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

I wrote this recently for a local charity HIV newsletter. No idea if it wil be published there so I thought I may as well publish it here. If I have got anything wrong, please do not hesitate to let me know?

A Functional Cure for HIV - is this now a possibility? My view.

When I was diagnosed about 5 years ago the possibility of any type of  cure for HIV seemed so remote, that as far as I was concerned at 54 it was not something I could not afford to spend time waiting for;  I had and still do have a life to live.
However, while I still think if it comes it may well be too late for me there have since been some developments recently that make it a possibility, if not for me at my age of nearly 60, at least for some currently living with HIV and those in the future.

The Berlin Patient
The renewed hope that this could be a possibility began with  the ‘cure’ of Timothy Ray Brown, http://timothyrbrown.com/  know as ‘the Berlin Patient’

Timothy is an American man in his mid 40s who was living with HIV but who also developed leukaemia. Due to this he needed and was given a full bone marrow transplant in Berlin in 2007, for leukaemia, not HIV.

However the specialist, Dr. Huetter, who treated him decided to search for a bone marrow donor who carried the CCR5 receptor mutation. In laypersons terms this is a genetic mutation only present in about 1% of people and then only in Caucasians that means that these people do not carry the CCR5 receptor which allows the HIV virus to attach to the T-cell and subsequently infect the cell.

Thus People without CCR5 appeared resistant to HIV infections, often known as slow or non progressors. However as this is not the only mechanism by which HIV infects and replicates, having this mutation does not in all prevent HIV infection in all, but in most it enables the person to control it without medications, or in the case of slow progressors to control it for many years.

Timothy was given a transplant with donor cells from someone with this mutation, sadly the first time it did not work to cure his leukaemia, so he had to undergo the whole process again in February 2008.

This time it worked, but it also seemed to cure him of HIV! Five years later he has no leukaemia but also has not had to go back on HIV medications, and while some research, but not all, has shown he may have fragments of HIV genetic material in his body, he has no functioning HIV. This is remarkable and true and Timothy remains free of replicating HIV and no longer has to take HIV medications.

 I have it partly from the horse’s mouth as I ‘talk’ to Timothy over the internet as we both belong to several HIV discussion and support groups online. But I will not pretend to know him well, just that I have talked to him and know thse who have met him in person.

What is a functional cure for HIV?

This not a full ‘cure’ where HIV is fully eradicated from the body and many leading medical scientists do not think this is possible once infected. However if a person who lives with HIV can stop medications, there is a minimal amount of HIV remaining deep in their body,  but it is undetectable in blood tests and  it does not cause illness and it cannot be transmitted to anyone else, then this is a functional cure.

Timothy’s experience was truly a milestone in HIV research and inspired or re-fired the search for a cure as it pointed to a way it may be possible. It may be thought that:

‘ scientists and drug companies have always been on an all-out hunt for a cure for Aids. Not so. The virus is so elusive and smart that for decades now, experts have hardly dared dream of eliminating it. Most of the effort has gone instead into treatment which keeps it under control in the body and vaccines to stop it getting a hold in the first place. ‘

 

http://www.guardian.co.uk/society/sarah-boseley-global-health/2012/jul/19/hiv-infection-infectiousdiseases

 

But scientists due to this breakthrough decided the time had now come to research and cure as the best way of ending HIV as an epidemic. As vaccines are still in their infancy and the cost, both financial and in terms of logistics, of treating everyone, worldwide is proving too high.

 

Scientists from the International Aids Society, including Françoise Barré-Sinoussi, the Nobel prize laureate who was the co-discoverer of the human immunodeficiency virus (HIV) is one of the prime movers in this search for a functional cure.

This search has gained further momentum since two more men who had bone marrow transplants no longer have detectable HIV in their blood cells.
 The remarkable thing is that these patients DID NOT have donors that carried the CCR5 receptor mutation!
It was expected that HIV would temporarily not be found in their plasma, but the surprise is it is not to be found, approximately two years on, in their cells either?

The key factor in their treatment seems to be is these patients, unlike Timothy Ray Brown,  did not stop their HIV medications while undergoing the transplants.

‘It suggests that under the cover of anti-retroviral therapy, the cells that repopulated the patient’s immune system appear to be protected from becoming re-infected with HIV.”

These findings were presented to the 2012 AIDs conference in Washington DC.

What direction is research towards a functional cure currently going?

Obviously the drastic measure of a full bone marrow transplant is not feasible for all or even for a fraction of those that now live with HIV.
Many do not survive bone marrow transplant which is a very gruelling and invasive procedure.

 One that only a few are healthy enough to undertake, of course very expensive, is beyond the medical capabilities of health care in some countries and will only be done anyway if a person has other reasons such as Leukaemia to undertake this. http://www.uptodate.com/contents/bone-marrow-transplantation-stem-cell-transplantation-beyond-the-basics

A bone marrow transplant also can have lifelong consequences in itself.

Having spoken to Timothy Ray Brown briefly over the internet and those who have met and know him personally I am very much aware that his having undergone this procedure, and twice, has affected his health and quality of life, in ways unrelated to HIV. He may be cured of HIV and Leukaemia but he will always have the physical and emotions scars of his experiences.

But due to the knowledge gained by what he went through and these remarkable discoveries scientists now feel there is a possibility of using far less costly and invasive gene therapy and/or stem cell transplants to alter HIV patients immune systems to free them of HIV to the extent that they no longer need to take medications to control it.

It is in this direction that current research into a functional cure for HIV is now concentrating upon.
This work is in its very early stages but scientists at the Fred Hutchinson Cancer Research Center are trying to perform stem cell transplants with cells that have been genetically modified to be resistant to HIV, much like the cells that the Berlin patient received.

Another earlier and interesting development in France that some scientists think can be linked in with this stem cell research and combined somehow together is that a small group of patients were able to stop taking HIV medications without resurgence of the virus in their bodies.

These patients were given antiretroviral drugs very soon after becoming infected with HIV and not after their CDF4 cells dropped below 350 which is the more usual management of HIV. They remained on ARVs for three years and stopped without any rise in the levels of HIV in their bodies. They have all remained well with very low levels of HIV for an average of 7 years. This is also further evidence that a functional cure can be achieved.
Yet another strand to this new research towards a cure is a study by David Margolis and colleagues at the University of Carolina, published in Nature, appears to show that it is possible to reach the low levels of virus that "hide" in cells and have never been susceptible to treatment, using a dose of a drug that inhibits an enzyme involved in "silencing" HIV.

It is hoped that combining this research, flushing out dormant HIV virus lying in wait in the brain and spinal cord despite ARV treatment, early but temporary treatment with ARVs and combining with minimally invasive stem cell transplants; with more research, a functional cure for HIV could now be within reach?

What does this mean for us?

I am not of course medically trained and so all I can do is outline in laypersons terms what I have learned about the direction of this research from talking to those I know on the internet and following the developments and research as well as I am able. If I do not get this completely ‘right; anyone reading this is free to research this themselves and may have more medical/scientific knowledge than me and be able to understand it better.

However what is very apparent to me, is after a period of hiatus, whereby research for a cure of any kind for HIV had been all but abandoned in favour of possible vaccines, PeP Post Exposure Prophylaxis) and increasingly more effective HIV medications, a new energy, resources and of course funding is now being put into this area of HIV research; the search for a functional cure.

I am still not ‘holding my breath’ that a cure will come within my lifetime, or while I am still healthy enough to undergo it, as all of this research is in very early days. However I am more hopeful now that those who are younger than me and those who come after me may have a chance of at least a functional cure and HIV will one day become as many other STIs that were in the past incurable and in fact devastating to many communities.

Such as Syphilis, once a lifetime condition and killed many of those that had it after much suffering but is now thankfully curable and therefore few who contract it even bother to talk about it and certainly there are few support groups or, need for support or even any real fear or concern amongst those who pick it up? http://en.wikipedia.org/wiki/History_of_syphilis


It is therefore my hope that HIV will one day become as now is Syphilis and some other STIs now are. A STI to be avoided at all costs but if tested and diagnosed swiftly, a permanent, if only function cure, can be achieved for the majority before any real physical harm is caused. And due to this HIV will no longer be of the epidemic proportions it currently is worldwide and cause such devastation to individuals, communities and whole countries.

Timothy Ray Brown recently launched the ‘Timothy Brown Foundation’ to raise funds for HIV cure.

Veritee Reed Hall
October 2012

Timothy Ray Brown

Hi to all- from Hi V

Hi to all

It been a long time since I posted anything here!

All I can say is life goes on, and I have a life that is not always concerned with HIV

But recently I have become aware of the irony that due to my name - Veritee -  and nickname  - Vee or V -

So that many I talk to on social networking address me as Hi V?

I find this ironic, but also OK and fitting
What to you think?

V

Criminalisation of HIV & the SERO Project

Here are two  U.S. organisations that can sometimes offer legal help and can certainly offer advice and support for those facing prosecution for HIV transmission and/or failure to disclose a HIV+ status.
If anyone has any further links to resourses on this, especially in the UK, please post them below as a comment
http://seroproject.com/
http://hivlawandpolicy.org/resources/view/563

( Thank you to Laurel Sprague for these links)


I realise there are some, or even many , both HIV positive and HIV negative who will not like the campaigns to de- criminalise HIV. And not understand why I post so much about supporting them.

Often because they acquired HIV from someone, often a long term partner or even a spouse, who had HIV, infected them without giving them the chance to have the knowledge to know they had to protect themselves, or know others for whom this was the case.

I understand this

My husband of over 20+ years passed HIV to me. No he did not know he had HIV, but he did know he had been unfaithful and had not fully protected himself and come home to me and not had a test and had sex with me without any attempt to protect me ( just in case)  and I did not know to have a test or  have a test, not that time anyway, I had in the past.

I had not been tested for HIV and all STIs regularly for many years  because he had ever said he was unfaithful, but I was tested regularly - just in case - up until my menopause. I don't know why hitting the menopause meant I stopped feeling it necessary to get tested, I think maybe I saw it psychologically as marking us getting older and ageing together and if he had not been unfaithful up to then I simply thought it would never happen now. And I had always been faithful and knew I always would be.

But menopause held another factor in why I acquired HIV. Because I had long only used barrier contraception as I no longer wanted to take hormones or have anything inserted in my body. However when I reached menopause I no longer saw any need for condoms.

Although he did not know he had acquired HIV, it could be argued that he did not he had put himself at risk and hence me and had not informed me of that risk. And some even in these circumstances have tried to get a prosecution and indeed I was urged by some to try to prosecute my husband. Many saying to me he knew he had taken the risk and I did not and how could I be sure he had not lied to me about being HIV poz, as he was a seaman he could have been tested abroad and if he had lied about being unfaithful he could have lied about knowing he had HIV and even if he had not with a good lawyer I could perhaps have argued he knew he had taken a risk .

Very early on in our diagnosis I thought deeply about this and the suggestion I should try to prosecute my husband and met a few through my local charity, and on line, who were trying or had tried to prosecute their partners in similar circumstances.

But I decided, and of my own back as at that point I had never read any of the information re criminalisation of HIV, NOT to do this.

After careful consideration and apart from my own circumstances, the feelings of anger and betrayal and deep sadness I had at first,   I found my view were that  criminalisation of HIV is counterproductive to eliminating stigma, prevention and testing and prevention and stigma, testing is what I am most concerned about, right from the first day of my diagnosis.

And of course I love and know my husband well and as I have stayed with him, know why he did not tell me about the risk he had taken, and how and why  he felt he had no option but to not tell me, and I have known and shared the pain he has gone through that he passed HIV to me, whether he had any idea he had it or not, he has suffered .

And don't forget he has HIV too, about 4 years ago he was days from death with HIV caused PCP and other infections, he now has Prostrate cancer. He is suffering, he is not a criminal.
Nor are any of us who live with HIV

But even if I had not and even if he had known, I quickly realised that there are many, and very complicated, reasons for everyone HIV+ why someone may not disclose and a huge part of those reasons are much to do with the stigma discrimination and fear of criminalisation that all with HIV live with and that surround HIV. These are not all the reasons, but many of the reasons actually have their base in those areas.

So I decided criminalising anyone with HIV is ultimately criminalisation ANYONE of us that has the HIV virus

And that it will not help us - except on a very person level of revenge and perhaps closure for what specifically happened to us.

But on a wider level it will achieve nothing except further stigma, further infections and less testing.

Yes perhaps there is a case for prosecuting those very few that knowingly, deliberately or recklessly take risks that may lead to another acquiring HIV, and that intent, or sheer recklessness can be proved beyond doubt. There is evil in every group and some may deserve to be prosecuted? but I am not sure words like deserve, or even blame is helpful to be used in general when it comes to HIV.

But if the law in any country allows for that then it must be very clear and defined as to when a viable prosecution can be made, and perhaps like in the UK it not be under a specific law for HIV transmission and disclosure, but under laws that apply to anyone that deliberately or recklessly harms or hurts another. But even this could be counter productive.

It is about the well being of the whole, the majority, not the individual or individuals personal situations I believe we have to consider here.

Because I just do not believe the majority of people that live with HIV, even those who infect their partners knowing they have or they may have HIV, are evil, cruel or even always thoughtless people.

I simply do not believe that there are many at all who want to be responsible for passing on to anyone a potentially life threatening and life changing virus. And I certainly do not feel that those that have sex but do not pass it on, use protection, or are sure that their infection is under control i.e on treatment and undetectable yet do not disclose are evil or even criminal either.

I think like all with HIV they, like us all, are victims of the huge stigma that surrounds this virus.

All who live with HIV, however well they cope are caught up in huge and often scary, social, emotional and personal, pressure or even peer group pressure and in some cases – many woman HIV+ all over the world have faced this and men too – a fear of or actual violence towards them should they disclose or ostracisation from their communities, families, society, fear of how their life will change if it gets known they have HIV, their jobs, income, accommodation, access to their children..... the list is very long of the reasons why someone many not disclose their HIV+ status or indeed actually have unprotected sex even with a very loved one and perhaps pass HIV to them, them is very long and complicated.

And it has to be remembered that the incidence of mental health issues, depression, etc of those that live with HIV are FAR higher than the average population.

This is not that those who randomly acquire this virus are necessarily more prone to mental health issues. It is a reflection of the often constant and terrible stress, conflicts and mental strain that living with HIV involves for many people. Much of theses stresses have roots in stigma, and fear and of course living with a potentially life threatening illness. Even now, even since the newer ARV drugs, people still die

    A stigma that does not surround, any more at least,  many other illness, pathogens, conditions, and should not HIV. And criminalising all of us who have HIV will not lessen this, for individuals or us all, it will only increase it.

Yesterday I spent the day with some people who have Hep C, which may - and I did think this -  be thought to be the same in terms of disclosure and carry the same stigma. But while some cant disclose most have no problem with saying they live with Hep C, and one who is co-infected said they can and do tell anyone about having Hep C, but they can not be open about HIV.

Hep C is not criminalised. I think this is part of the explanation of the difference for many of those living with Hep C. Just like HPV , another potentially fatal virus that is sexually transmitted it is not criminalised or stigmatised in general.
HIV carried great stigma and criminalisation is counter productive to treatment, prevention, testing........just about everything regarding HIV.

I am not alone in believing this.
Much social research has been done that point to this being the case.

Also I know, online and have met many personally, who were infected by their partners and some knowing they had the virus, that may have wanted to prosecute and were very angry, wanted revenge, retribution, personal closure and wanted to do it via the law, and thought to prosecute was a way of ensuring that it did not happen to others or it happened less, that now support this campaign to de-criminalise HIV, all over the world.

I don’t ask that anyone agrees with me. And I understand all too well the personal anger and feeling that you want them to suffer or you want your day in court. For it to be publicly proved by law that you were a victim when you were infected or felt you were at risk of being infected by lack of disclosure by your partner for whatever reason, To be exonerated of all blame that society puts on you for your own infection and by the use of law. And of course many other reasons why you may want your day in court.

Just believe me I was very angry with my husband and felt all these things.

But it is my view that NONE of us should be victims of blame for having this virus, which it is a virus, not a thinking entity and by criminalisation and blame it perpetuates stigma and thus perpetuates the virus being able to thrive and be passed on. As the virus is more likely to be passed on to others in a atmosphere of stigma, fear and blame.

I won’t go on further
I don’t expect anyone to agree with me.
All I am asking is to try to put your own personal circumstances aside, leave your own pain and hurt for a while and read the many arguments for and against criminalisation of HIV.

And decide what is best for everyone, the whole population of the world that are HIV+ or potentially could become HIV+.

Letter to my HIV Virus

Dear Vee's HIV

I want to make it clear to you and all others that my virus for sure will die with me.
I will never pass you on to anyone else.
But until I die I live in a symbiotic relationship with you my virus in that you can't live without me, but I cannot shift you from my body.

So even though I am on meds that keeps you, for now,  under control, stops you getting the upper hand and overwhelming my body, I can not ultimately get rid of you except ......by my death.

As long as I live you live too.
When I die you die too.

And while I intend to live my life to the full and as long as possible ...........

On my death believe me I will, be while dying, celebrating the death of you the virus that has made me its home.

Very Sincerely

Veritee

To My Wonderful Mother

No mum I can not sing!!!!!
I try and I love it, but I am not very good at it!

You could in fact sing , and paint and do so may things and so well.
Far better than I ever could.?
But ...... sadly like me you were a product of your age and how it affected us as women _ at any given era .............crap wasnt it my mum?? So very , so very, very sorry.

I am NOT, nor were you in any way, a Christian
No, you were out on your own in having your own beliefs in an era when that was not acceptable.
It still is not acceptable really ....is it??? ..sadly it is not ..............so to my lovely and so  very brave mum that went before me.

To you all ...... all children and their mothers everywhere.

Lest we forget and we do........... don't we ? We do all at times forget, who rode the boards for us, who went that extra mile, stood out for.............. their children and for what they believed??
We are all forgotten in the end.

This song I love. It is an old and very  beautiful folk song and please my mum ignore the christian references. As it is not just about this.......or at all about this for me .............. but how we felt at your funeral!!!



I just hope where ever you are you are mum ......or if you are nowhere????? .....you are somewhere you can not be ever hurt, or are nowhere so you can NEVER , EVER be hurt anymore ......I know you were so hurt by life but as your child I could not help
Bye to my mother - love you so much

BYE!

So I hope that my mother you are now at peace and you do know that I do so love you?

Lyrics to May the circle be unbroken :
To my Mother Phyllis Reed

I was standing by my window
On a cold and cloudy day
When I saw the hearse come rollin'
For to take my mother away.

May the circle be unbroken
By and by lord, by and by,
There's a better home a-waitin'
In the sky lord, in the sky.

I told the undertaker:
"undertaker, please drive slow,
Cause that lady that you're haulin'
Lord, I hate to see her go".

May the circle be unbroken
By and by lord, by and by,
There's a better home a-waitin'
In the sky lord, in the sky.

Well I followed close behind her,
Tried to hold my head and be brave,
But I could not hold my sorrow
When they laid her in the grave

May the circle be unbroken
By and by lord, by and by,
There's a better home a-waitin'
In the sky lord, in the sky.

I was standing by my window
On a cold and cloudy day
When I saw the hearse come rollin'
For to take my mother away.

May the circle be unbroken
By and by lord, by and by,
There's a better home a-waitin'
In the sky lord, in the sky.

I told the undertaker:
"undertaker, please drive slow,
Cause that lady that you're haulin'
Lord, I hate to see her go".

May the circle be unbroken
By and by lord, by and by,
There's a better home a-waitin'
In the sky lord, in the sky.

Well I followed close behind her,
Tried to hold my head and be brave,
But I could not hold my sorrow
When they laid her in the grave

May the circle be unbroken
By and by lord, by and by,
There's a better home a-waitin'
In the sky lord, in the sky.

It may seem like a load of rubbish , but actually every bit if the day of your funeral this song reflects in some way.
If all that is 'a-waiting' is peace for you and total nothing that is great as you are out of any pain

Love you my mum, you were the total and utterly the  greatest!

Is honesty and Truth Always the best Policy?

I am now thinking I should close or stop using my blog again.

And maybe some on line groups?
My mother named me Veritee, which means truth and it was very apt. As I have always have found it difficult to be anything other than very strictly truthful. And I am afraid this has in the past , all my life, upset others.
As I often tell the exact literal truth.

 For instance as a very shallow example

I will say 'yes your bum does look big in that!' Or call a shovel a shovel.  When others would have thought it but censored what they say .

And  also will tell it how I see it unbidden and then regret it hugely, especially if the person is hurt , as that was not what I wanted to do.

I was just telling it how it is for me.
I have learnt to censor myself a little as I get older in person, but NOT in my writing!

So I stopped using this blog much about 18 months 2 years ago because as I know that when I get riled/pumped up  about something I use my blog to off load about 'exactly' how I feel and that to me there is no point at all in having a blog if I cannot do that?

But I upset some people and organisations by doing this and I need their support.

And among others KPS got upset in the past about some of the things I said on this blog, and I have blogged again about them recently and I fear they will not be pleased!

At the time, not now, but when I last 'got into trouble' with them. What I said  was not directly about the charity KPS, I did write a bit about them but the main entry in question was my being critical or rather very upset of how I was treated by one of the consultants at the GU clinic when I was first diagnosed.

As on the first time I went to the clinic after I had had my results, having been told over the phone,  and Barry had been in hospital and was still in hospital so I had not been able to talk to him at all,  but was allowed out of the ward to be with me and I said to him  in front of the consultant that he should have
'kept it in his fucking pants!'

And the consultant said I was abusing my husband? and showed me no compassion at all for what I was going through and what a shock it had been to find out you had HIV at 55, when you had never had sex with anyone but your husband since you met in the early 80s and your husband now being hospitalised, very ill with AIDS.

And KPS trustees were worried of how critical I was about this and the GU clinic at the time in and expressed this in a blog entry, because Kernow Positive Support has to work very closely with the GU clinic at the Royal Cornwall Hospital and relies on their support, apparently KPS would not have got off the ground without this support and they are very careful not to rock the boat with the consultants and doctors there.

But I did not know this.

I was just a person struggling with my fairly new diagnosis and I had gone to KPS for support and one of the issues I needed support about was how I had found at that point the GU clinic less than supportive, empathic understanding of what I was going through and I had NO IDEA it was not possible to run a charity to support people with HIV in this country without 'keeping in' with the local GU clinic!!!

And I also had no idea how or what I said on my own blog as just in individual not working for that or any charity would affect in any way KPS  anyway ( or to the newspapers as I did go in a newspaper , I did not criticise the GU in that but did say I had not felt had yet had much support from them or any one or any organisation)

But apparently it does and KPS was 'concerned' about this and a few other things I wrote when I was last very actively using my blog.

 And in fact they were very concerned simply about  how open I was, and still am, in person and on my blog, about being HIV positive and kept warning me not to be and I just did not get how it was any of their business how open I was?

I think in part , in retrospect, they were concerned about me and that I would get attacked by the general public or stigmatised more or abused or whatever and they also did say they were concerned I woud not have support form others HIV+ in the area if I continued to be so public and to say what I feel.

But quite frankly 4 years on and that has not happened greatly. In fact the most of the criticism I have had has been from some trustees at this charity and ironically to me, a few people that are also HIV+ in the area??


So they were right about that, that I may also get stick from other HIV+ people as indeed I have.

I did not at that point understand how or why I would. Surely it was my business and my business alone if I wanted to be open about being HIV positive

But I did not realise then how scared others with HIV in the area might be of a person like me who was open - which proved to be true that some were and I am a LOT more subtle now about what I say in person.

Not for myself but out of respect for others with it because many were and are still are hiding their HIV positive status, at times even from their family.

 And some who use KPS had expressed that I 'worried' them as in revealing my status I may accidentally reveal theirs, which of course I would not do and never have! Or that they would be 'outed' by association with me?

Which made no sense to me as I have many negative friends and acquaintances so how would anyone know if a HIV person was out and about with me that they were HIV+ too!!


But in the early days of my blog and being open in public generally and because by then I was partially 'associated ' with KPS as I had tried to start a positive women's group with their help, I was called into the office by one of the trustees and a worker and basically given a lecture of how I much be more 'careful ' about what I say, on my blog and in person?

They even were concerned about something I had said in Facebook they had read! Where I said something like ;

' there are women with HIV everywhere, even older women like me, even in a rural place like Cornwall, The oldest I know personally here is 62.'

I did not name that women and there are other, in fact,  older women than her in Cornwall with HIV, and some on my Facebook.

And  out of the thousands of older women in Cornwall she could not be identified by that as being 'the one' with HIV!!
But KPS was worried that I had by this disclosed this persons status!! And in fact she deleted me from her Facebook and complained about me to KPS! even though no one would know it was her.  As a women in my 50s I know loads of negative over 50 women on Facebook! She does not even say she lives in Cornwall, so no way was I disclosing her status!

But it was a lesson learnt. That some women with HIV in Cornwall are so fearful  of their status being disclosed, that they are scared of me and associating with me because I am open and I can not even mention that anyone around their age or or their gender has HIV in Cornwlal , in case it is guessed I am talking about them?

And to a degree I do get it. It is not easy anywhere to be a women who is HIV+ and probably harder if older and even harder if you are single?

I know I am protected from direct abuse and some of the things that could potentially happen to me as a women with HIV, a highly stigmatised virus, by the fact I live with Barry - married to him - and we are usually together. And I am not seen as any kind of sexual threat i.e that I will potentialy spread my horrible and deadly virus !!!

I was naive, it was early days for me, and did not realise at first that that is how women, especially  single women with HIV can be seen, of any age.
So I do now get their fear and have tired to be very careful about what I say in person.



I was also so scared that KPS would not let me try to continue to start this woman's group with their help  and I realised by then that without their help I simply could not do it as I had no direct way of contacting positive women in the area without them.

As most , if not all are quite secret about their status, so there is no way of me finding out who they are or getting their contact details without KPS's help  and many would not want me directly to have their contact details.

I have thankfully met maybe 2 since,  who do not generally 'put it out there' that they have HIV but are not scared of being associated with me and would not mind my having their contact details However most still don't want to be seen with me or associate with me an open poz women in public and do not want me to know where they live or have their number etc.

So at that meeting about 2 years ago I promised I would be more 'careful ' about what I say in future. Barry came with me so he witnesed what was asked of me and why and I really have tried to do it for the last 18 months or so  i.e keep my big mouth buttoned.
I knew I could do this in person and I have, very much tried. but I have never been able to be 'non contravesal' or refrain from saying what I really think in writing and as all contact on the web is done in writing and my blog is written.

So I simply stopped using it!

And for a while did not even use online groups as much as I had, and did not go in the media for a while.
Then I realised that this was not really achieving anything for me that I needed., I had no more support than I had had before, probably less, and I could not express myself .

So I started to go back on groups on line and then on Worlds AIDS Day I was asked to do on ITV This Morning and talk about HIV. I was reluctant at first but they said they could not find anyone else - hard to believe, but this may be true as they wanted and older heterosexual women. And they contacted me only the day before and I had to get on a plane that afternoon and it was the day of the transport strike - so maybe they could not find anyone else??

So I broke my ban on being in the media and did the show.
Then recently I decided I can not live feeling my mouth is tied.

That it's my blog and it is up to me what I write in it and why should I be scared to write on it.
And  if what I want to say is about KPS why can I not say it? I am NOT an employee and while I had great hopes of being able to work with them on awareness and discussions in school that has never happened as I have 'blotted my copy  book ' by being too open and speaking my mind right form the start and they will never trust me.

And I refuse to be scared and if I say something critical of them or any other organisation I will lose the only support I have.

However I am now having second thoughts - I will lose my support if I do not watch my mouth or rather my typing.
I also recently said something on a Poz womens group online discussion  that did not go down well.

Sadly for me this is a group that I so value and that being able to meet up for as while, when they had funding for face to face meetings with those lovely out and strong women, did change how I deal with being HIV positive, my attitude towards myself and I value their support  -

What I said it  was actually about me and how I perceived something that had happened, not about anyone else. But I named the women it happened with.

This was really not said to not to upset her, although it did and some may say you can say what happened and not name people?

But actually while I will respect usually that others want it like that and think it is best not to name anyone, you know I really do not see it like this, not in closed groups.

This incident happened, it was about how I perceived it, it was not about her and was to explain why I hardly use even their private closed group any more despite how much I respect their organisation.

And had I said - this (unnamed) facilitator after a group  had said this thing and it hurt and it is an example of how I react and how other perceive me, and that unless I have a chance to talk it through with them, and we have not met since , it can affect me for years

And if I had NOT named her she would have knew I meant her and to talk about something another said to me without naming them when most - including the person it was about -  would have guessed..........................

I feel is disrespectful . If you are going to say it you have to say who it is.

That is in a small closed group where we all know each other and it is possible to guess easilly who I mean.
But I guess I just think differently from other people. Maybe I have never learnt the implicity  RULES of social interaction, or have my own?

This could be so as I was a feral kid with no guidence and had to learn the rules for myself and I guess I often get them very wrong!


But I know I think differently from a lot of people and that probably I should not have said it at all
I have not named her or the group here as people who read this blog are not part of the group and it is not relavant to what I am saying.

Naming KPS on my blogs about their funding, I feel is appropriate.  As anyway I am sure as there is only one HIV support Charity in Cornwall that got a lottery grant and almost anyone would know what one I meant, it would be silly, and disrespectful in my view, to call them , 'an unnamed Cornish HIV Charity'?

But I agree at times I have a problem, with all of this. i.e boundaries.

That  in writing I find it very hard to censor myself and in fact do not want to as often it is my only release of how I feel I have.
But I know what I write is really not about anyone else but about me and I do not wish to hurt and sorry when I do.
But thi,  it is my blog , not theirs.

But when I am sounding off like this I can sound very critical when I get upset about something and upset otters or organisations and this is actually not my intention.

I think I am just being REAL about what I feel and my opinions and I have a right to be especially on my own blog?

Sadly others do not see it this way.

And so I am now very worried about what I said about KPS and their lottery grant

As I know that if they read it, they will read it as if I am against The Trebullon Respite Center and any funding for it .
And as this is very close to one of the trustees heart, he at least will read it as a criticism and may be VERY !! angry .
I am not at all  - and it was not intended like this.


 I support any services for those HIV+

But I don't want Trebullon Respie Center to be funded at the expense of other services for those of us that live too far to use it regularly or at all.

And I do not want all KPS services to be centralised at Trebullon , which has always been my fear,
 As effectively that will mean I - and quite a few others -  can't access those services in any real way.

And it would have been nice to have been consulted,more at least told ?

As when the radio rang me a couple of weeks ago for me to comment on this grant I had to say I had absolutely no idea at all about it.!! They assumed that as a HIV+person in the area I would know everything about it and sounded disbelieving when it seemed I did not?

And I did not even know it was KPS that had been awarded that money, or some other charity I'd never heard of?
The radio presenter did not know the name of the charity either, I asked and he said he did not know, just a Cornish charity
And the presenter expected me to know and got his facts wrong as told me the money was to create jobs for people with HIV? So I assumed it was some sort of job providing charity, not KPS

So I just said I could not comment as I know nothing about it and a charity to create jobs for those with HIV probably would not be of use to me personally as I am 59, have other disabilities as well as HIV and doubt I will ever be on the open job market again.
It made me feel stupid and embarrished not to know - not to have been told

But I am wondering if I should pull my blog entries about this?
If I don't remove my blog posts and anyone at KPS read it  I will probably be blown out by KPS anyway
And that leaves me nowhere to go if in the future things change and I become ill or Barry does and we need their help.

 But I  get the feeling I am blown out anyway in terms of doing any real work with them, or even being included in any support other maybe than the woman's group?

My outspokenness never gelled with some of the workers, many who use KPS and the older trustees anyway and I have been warned before.


Hard to know what to do??
Censor myself on the off chance that one day I will get support and be included , when I never have been anyway?

Not by KPS and not really by any other HIV charity nor many others with HIV locally

Or speak my mind on my own blog and online ? - Difficult