HIV, Lifestyle, Ageing and Death

posted: 30/04/2010

Lifestyle and social factors that harm health must be dealt with if people with HIV are to have the full benefit of the extra lifespan won by HIV treatments, according to a new major study.

HIV itself is less and less likely to cause someone’s death. Instead diseases linked with ageing are often worsened by HIV and it is these that will be the main killers of people with HIV.

Diseases such as cardiovascular disease (causing strokes, heart attacks), non-AIDS-defining cancers (lung cancer), kidney disease and liver disease, are major causes of death now for people with HIV. There have been big falls in deaths from AIDS-defining opportunistic infections and cancers.

What's happening at the end of a life with HIV?

The numbers and causes of death among almost 40,000 people with HIV in Europe and N America were studied for the ten years 1996 - 2006. AIDS deaths fell, but deaths from non-HIV-related diseases, such as lung cancer, rose.

Causes of deaths – HIV or Not?
There were 1876 deaths (5%), or 12 deaths per 1000 person-years. Those who died had lower CD4 counts at diagnosis than those who lived beyond the end of this study in 2006.

The cause of death was known for 1597 people. Almost half (49.6%) died of AIDS. When the investigators looked at these AIDS-deaths closer, they found

• 23% of all deaths were due to AIDS-defining infections, and
• 15% to AIDS-defining cancers.

Not HIV deaths – lung cancer is the biggest killer

• Non-AIDS-defining cancers were the biggest non-HIV cause of deaths (12%). Over a third (37%) of these non-AIDS-defining cancer deaths were from lung cancer.
• Non-HIV infections caused 8% of all deaths
• Cardiovascular disease killed another 8%
• Violence accounted for 8% of deaths (many in this study live in the USA where gun crime is a serious problem)
• Liver disease kills 7%
• Lung and breathing diseases 2%
• Kidney failure ends life for another 2%.

Low CD4 counts and high Viral Load - a predictor

A low CD4 cell count when treatment is begun significantly increases the risk of death from non-AIDS-related cancers and renal cancers.

High Viral loads when treatment is begun also show the same pattern - there’s an increased risk of death due to AIDS defining conditions, HIV-related infections, cardiovascular disease, and breathing disorders.

Older risks

Older age was strongly associated with an increased risk of death from non-AIDS-related cancers, cardiovascular disease and the rate of kidney-related death was especially high amongst people over 60. The investigators believe that these results “imply that the process of aging will become a dominant factor in HIV mortality in the next decade.”

Women less likely to die earlier
Overall, death rates were 16% lower in women than men. And women were 50% less likely than men to die of non-AIDS-related cancers.

Longer on treatment, the lower the risk
As the length of time on HIV treatments rose, the risk of death from AIDS, non-AIDS-related infections, and kidney disease fell. People who begun HIV therapy after 2000 were significantly less likely to later die of AIDS. “Antiretroviral therapy continues to dramatically reduce rates of mortality attributable to HIV infection in high-income countries,” conclude the investigators.

Deal with the social and lifestyle killers – like smoking
However, they express concern about the high mortality rates due to conditions “associated with social and lifestyle factors…the importance of lifestyle is reinforced by the observation that the most common non-AIDS malignancy was lung cancer, likely caused by smoking.”

The investigators believe that these findings have implications for the care of patients with HIV. They suggest: “interventions to address risk factors for lifestyle-related causes of death, as well as monitoring for and care of diseases associated with old age, will be necessary if the full benefit of antiretroviral therapy in decreasing mortality is to continue n the second decade of antiretroviral treatment.”

Source and reference details

Living Wills (Advance Decisions)

posted: 30/04/2010

An Advance Decision is the new legal name for what were called Living Wills. An Advance Decision / Living Will is an official paper that tells people in what circumstances you want them to stop giving you certain medical treatment.

These are used by people concerned that in the future, they may become unable to tell the people around them whether they want any more treatment.
 

A recent change in the law (Mental Capacity Act) means Terrence Higgins Trust has suspended its Living Wills Service while it makes sure its Advance Decisions / Living Wills form fits with this law.
 

Things you need to think about

There is much more information on Advance Decisions on the DirectGove website and we recommend you think carefully about the advice given there.

Meanwhile Terrence Higgins Trust suggest you consider this Advance Decision from Compassion in Dying.

Other useful help

Dealing With Death and Bereavement leaflet from THT

Sanctions for Ugandan legal HIV-phobia?

posted: 21/04/2010

Plans are being made to stop the Ugandan MP from entering the UK, who is pushing a proposed law that would mean the death penalty for gay men with HIV who have sex.
 

Civil servants in the Foreign Office, the Department for International Development, and the UK Border Agency are planning to cancel the UK travel visa of born-again Christian MP David Bahati. They want him to drop his law that would see consenting adults who have gay sex imprisoned for life, and which would impose the death penalty on those with HIV – offences called "aggravated homosexuality".
 

The bill also proposes the death penalty for those having gay sex with anyone under the age of 18, with someone disabled or what the legislation describes as "serial offenders". It also calls for life prison sentences for those "promoting homosexuality", which could come to mean human rights groups or those who fail to inform on a gay couple.
 

Expect a Diplomatic Incident
One senior British government source said the issue could turn into a "major diplomatic incident if the Ugandans do not back down". President Barack Obama has already described the legislation as odious. The British government's views have been conveyed to Uganda but officials have not received a clear sense of whether the legislature will pass the bill into law. Ugandan government officials appear to be using stalling tactics, suggesting it will not come to a vote until 2011, deflecting pressure from a government that could change in the forthcoming general election.
 

Bahati submitted a private member's bill to the Ugandan parliament last year arguing that homosexuality is a lifestyle choice. Gay sex is already illegal in Uganda but backbenchers there are pushing for more draconian punishment by preying on fears that homosexuals are "recruiting" children at schools. Though observers believe President Yoweri Museveni was beaten back by the level of international opprobrium, a march against homosexuality in Uganda last month attracted 2,000 supporters.
 

African anti-gay wave
The British government is concerned by a wave of anti-gay sentiment sweeping Africa that has also put pressure on homosexual people in Zimbabwe, Zambia and Nigeria.

Sanctions on the way
Besides cancelling the travel visa of the backbencher, other options considered include blocking aid to the Ugandan government. However it seems the government has switched to blocking individuals’ visas, amidst signs that threats to withhold aid could backfire. Bishop Joseph Bvumbwe, chairman of the Malawi Council of Churches, has accused western donors of trying to use aid as a lever to force Malawi to legalise homosexuality. British officials have already cancelled the visas of those involved in the Kenyan election riots and members of the Zimbabwean government.
 

Source
 

HIV+ Mother and Baby Loss

posted: 24/03/2010

The HIV positive mother of a 10 month old baby boy died two days after her own son, who starved to death. The real causes of the mother and baby deaths seem to be the mother’s mental ill-health and HIV stigma, along with missed opportunities and possible failings by health and social care services.
 

The 10-month-old boy wasted away in his pram at his mother's London flat where he was seen at least 15 times, in six months, by nine care professionals. Although experts were concerned about the child's deteriorating health, not enough was done to save the child, because officials and help were turned away by the mother.
 

The baby was found dead, emaciated and surrounded by rotting food on March 8 after a 999 call from his mother's council flat. The post-mortem showed his stomach was empty and he had not eaten for days. He had suffered a 'long period of malnourishment' and his weight had plummeted since Christmas by a third, to 12.5lb.
 

Interpreter refused because of stigma fears

Police began a murder inquiry and his 29-year-old migrant mother was arrested for child neglect. She had avoided contact with care services by saying her human rights would be breached if they used an interpreter to question her - in case the close-knit Eritrean community found out she had HIV. She was allowed to keep both her baby boy and his four-year-old sister.
 

Mum's failing mental health

There were concerns about her parenting skills, she was 'hearing voices' and had expressed fears for her baby's health. After her arrest she was rushed to hospital after only an hour, where she died two days after her son, from a rare brain condition linked to HIV.
 

George House Trust comment
 

This item is based on a Daily Mail news report (the only source we have found) that blamed health and children’s social services for the baby’s death.

We think that the real story is that

• The mother was seriously mentally ill with a rare HIV-related rare brain condition and seems not to have had treatment for this. Her own neglected long-term mental illness caused the child's neglect – like she neglected her own health, dying just two days after her son.
• The mother was very worried by HIV stigma and rejection by the local Eritrean community. So she refused to allow services to use any interpreter because she feared her HIV status would then become known among Eritreans.

There is not enough information to fairly judge whether health and social care services failed, because the Daily Mail's confidential information came from just one of many services that were involved. 

Lessons and issues

However it does appear that there are useful lessons to be learned from holding a multi-agency case review. It's not simply about 'what should have been done to protect her baby boy' but about meeting her own needs for mental health support and treatment. There are difficult ethical dilemmas - like everyone else she has autonomy, the right to decide about her own treatment and care. No-one can force competent adults to have treatment they don't want. But was she able to look after her own health when she was showing significant symptoms of mental distress? And should we use different rules when there is a baby involved? Why wasn't telephone interpretation provided (this would have protected her identity)?

This was a family of three in crisis for some months and only the baby seems to have been of concern - the whole family's situation and needs seem to have been overlooked.  

HIV stigma is dangerous

This is one more case demonstrating why challenging and ending HIV stigma, especially among vulnerable migrant communities, is so important.

Some more detail on the deaths and the events leading up to these

In September 2009, she was rehoused in London after moving from Birmingham after she was beaten up by her partner. A series of visits by health visitors and social workers from Westminster City Council followed. But despite a growing file of evidence that all was not well, nothing was done. The last visit to the flat in St John's Wood was made on March 1. A week later, the boy was dead in his pram. A neighbour said: 'We used to hear her baby and an older child crying all the time. On March 8 my son heard a scream at around seven in the morning.'
 

Two health trusts were responsible for the family. A confidential report by one of the trusts - the Central and North West London NHS Foundation Trust said: 'Post mortem results on the infant showed that he had no food in his gut at all and so had not eaten for several days at least. However, there is evidence of a long period of malnourishment.' But, after a nine-day investigation, the report concluded there are no lessons to be learnt.
 

Michael O'Connor, Westminster City Council's director for children and young people, said: 'Neither of the children were on the child protection register and there is no suggestion that they were at risk.'

Terry Bamford of Westminster's Local Safeguarding Children Board, said an independent serious case review would take place. Central and North West London Trust refused to comment and Imperial College Healthcare NHS Trust said it was carrying out its own inquiry.
 

Key Man for HIV Dies

posted: 18/01/2010

Sir Donald Acheson, who has died aged 83, was chief medical officer (CMO) between 1983 and 1991. He’s widely recognised as the key policymaker at the start of the UK's drive against HIV. He helped the UK to set a liberal and enlightened example for other countries.
 

The shock of the emergence of a deadly new epidemic, HIV, is only equalled by the shock, in retrospect, of Acheson's success in persuading Margaret Thatcher's Conservative government to adopt a liberal approach to tackling the sexually driven disease.

It involved massive health education programmes, in parallel with detailed plans to accurately track and combat the spread of HIV.

No to compulsory testing and notification

He persuaded ministers to drop plans for the compulsory HIV testing and for making it a compulsory notifiable disease – on the grounds that it would deter people – almost all of them gay men- from seeking help, as earlier exercises with sexual epidemic campaigns had experienced.
The focus was on harm reduction not prohibition. Safe sex rather than no sex. He even obtained Conservative consent to what was, in effect, a scheme which condoned illegal drug use – needle exchanges for drug addicts, which had demonstrated their success in dramatically reducing the spread of HIV in Amsterdam and Berlin.
 

How did he do it? Acheson, born in Belfast and educated in Edinburgh and Oxford, arrived at the Health Department after spending more than 20 years studying diseases in hospitals or medical research units in London, Oxford and Southampton. Better still, in terms of the impending HIV crisis, he was an epidemiologist: an investigator of the causes and control of epidemics. He brought with him an important epidemiological principle: all actions should be based on scientific evidence and, where evidence is lacking, a precautionary principle should be applied.
 

There were just 28 people known to have AIDS in the UK when he started work as CMO. There was no HIV policy and no known cure. One initial challenge facing the new CMO was the need to integrate two separate medical worlds: biomedicine and public health (screening, education, epidemiology).
He also successfully bridged two other groups: the medical world and the gay community, where the disease initially was most prevalent. He set up an informal group of senior medics and public health officials, to which he also invited people from the Terrence Higgins Trust, an HIV charity with its roots in the gay community. From there he moved on to establishing an expert advisory group, which he chaired. [It was not quite like this - see George House Trust comments below]

As one medical historian has noted: "His passionate conviction that this epidemic must be quashed before it could take hold was one of his main strengths in persuading the government and his colleagues to take the disease seriously." She added that Acheson "ate and slept AIDS from 1985 onwards".
 

A large, well-funded and sustained education campaign began in 1986 with press and television adverts along with "AIDS – don't die of ignorance" leaflets circulated to 23m homes. Ministerial press briefings followed. By February 1987, an AIDS week involved 19 hours of public service broadcasting across the four TV channels that existed at the time.
 

The campaign achieved unstoppable momentum. Acheson went on to ¬broker international guidelines within the World Health Organisation, ensuring the dominant ideology remained the British liberal consensus. By the time of his retirement in 1991, HIV in the UK had moved from initial shock through several intermediate phases towards becoming a manageable chronic condition in 1996. Many of the hundreds of hospital beds that had been earmarked were found not to be needed.

Ernest Donald Acheson, medical officer, born 17 September 1926; died 10 January 2010

Source
 

George House Trust comment
 

This edited version of the obituary by Malcolm Dean doesn’t acknowledge how very much more gay men across the country, including in Manchester, contributed. Gay men in the UK were loud and insistent about the need for the government to treat HIV seriously from the very first reports coming out of the USA that started appearing at the beginning of the 1980s, but only in the gay press.

It wasn’t simply Donald Acheson wisely deciding to invite Terrence Higgins Trust to join his informal advisory group. It was gay men demanding to have a say and to be fully involved in advising and deciding government policy and practice. Acheson was able to employ this powerful gay grass roots activism to help him persuade ministers to take some of the more politically unpopular decisions.