Criminalisation of HIV - it is personal

 Again writen for a local HIV newsletter

Criminalisation of HIV

 

Criminalisation of HIV is an issue that has been hotly debated on the internet recently, with some very polarised views expressed especially amongst those who themselves live with HIV.

Some people who live with HIV are surprisingly all for even stricter laws concerning HIV transmission and disclosure, others are fighting to review, rewrite; in view of recent research that Treatment is Prevention, or to abolish all laws specifically pertaining to HIV disclosure and transmission.

It would seem that the root of what side of the fence you stand on is possibly due to from what perspective the issue is viewed. We all that live with HIV acquired it from someone and often someone that did not tell you they were HIV+. In many cases because they themselves did not know, sometimes they did but were scared of the reaction, or rejection, or their status getting out, if they did disclose. Or some believe even without evidence, they did know but did not care or wanted to pass HIV onto another. In fact research and anecdotal evidence point to very few people living with HIV wanting to pass HIV onto another, but the issue is very emotive.

Therefore if this issue is viewed subjectively, from the point of view of a person living with HIV’s own feelings and emotions regarding acquiring HIV, many can and do believe even stricter laws regarding disclosure and transmission are neccessary. Many of us hold at least a residue of anger towards the person we acquired HIV, whether they knew that had HIV or not and feel that if the law was stricter, this would potentially be a deterrent and lead to less transmission. However the research says otherwise.

Opinion on this issue are often based, for both HIV- and HIV+,  on individuals own  experiences and their own perceptions of risk, actual or feared, than the facts on whether specific laws against transmission of HIV are effective in lessening transmission or reducing the risk.

However if the issue is looked upon from the point of view of what is best for public health in terms of HIV in general, both in the UK and worldwide, many support the lessening or abolishing such laws.

That existing or non specific laws regarding harm to anyone via any means are enough for those few cases where someone deliberately, maliciously or recklessly transmits HIV to another.

No other disease, even potentially sexually transmitted diseases, even those that are proven to be even more easily transmitted are singled out this way.

For example here are no specific laws to single out the transmission of Hepatitis C even though much transmission is sexually and it is far more infectious than HIV and can also lead to severe health problems or even death. While HCV is recently curable in some by new medications many cannot endure that cure, or are not in a medical position to try for a cure.
Genital human papillomavirus (also called HPV) is the most common sexually transmitted infection (STI) and is the cause of over 70% of cervical, uterine and vulval cancers in women and or many oral and anal cancers in both men and women is also not singled out for legislation. HIV is unique in this.

Personal Perspective

I have to admit when I first thought of writing it I intended to be complexly objective, and not mention my own position on this issue. But I find this is impossible. HIV will never again be merely an academic issue to me. As HIV is now part of my life, and always will be, so are all issues surrounding HIV.

So I will be honest in saying that while when first diagnosed I may have stood on the side of more punitive legislation in the UK for HIV transmission, after much thought and consideration, and consultation and debate with others who live with HIV, and those who campaign for awareness who are HIV+ or not, even though my long term partner passed on HIV to me, I believe that criminalization of HIV transmission is counterproductive.

That it will and does lead to less HIV people disclosing that they are HIV especially when they are with new partners

Therefore as the other partner will not be aware they will have less chance of being proactive in protecting themselves - HIV always takes two!!!!! Both parties need to have the knowledge to be able to protect themselves. This encompasses also the question of who is responsible for your own health, yourself or others, including your sexual partners?

The more HIV specific legislation there is I believe less people may want to know if they are HIV positive and hence transmission will be easier

·        It will lead to less disclosure

·        Both partners could be HIV and not disclose due to fear and this could lead to more super infections

·        It stigmatises those already living with HIV
Criminalization will increase stigma:

·        It is divisive - leading to separate sections of society - those with HIV, those who do not have HIV and those with HIV who will potentially be regarded as potential or actual criminals 

·        It blames individuals living with HIV for their own infection, yet conversely blames those living with HIV for the transmission of HIV to others - a complete 'no win' dichotomy

 

That it adds to the already existing public perception that HIV + people are somehow responsible - through risky behaviour and for their own infection and can be blamed  i.e. that the individual can be blamed and not the government strategies and response to HIV nor the lack of education on so many levels

That HIV + people are irresponsible, lead chaotic and/or anti-social lives.

Further criminalisation of HIV will lead to an even more negative attitude towards HIV+ people which is counterproductive to the health of all those living with HIV .It also may add to more mental health issues due to stigma for HIV+ people.

But it is also counterproductive to the public health of all. As it will lead to an attitude by the general public that HIV and its transmission does not concern them!! i.e. I was told this recently and often hear similar.

 'I am not leading a risky lifestyle for HIV, I do not use intravenous drugs, I do not know anyone with HIV so HIV does not concern me, so I do not need to know about it nor is there any need to protect myself or my partners from it.'

(this was said by someone who knows me. They seemed to have forgotten that I live with HIV so little has my disclosure or discussion of the issues meant anything to them!)

 So my view is: result of HIV criminalisation = more ignorance, more stigma , more HIV transmission.

Criminalization in my view is therefore divisive - creates the idea that people with HIV are somehow different from other people ( maybe 'worse' than other people) and that they are of course potential criminals!!!

The Issues re Criminalisation.

Whatever your stance on this, it is certain that this is of concern and interest to all people living with HIV, within the UK and worldwide. It is not possible in a short article to outline the full debate; all that can be done here is highlight some up some of the issues.

Part of the reason for this high level of debate recently  has been a court case that took place in the Supreme Court of Canada  that eventually ruled on October 5^th 2012 that:

‘people with low levels of HIV who use condoms during sex do not have a duty to disclose their condition to sexual partners. The court -- in a 9–0 ruling -- reasoned that the decision reflects medical advances in treating the virus that causes AIDS.’ http://www.thebody.com/content/69365/canada-court-low-hiv-dont-have-to-tell-partner.html?ic=700100]

This ruling was a direct consequence of the knowledge that recent research that has shown that ARV Treatment is Prevention. In Issue 212, summer 2012 NAM HIV treatment update, the editor Gus Cairns summed up:

‘if someone takes the treatment for it ( HIV) , they can become for all intents and purposes, non-infectious.’

In many countries there have long existed specific laws about both HIV transmission and even disclosure of HIV. In many states in the US for example it is an offence not to disclose that you are HIV positive even to a potential but not yet actual sexual partner, and there have been prosecutions.

Of course here in the UK there have never been any specific laws pertaining to HIV in terms of disclosure, exposing anyone to infection, or actual infection of someone with HIV.

In the UK existing laws such as ‘grievous or actual bodily harm’ in the case of those that are proven to be recklessly, deliberately, or maliciously attempting or actually infecting others with HIV are in UK law deemed to be sufficient.

 

All the prosecutions in England and Wales to date have been brought under Section 20 of the Offences Against the Person Act and for such a successful prosecution here in the UK HIV transmission must have taken place, the person accused must know they are HIV positive, the complainant must not have consented to any risk of transmission, there has to be scientific evidence to support the claim that the defendant infected the complainant and the defendant must not have taken reasonable steps to protect the complainant from infection during sex. This in the context of HIV transmission this mainly refers to consistent condom use.

In Scotland this is not the case. In February 2010, an HIV-positive man was convicted of 'culpable and reckless conduct' for having unprotected sex with four women, although three of the women were not infected.

Much existing research informed debate confirms that the UK approach is more effective than specific laws.
As long ago as 2008 the Open Society Institute stated:

‘Criminalizing HIV transmission is justified only when individuals purposely or maliciously transmit HIV with the intent to harm others. In these rare cases, existing criminal laws can and should be used, rather than passing HIV-specific laws.’

 They go on to say that policymakers often state that people who transmit or expose others to HIV ought to be punished because their behavior is “morally wrong” or “harmful.” Yet most people who transmit HIV do so either not knowing they have it or because they fear disclosure of their status will risk violence, discrimination, rejection by family and friends, and other abuses based on their HIV status. This does not absolve individuals from moral obligation to take steps to protect others but equally that legislation neither deters behaviour in general nor achieves justice. That Applying criminal law to HIV transmission could discourage people from getting tested and finding out their HIV status, as lack of knowledge of one’s status could be the best defence in a criminal lawsuit and promotes fear and stigma.

Many UK HIV activists are fighting to keep UK law non specific to HIV, and indeed to lower the number of those that are prosecuted in the UK for transmission under the Section 20 of the Offences Against the Person Act and to keep non disclosure off of the UK statute books as Their view is that our existing laws are sufficient and to bring in any laws that single out one, illness, virus or condition, but no other, is perpetuating the stigma and discrimination that surrounds HIV, that criminalisation of HIV is counterproductive to HIV testing, prevention, transmission and lessening stigma against HIV positive people.
Since then it has been confirmed that being on HIV medication and undetectable can vastly lower infectiousness. Of course no one is suggesting that HIV positive people should no longer use protection as blips can occur in detectable virus load and there is some evidence that HIV can exist in seminal fluid and other secretions even with those on ARV medications.

However no one can deny the recent research has altered the ball game when it comes to criminalisation of HIV as specific legislation; it has been described as a ‘serious game changer’ by Michel Sidibe, executive director of the Joint United Nations Programme on HIV/Aids (UNAIDS).
 
 However prosecutions do take place under these existing laws in the UK and many countries have laws specific to HIV.

The Global Commission on HIV and the law summarised the global the global state of play as regards the criminalisation of Human immunodeficiency virus (HIV) transmission and exposure. In their working paper ‘The Criminalisation of HIV Exposure and Transmission: A Global Review’

 

Exposure and transmission of HIV are criminalised across the globe, although there are significant differences in prosecution and conviction rates.

·        There appears to be a far greater use of criminal law in wealthy countries and regions (notably Scandinavia and North America) with relatively low HIV prevalence. There is, however, no evidence to suggest that there is a correlation between the use of criminal law and low prevalence (i.e. no evidence to indicate that the use of criminal law leads to a reduction in onward transmission).

·        There appears to have been an assumption that introducing new laws criminalising exposure and transmission can have beneficial public health outcomes. There is no evidence to support this and it is therefore inadequate and insufficient as a justification for the use of criminal law.

·        There is evidence of widespread over-criminalisation of people living with HIV – not only through the criminalisation of both sexual and non-sexual exposure and transmission, but through broad and over-inclusive fault requirements (i.e. not just intention, but recklessness and negligence).

·        There is insufficient, though in some regions increasing, recognition that undetectable viral load resulting from effective anti-retroviral treatment (ART) should be taken into account in allegations of exposure, and should, for example, defeat claims that the defendant was reckless or negligent.

·        Although it is widely accepted that phylogenetic analysis evidence cannot in and of itself prove the route, timing or source of HIV transmission in a particular case, this is not universally recognised.

·        Within regions, and in countries with local criminal jurisdictions (such as the United States (US) and Australia), there exists widespread disparity and variation in the scope, reach and deployment of criminal law, resulting in inconsistency and confusion for people living with HIV.

·        Women are disproportionately impacted by criminalisation provisions. This is not only because women may be more likely to know their HIV status (as a result of ante-natal testing) but because it may be more difficult for them to negotiate safer sex (something which also applies to younger people living with HIV).

Historically it has been found that criminalising transmission of any infection is either useless in curtailing the said infection or counterproductive.

Dr Alice Welbourn, a well known UK  social scientist, who also lives with HIV,  specialising in HIV, gender issue and women, sums her views on this from a UK historical perspective in her presentation:

 

 INTO THE FIRING LINE: Dr Alice Welbourn ICW, IPPF Satellite Session, International AIDS Conference Mexico 2008

 

‘I have met many many people like myself around the world who are living with HIV and all report, as I do, that there are extremely few people who willfully intend to transmit HIV to others around them. In most countries there is already an old law which covers this – in the UK we call it “grievous bodily harm”. Thus there is no actual need to introduce a new, HIV-specific law to address such rare events.  In relation to historical perspectives, it is clear that no public health issue has effectively been addressed through punitive legislature.

 

Look for instance at prohibition in the US, which failed to stop the use of alcohol. Look at the way in which Typhoid Mary was treated – interestingly, a woman, an immigrant, on low wages as a domestic employee. The arm of the law and the media combined effectively meant that she felt ostracised and alienated by society. Many others actually transmitted typhoid to more people than she did, but she was the one who was hounded – and their treatment of her probably exacerbated the situation. When will we start to learn from history?’

 

 

What relevance is this to people currently living with HIV?

While many are debating this issue worldwide, there are many living with HIV who do not feel it is of any relevance in their lives. But the reality is it concerns us all, especially those of us that are currently sexually active.
However even if you do not want to enter the debate it is wise to be aware of the issues even in countries like the UK where there are no specific laws,  as there is a possibility of these laws being used.

The SERO project in the US has even gone so far as to suggest that PLWHIV get their potential partners to sign, prior to sexual activity a ‘HIV DISCLOSURE ACKNOWLEDGEMENT.

 

SERO is : ‘a not-for-profit human rights organization promoting the empowerment of people with HIV, combating HIV-related stigma and advocating for sound public health and HIV prevention policies based on science and epidemiology rather than ignorance and fear.  Sero is particularly focused on ending inappropriate criminal prosecutions of people with HIV for non-disclosure of their HIV status, potential or perceived HIV exposure or HIV transmission’

SERO is of course based in the US where in many states even disclosure of your status is necessary by law to potential sexual partners.

I am not at all sure myself, living in the UK, of the viability of getting partners to sign such an agreement, or in view of the Swiss Statement and recent research stating Treatment is Protection that it is necessary. I am even worried that such directions may increase stigma.

Personally despite my stance against criminalisation of HIV I personally am not condoning at all reckless, deliberate or malicious attempts to pass HIV on to anyone and I would always use protection, or ensure my partner did, despite my current undetectable virus load and adequate CD4 count.

However I am left feeling that disclosure is up to the individual at any stage in a relationship, and it is up to BOTH parties to protect themselves not just a partner who has HIV to be totally responsible to protect any other they may have sex with.

After all, the facts as far as I am able to ascertain is that those aware they are living with HIV and on ARVs can be more at risk from picking up other STI infections, or a further exposure to HIV from someone untreated and unknowing of their status than, those who are on ARV treatment and know their status are a risk to others; therefore it is the responsibility of all sexual partners to protect themselves.


Also disclosure for some and in some circumstances can bring danger, the threat of violence, and other consequences, and indeed I have heard from many that it has. Gender based violence towards women with HIV is a problem in the UK.

The workers at Positively UK I am in touch with who answer their helpline and run support groups see all the time the correlation between GBV and HIV and at a  BHIVA conference earlier in 2012 another important study on GBV in the UK was presented by Dr. Rageshri Dhairyawan, which showed that 52% of women living with HIV accessing services at Homerton Hospital, an East London clinic, who responded to a questionnaire, had experienced Intimate Partner Violence in their lifetime. For more information on this and other related issues see ‘Speaking Up’ an online blog written by Silvia Petretti Deputy CEO at Positively UK.

Of course for many men also, to disclosure can have very adverse consequences.
Therefore, in my opinion, disclosure, should remain a personal choice in the UK and not be subject to specific legislation and criminalisation.

In terms of criminalisation of transmission and HIV in general all I have read that is of an objective and factual nature, plus talking to those of all views online and following the debate closely, It would seem that the bulk of evidence does point to Criminalisation of HIV being counterproductive for testing, prevention, stigma discrimination and public health in general.

Grass roots and larger organisations in the US, UK and elsewhere are increasingly coming out in their support to end criminalisation of HIV in their countries and worldwide,  Queerocracy, IPPF ( international Planned Parenthood Federation) International Community of Women Living with HIV/AIDs (ICW) Sero Project, Sophia Forum, Positively UK, NAM, to name only a few . The list is long and getting longer all the time.

It has to be asked why in the face of growing evidence that they are ineffective, stigmatising, even an infringement of human rights, exposes HIV+ people to danger and counterproductive, these laws persist and in some countries are becoming more punitive or existing laws used more widely?

 
References:

(*Please Note - It is probably not necessary to include all these references in a newsletter article? I have only written academic papers, essays on issues in the past or short explanations for reports when working so I have no idea what is required in terms of background reading and references in such an article.   I just included them to show I did not write the above off the top of my head, uninformed and without extensive reading and taking all I read into consideration.

Perhaps they cannot be included and it can just be said that if interested references can be obtained?)

BBC News Health. Anti-retroviral drugs 'help reduce' HIV transmission.  James Gallagher ( http://www.bbc.co.uk/news/health-13381292) 12 May 2011

Department of Health and Human Services, Centers for Disease Control and Prevention. Effect of Antiretroviral Therapy on Risk of Sexual Transmission of HIV Infection and Superinfection http://www.cdc.gov/hiv/topics/treatment/resources/factsheets/art.htm, August 31, 2009

Crown Prosecution Service (CPS). Policy for prosecuting cases involving the intentional or reckless sexual transmission of infection. Crown Prosecution Service (England and Wales), 14 March 2008.

Crown Prosecution Service (CPS). Legal guidance: intentional or reckless sexual transmission of infection. Crown Prosecution Service (England and Wales), 21 June 2010.

International Community of Women Living with HIV/AIDs (ICW) ICW Concerned Over Trend to Criminalise HIV Transmission (http://www.icw.org/node/354) 1 July, 2009

International Planner Parenthood Federation (IPPF) Criminalize hate, not HIV http://www.ippf.org/appeals/current/end-criminalization-hiv

INTO THE FIRING LINE: Dr Alice Welbourn ICW, IPPF Satellite Session, International AIDS Conference Mexico 2008 (www.icw.org/node/354)

NAM/ AIDSMAP. HIV treatment update. Issue 212, pp2, Summer 2012

NAM/ AIDSMAP. HIV & the criminal law. http://www.aidsmap.com/law

Pants Matters. Cervical Cancer Symptoms. Jeanette Preston. (http://www.pantsmatters.org.uk/awareness/cervical-cancer-symptoms/ ) 31.08.2008

Pants Matters. Immunisation against the HPV Virus. Jeanette Preston. (http://www.pantsmatters.org.uk/awareness/immunisation-against-the-hpv-virus/) 22.09.2008

Pants Matters. Vulval cancer symptoms. Jeanette Preston. http://www.pantsmatters.org.uk/awareness/vulval-cancer-symptoms/  31.08.2008

POZ. HIV Criminalization, http://www.poz.com/criminalization.shtml Updated Sept 2012.
Queerocracy - http://www.queerocracy.org/events.html

SERO Project What You Need to Know (leaflet)  HIV DISCLOSURE ACKNOWLEDGEMENT http://seroproject.com/wpcontent/uploads/2012/10/sero_brochure_colorprint-1-1.pdf  August 2012

Sophia Forum – raising the profile of positive women (http://www.sophiaforum.net ) 

Speaking Up, The diary of an HIV Activist, Silvia Petretti. (http://hivpolicyspeakup.wordpress.com/2012/06/27/is-somebody-taking-notice-of-the-links-between-gender-based-violence-and-hiv/) . June 27, 2012

The Gay Mens Health Charity. HIV transmission and the law (http://www.gmfa.org.uk/sex/hivandaids/hiv-and-the-law  )  2011 April

The Time Healthland. Early Treatment With Anti-HIV Drugs Stops Transmission Between Partners
(http://healthland.time.com/2011/05/13/early-treatment-with-anti-hiv-drugs-stops-transmission-between-partners/)  May 13, 2011

The Washington Post . HIV drugs sharply cut risk of transmission, study finds (http://www.washingtonpost.com/national/hiv-drugs-sharply-cut-risk-of-transmission-study-finds/2011/05/12/AFmFdV1G_story.html

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.

http://www.timesonline.co.uk/tol/news/uk/health/article1942916.ece

http://www.info.doh.gov.uk/doh/embroadcast.nsf/vwDiscussionAll/2F122A9968698C168025730000592AC5

http://www.bbc.co.uk/radio4/womanshour/02/2007_11_wed.shtml

http://news.bbc.co.uk/1/hi/health/3964263.stm

http://www.cancer.gov/clinicaltrials/results/cervical-cancer-vaccine1102

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

Further:

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.