for HIV and currently in the UK you have to ask for a test.

That you can in fact be very ill with HIV and unless you request a test you may never know you have HIV? And that some may even be dying of this as on their death certificates, i.e death may be attributed to secondary infections like pneumonia or the range of cancers untreated HIV people are particularly prone to and not HIV!

We did not suspect we had HIV so we did not ask so my husband got AIDs.

If we had known and got the HIV medication early enough with modern medication you may never develop AIDs. But without HIV medication everyone with HIV develops AIDs eventually and without treatment dies. If you get treatment late and not within the first few years of infection, your life expectation will be compromised and your quality of life, as I believe my husbands has been and to a lesser extent my own!!!

I want to tell the story because I wanted to make the point to the public and hopefully to the medical profession that routine testing was not done and should be and this should be something that is put onto the public agenda and started to be considered!!!

And that many people may not know they are HIV positive until their health is badly compromised and that especially older and heterosexual people may not know what risks they are taking and some may die without knowing they have HIV - people who could have still lived a long and fairly healthy life even with HIV.

4./Cervical cancer is sexually transmitted disease that carries no stigma? Why is HIV so differently treated by both the public and the medical profession?

What is the logic of HIV being treated differently even by the medical profession with stigma and other factors meaning there is not routine testing

When other sexually transmitted illnesses such as cervical cancer have been tested for many years routinely – via a smear test at your local GP surgery?

Cervical Cancer has long been known to be mostly sexually transmitted by a virus and they have now identified the virus that causes it

It is HVP

As the main type of cervical cancer suffered in the western world is now known to be caused by HPV the virus that causes genital warts in some.

Medics are so sure about this they are rolling out a programme this year to get all young girls of 11, before they are sexually active, immunised against the HPV virus. So that this next generation of women will not have the risk of cervical cancer that previous generations did.

HIV can not be immunised against but it can be routine tested for and detected early

And as far as transmission is concerned this will prevent it being transmitted as often.

As an HIV person on HIV medication is often considered to be ‘virus undetectable’ which means there can be little of no virus in their mucous fluids and therefore they are very unlikely to be able to pass it on, even with unprotected/ unsafe sex!!

A really good reason to detect all with HIV and treat us all as soon as possible!!!

5./Women’s HIV Network in Cornwall

I started this because as a women with HIV I was not able to talk to a single woman with HIV when I was first diagnosed – KPS Kernow Positive Support is doing a wonderful job in trying to support people with HIV but they understand that women with HIV find it harder to come forward than men of all sexual orientation – many have jobs , many have children in primary and secondary school – and therefore women with HIV are the most unsupported group.

Many groups exist for men up and down the country but only one for women – Positive Women – in London
But if you live in Cornwall accessing their services except by phone and email is impossible.

Therefore KPS are trying to look for funding to start this woman and peer support network.
It is badly needed especially when you are fist diagnosed. I wanted desperately to speak to another woman with HIV when I was first diagnosed but just could not find anyone I could speak to even on the phone.

I have spoken now to a few and met a couple face to face thought trying to start this network and hope this will expand in the future.

If nothing else I hope it will be their for women when they are fist diagnosed and that we can do some education in raising awareness amongst women – especially older women - about HIV.

6./Should HIV be treated in a GU clinic?

It is not treated in GU clinics in every part of the UK, but it is in Cornwall. If you can travel to bigger towns Plymouth, Exeter, Bristol, London you may be treated elsewhere in more appropriate surroundings and with complimentary medicine and therapies and counselling offered as routine but the clinic itself.

It is not in Cornwall. KPS does offer counselling etc but not the NHS GU Clinic!!! If you can afford to go privately you may get this but not if you can not.

I personally think this is so very inappropriate. So do most people living with HIV - Why?

  • All other sexually transmitted diseases are curable or at the least not life threatening theses days.
  • HIV is life threatening and affects your whole life and your whole body
  • HIV does not affect the genitals at all in most people
  • The only similarity to other STDs is it is transmitted often sexually


  1. Most other people with other STDs will only go to a GU clinic for a week or two – if you have HIV you will be going there for the rest of your life !!
  2. The facilities offered in a GU clinic are not suitable for people with a life threatening and lifetime illness for which they will have to be on medication for the rest of their lives
  3. I, and others with HIV, could be still sitting in that GU waiting room regularly at 80 years old – this is not appropriate.
  4. And it is medication that can often have both short and long term side effects which can also be life changing or life threatening
  5. Prescribing for people with HIV and looking after people living with HIV- both HIV meds and other medications for other conditions we can get - is a very specialised branch of medicine . It should not be done in any 'general' clinic!!

In Cornwall I would like to see something like the Mermaid centre for people with HIV

I know this is may be impossible but I can have hopes and this to aim for.

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