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

HIV and the over 50s in the UK

The Vienna AIDS Conference, currently happening now - which I so wish I could have attended but could not - has led to more awareness of HIV in the older generation and in the UK. I do not have time right now to re-write it for this blog so I have just reproduced my comments I sent to national UK media on this

__________________________________________________________________

Both my husband and I, now 58 and 57 are one of theses statistics as we now live with HIV, we have known for approximately 2.5 to 3 years.

Since my diagnosis I have tired my best as just one individual to raise awareness of the rising rate of HIV in older people and the risks of HIV for those over 50 specifically.

And to draw attention to the fact that HIV has not gone away and new diagnosies are happening every day and amonst all, gay or straight, women and men and in all countries in the world, including the UK.!

To that aim I have since my diagnosis  been in a national newspaper - the People, and a few magazines and on local radio and on Embarrassing Bodies ( channel 4) .

I am sure most who saw me on any of those thought that I was somehow an attention seeker who just wanted to be on the media?

Nothing could be further from the truth.

We have lived for 25 years a VERY quiet life in a smallholding in Cornwall, and that is how we want to live. If it was not for HIV we would never have been known to anyone.

But when I was diagnosed HIV I found it was like joining a secret club. That so many in the UK, and even in Cornwall young and over 40+ have HIV, and the media seems to have let HIV drop through their radar and of no interest,  as if it is only something that is happening in Africa etc!!

Anyway, as to our story.

We did not think we were at risk? And I certainly did not!

Why would I? As I have been married to my husband for 20+ years and faithful to one man, my husband, for over 30 years.

But sadly my husband made a brief - very brief - 'mistake' with a woman when he was approx 50 years old about 8 years ago, acquired HIV and unknown to me, gave it to me.

He sadly had progressed to AIDs before he was diagnosed ( and I already had symptoms and was also near/verging on AIDs) as he never thought one incident in over 25 years of marriage and 30 years of being with me, one person, would lead to HIV.

So he never told me he was unfaithful - out of shame and guilt, and the hope that he could forget his one transgression, not because his aim was he wanted to deceive me, but out of shame hat he had ever done this.

So while it is no excuse that I also did not protect myself as I should have been more aware - as should we all!!

As I had reached the menopause I had long stopped using contraception and while I was/and am  very aware of STIs having worked as a Youth worker with one of my roles sexual and sexual health awareness with young people, I simply did not think I needed to use protection with my husband.

Therefore I, like many women of all ages, I did not have the information to know to protect myself so now at 57 I find I am also HIV positive.

HIV may now be controllable with medication, medication which we are both on, but this does not make it any easier at all.

The medication does have side effects. For me life changing side effects for my husband less but still interferes with his quality of life.

And as infection starting when you are over 50 is a comparatively new thing no one really knows what the prognosis is in the long term for the over 50s. When you are over 50 your immune system is not as good as it is when you are younger, also the Antiretrovaral medications are highly toxic and known to damage liver, heart and kidneys and if you have lived till your 50s theses organs have taken a battering even if you are not a drinker etc - and we are not - and ARVs only delay at best the onset of AIDs and al on ARVs or with HIV are 70% more prone to many cancers than the general population so for us it is a life sentence and a waiting game. We want to survive until our young 21 year old daughter is at least 30, to see her set up, that is our only ambition now.

And HIV is STILL a highly stigmatized illness - I can not share what I am going thorough with other women my age in the same way I may have if I had another illness breast or cervical cancer for instance and this isolates me and makes me feel so very alone.

And for no one is living with HIV something anyone would ever want.

Nor is living and coping with a stigmatized illness such as HIV how we would wish to lead the short years of active life we all  have left when in our 50s.

My message to the over 50s or even the over 45s is:

Don't join us?

Be careful, use protection whoever your sexual partner is. And if you have reason to feel you have ever taken a risk at all.........................

Get TESTED!

If you are 45, 50, or even 80, get tested

As HIV can be treated and controlled and you do not want to get to the stage of AIDs like my husband and I before you get that treatment.

How Time Flys - My Valentine

Tomorrow will be the third Valentines day we have shared since we have known we were HIV!

Of course having been married for over 23 years and known each other for about 30 years we have shared many other Valentines and probably several others when we had HIV but did not know it as we have probably now had HIV for approximately  but since the HIV diagnosis Valentines day has taken on a special significance for us .

As by co-incidence Valentines day 3 years ago was the day Barry started HIV meds for the first time and he had only been back home from hospital  and out of danger from dying of PCP for a short time.

So for me Valentines Day will always now mark the first day us both becoming full members of the 'living with HIV' club.

This sounds depressing, but today I feel slightly better and able to take a different perspective.

As it also marks us ( knowingly) surviving with HIV for over 2  years, as their was a time in the beginning  and there was a time in the beginning when I really feared that one or the other of us would not survive as Barry was so ill and I too was unwell. But more importantly it marks that we have survived as a couple , that our relationship has survived and is strong despite when I wrote in my last post.

If our marriage can survive this it can survive anything, as what can be more of a test to a relationship than finding out in such a hard way that your partner of so many years has been unfaithful, and that unfaithfulness led to us both acquiring what is an incurable virus. Few relationships have been so tested and in fact I know few couples that get along and love each other more than us .

So today I feel more positive.

We have made our third Valentines with our relationship still in tact despite the ups and downs that are bound to happen under the circumstances and with us both relatively healthy.

There is of course a lot more of our journey to go, a lot more learning for us both to do  and who knows how it will end .
But right now we are both here and together and basically in tact .

We have survived!!

Oh Dear - Not much hope for us then !!!

At 56 I already have memory loss and my mum died of Alzheimer's/Dementia (they did not bother to diagnose exactly what she had - too late by then all they knew is she had lost her marbles and needed round the clock care )

So with this family history and HIV I do not hold out much hope of my keeping my my wits for that much longer. Anyway it is all too obvious to me that they are on their way out already

So I had better break the habit of a lifetime and vote conservative so at least I will get cared for in a care home if I pay £8000 without my daughter losing our family home!

: http://www.timesonline.co.uk/tol/news/politics/article6862458.ece and pay what top ups I need to.

It is my biggest fear I loose my mind and end up with HIV in a care home!!

Do not tell me I will be respected? Or that I will not even be abused - I have seen it first hand , so you will not convince me .

I worked in care homes when young and visited elderly people I know often over the years

Also both my mother in law and my own mother were in care homes and while I guess my mum got better care than my MIL neither was what you would wish for......all was lacking in so many ways

But with HIV I know that I will never be treated with respect
___________________________________________________________
Neurologic Disease Facing Patients Aging with HIV

from Jules Levin

By now it's pretty clear aging with HIV and getting to over 55 yrs old is putting many patients at increased risk compared to HIV-negatives for frailty, increased neurological disorders and cognitive impairment, kidney disease, CVD, and of course bone disease and fractures.

Mortality will start to increase soon as a result of this development while we have been blindly rejoicing the success of HAART for years. BY devoting all our resources overseas we lost sight of these developments, and like turning an ocean liner around it is difficult now to get the NIH & NIAID to refocus effectively to address immediately tis time sensitive problem, if it's not too late already. the fact is currently it's estimated 20% with HIV in the USA are over 50 yrs old and by 2015 50% will be over 50. For the first time a significant portion of patients are reaching 65 yrs of age and facing increased HIV-related risk for vascular disease due to ARTs and HIV.

Mitochondrial toxicity has been present for 20-30 years for many patients. Abnormal metabolics including lipoatropy are threatening to cause neurologic disorders for older patients.

Frailty and gait disorders are emerging in older patients and in MACS. 60% of patients at 45 yrs old on average have osteopenia and 15% osteoporosis, isn't that stunning. It is time not to say we are aware of this, as researchers are saying, but it is time to declare an EMERGENCY situation before it's too late, it's already very late to or too late for many patients to benefit from research in this area.

What is the NIH thinking, where is leadership? Researchers, doctors, patients, and advocates should raise their cries for a declaration of emergency to address this NOW! Let me briefly mention HCV coinfection. 10 years ago I raised discussion about this problem that 30% had HCV in HIV, that 80% of IDUs had coinfection, that we were ignoring the needs crying out for greater attention. HCV became the leading cause for death and hospitalization besides AIDS. This problem persists, patients have been dying of end stage liver disease and the Federal government and advocates never launched a proper response. Will the same thing happen regarding aging?

Neurological Impairment Persists Despite HAART: "adjunctive therapies needed" - (08/29/09)

We need a proportional response to the level of problem we face
"The results of this study extend previous observations indicating that current HAART regimens are inadequate to treat HIV-related NC"...."These findings indicate that patients with more severe memory impairment and executive dysfunction are more likely to remain neurocognitively impaired despite HAART"

Mechanisms of Neuronal Injury and Death in HIV-1 Associated Dementia - (10/24/08)
Infection with the human immunodeficiency virus-1 (HIV-1) and acquired immunodeficiency syndrome (AIDS) remain a persistent and even growing health problem worldwide.

Besides its detrimental systemic effects on the immune system, HIV-1 seems to enter the brain very soon after peripheral infection and can induce severe and debilitating neurological problems that include behavioral abnormalities, motor dysfunction and frank dementia.

( yes I feel have this already can feel it it is so sad )


Infected peripheral immune cells, in particular macrophages, appear to infiltrate the CNS and provoke a neuropathological response involving all cell types in the brain. Both viral and host factors, such as the viral strain and the response of the host's immune system, strongly influence the course of HIV-1 disease.

Moreover, HIV 1-dependent disease processes in the periphery have a substantial effect on the pathology developing in the central nervous system (CNS), although the brain eventually harbors a distinctive viral population of its own. In the CNS, HIV-1 also initiates activation of chemokine receptors, inflammatory mediators, extracellular matrix-degrading enzymes and glutamate receptor-mediated excitotoxicity, all of which can activate numerous downstream signaling pathways and disturb neuronal and glial function. Although there have been substantial improvements in the control of viral infection in the periphery, an effective therapy for HIV-1 associated dementia (HAD) is still not in sight. This article will review recently identified injurious mechanisms potentially contributing to neuronal death in association with HIV-1 disease and discuss recent and prospective approaches for therapy and prevention of HAD.

"Mood changes approaching the extent of disorders are one of many problems associated with HIV-1 disease"

(God mood changes - tell me about it!
I have suffered this for over 7 years now! Yes you may say it might not be due to HIV , but I think it is . And does it matter what it is due to, I am suffering this and it is awful for me right now as I am all too aware it is happening to me right now )

"Neuronal death by apoptosis appears to be one of the hallmarks of neurodegenerative diseases including HAD"
"While HAART has tremendously improved the treatment of HIV-1 infection and disease in the periphery, an effective pharmacotherapy for HAD (HIV-associated dementia) is still not available."
"HAART is unlikely to prevent the entry of HIV-1 into the CNS"

"Neuronal damage and loss has been observed in distinct brain regions, including frontal cortex"......"signs of neuronal death were not clearly associated with viral burden or a history of dementia"...."aging-associated amyloid accumulation with Alzheimer's-like neuropathology"..... "Altogether, it seems that a vicious cycle of immune dysregulation, inflammation and BBB dysfunction is required on the side of the host to allow sufficient entry of infected or activated immune cells into the brain and to permit neuronal injury"
"These findings suggest that inflammatory cytokines, including TNF-aand IL-1beta, may have important regulatory roles in HIV-associated neuropathology"

The prevalence and incidence of neurocognitive impairment in the HAART era ACTG Research (08/30/07)

Even with HAART therapy, our data suggest that there is a significant subset of subjects on ALLRT who have mild-to-moderate neurocognitive impairment, and a subset that develop impairment after starting HAART. Additional studies are needed to understand the mechanisms behind neurocognitive impairment and to develop strategies to prevent and treat this condition."

HIV and Aging: The Long-term Consequences of Successful Antiretroviral Therapy - (09/11/09)

Study in Neurology journal (Aug 2008) Reports Alzheimers Appears to Precede Frailty and Study in Jnl of Geronotology (2007) in the MACS Cohort Reports Risk of Frailty Higher in HIV+ vs HIV-; is early onset of Alzheimers or some other brain or cognitive dysfunction related to early onset and higher rates of frailty among HIV+? - (06/08/09)

Higher frequency of dementia in older HIV-1 individuals The Hawaii Aging with HIV-1 Cohort - (11/18/08)

Dementia with features of Alzheimer's disease and HIV-associated dementia in an elderly man with AIDS (case study) - (05/13/09)

Neurologic Complications of HIV Disease and Their Treatment
The widespread use of ART has led to a decline in the more severe neurologic complications
of HIV, such as HAD, but people living with HIV continue to ...
www.natap.org/2009/CROI/croi_185.htm

HIV-1 Infection Is Associated With an Earlier Occurrence of a ...
"We examined whether the FRP was more likely to occur among individuals with comorbidities of cancers and neurological disorders, ascertained according to ...
www.natap.org/2009/HIV/042009_12.htm

Neurological/Cognitive Impairment on HAART: 50% on HAART have ...
Many factors likely contribute to ongoing neurologic complications despite the ability of current drugs to profoundly suppress viral replication. ...
www.natap.org/2008/HIV/121008_01.