Tag Archives: prejudice

A Child, growing up with HIV: Clinics with codenames and secrets from schoolfriends

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For many years Daniel was told that he had bugs in his blood and needed tablets and regular blood tests to control them. At 11, his HIV diagnosis was revealed – and he was told to keep it a secret
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One of Danny Germain’s most treasured memories is being 5 years old, cuddled up on the sofa with his mother Millie, watching a documentary about polar bears.  Millie Germain, a New Yorker of Puerto Rican heritage, passed away the next day.  She was HIV+ and died of AIDS-related complications.

Millie had met Danny’s father, Richard, when he was working in New York.  He fell in love with this bright, vibrant Latino girl, they were married, and soon after she found she was pregnant with their much-wanted first child.

It was during routine pregnancy blood tests that an anomaly was found and further investigations revealed that Millie had HIV. Richard tested negative. She had probably contracted it from a previous long-term boyfriend. It was 1992 and the medical world was still learning about the virus.

Millie and Danny as a child

Millie and Danny as a child

When Daniel was born there was a 1 in 6 chance he would also be HIV+ but his parents would not know that he had also contracted the virus until he was 18 months old. Millie, wracked with guilt for passing on the virus to her son, was becoming progressively weaker.  By this time the family were living back in Richard’s home town in rural Suffolk and the family struggled to manage the care needs of a feisty toddler with his mother’s deteriorating health – all the while keeping the truth behind Millie’s frequent hospitalisations a secret.

During the early nineties, the stigma around HIV/AIDS was as strong as ever, it was seen as a disease of promiscuity, drug use and the gay community. After Millie passed away Richard had to protect his little boy and carry the burden of keeping his diagnosis a secret.  Even the hospital clinic had a code name so that it could not be identified, and the doctors and nurses who chose to work there were considered exceptionally brave by their colleagues.

For many years Richard explained to Daniel that he had bugs in his blood and needed tablets and regular blood tests to control them. At the age of 11, he was told that these ‘bugs’ were in fact the HIV virus.  He was also told not to tell anyone.

In the intervening years Richard met Marion, who became a supportive stepmother to Danny.  Richard and Marion had two daughters, Danny’s sisters, and with the help of medical advances Danny’s daily cocktail of drugs reduced the virus in his bloodstream to undetectable levels.

From the moment he learned that he was HIV+, Danny wanted to tell others – but he knew he had to keep his status secret to protect himself from the prejudice that surrounded the disease.  For him the burden was not the disease itself – he was leading a full life, going to school, skiing, scuba diving, and blood tests and daily medication seemed minor inconveniences in the grand scheme of things – but the stigma attached to it.

On graduating from university, Danny began a career as a freelance photographer and film maker, and had become frustrated at living with the secret any longer. He knew from all those clinics he attended as a child that there were lots of other young people like him who were also carrying with them a similar burden of secrecy.

And so, on the anniversary of his mother’s death, he publicly announced his HIV status in a film project titled 27.11.15. He visited aunts and cousins, university friends and extended family members and told them his secret in person. With his father and Marion at his side, he told his teenage sisters. Finally, he went back to speak to the doctors and nurses who had first treated him as a child, and the medical staff who had cared for his mother.

What is obvious in Danny’s story is the love, hope and indeed the normality possible after a diagnosis of HIV. Put simply, it is simply unacceptable that surrounding prejudices are now more of an issue to sufferers than the condition itself. In 2015, we have a responsibility to address this shocking truth.

Danny and Marion

Danny and Marion

 

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Gay blood: Ban by Edwin Poots ‘infected by apparent bias’

The gay blood ban, put in place during the 1980s AIDS threat, was lifted in England, Scotland and Wales in November 2011.

The gay blood ban, put in place during the 1980s AIDS threat, was lifted in England, Scotland and Wales in November 2011.

A former health minister’s ban on the donation of blood from gay men in Northern Ireland was “infected by apparent bias”, a court has ruled.

A judge also backed claims from lawyers for a gay man that Edwin Poots’ stance was influenced by Christian beliefs.

The High Court ruling strengthens a previous finding in October 2013that the ban was irrational.

Mr Poots, who is to appeal that ruling, was replaced as Stormont’s health minister last year.

The gay blood ban, put in place during the 1980s AIDS threat, was lifted in England, Scotland and Wales in November 2011.

The minister has consistently rejected claims that his position may have been influenced by his religious views

The minister has consistently rejected claims that his position may have been influenced by his religious views

It was replaced by new rules which allow donations from gay men who had not had sexual contact with another man for more than a year.

But Mr Poots maintained the prohibition in Northern Ireland on the basis of ensuring public safety.

The minister has consistently rejected claims that his position may have been influenced by religious views.

But lawyers for the gay man who brought the challenge, introduced remarks made by Mr Poots in the Northern Ireland Assembly.

The DUP MLA was recorded as saying: “There is a continual battering of Christian principles, and I have to say this – shame on the courts, for going down the route of constantly attacking Christian principles, Christian ethics and Christian morals, on which this society was based and which have given us a very good foundation.”

The judge cited a news article from 2001 in which Mr Poots spoke of the rights of those receiving donations to be told they were getting “clean blood” uncontaminated by the HIV virus.

He added: “The minister’s very troubling lack of candour and his attempt to conceal the fact that he had made a decision are plainly circumstances that are material to whether a fair-minded and informed observer would conclude that there was a real possibility of bias.”

via BBC News

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Older HIV patients ‘need more support’

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Around a quarter of the 100,000 people with HIV in the UK are over 50

The older generation of people with HIV need better support to keep them well, nurses say.

About a quarter of the 100,000 people with HIV in the UK are aged over 50.

Two-thirds of these are on treatment for other long-term conditions – twice the rate for the general population, Terrence Higgins Trust data shows.

The charity and the Royal College of Nursing said this “silent generation” of older HIV patients need better co-ordinated care to stay healthy.

The issue is set to be debated at the Royal College of Nursing conference which is being held in Liverpool this week.

With people living for longer with HIV thanks to advances in treatment, nurses have reported they are seeing more patients with the condition seek help for conditions associated with old age.

‘Better co-ordinated’

RCN public health forum chairman Jason Warriner said: “For the first time, we have a generation of older people living with HIV and having to cope with the ageing process.

“They have respiratory problems, diabetes and heart disease. That is proving challenging. You have to be careful about drug interactions and other complications.

“Nurses need more training and we need to ensure patients are not getting passed around from health professional to health professional. Their care needs to be better co-ordinated.”

Dr Rosemary Gillespie, chief executive at the Terrence Higgins Trust charity, said: “As the people living with HIV in this country grow older, many of them will face a number of related health issues.

“They will be looking to healthcare staff to treat their condition sensibly and sensitively. Nurses have a central role to play in this, to ensure that people with HIV are not just living longer but living well, and receive the care they deserve.”

Stigma

Maurice Greenham was diagnosed with HIV in 1984.

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Speaking to BBC Breakfast, he said there was still a stigma about having HIV.

“It’s getting better because it’s being talked about,” he said.

“I’m fortunate. I feel comfortable with my diagnosis and I’m out as a gay man living with HIV and very few people of my generation do feel comfortable talking about HIV and indeed going to support groups.”

Dr Mark Lawton, a sexual health consultant at Royal Liverpool Hospital, said there was some data which suggested that some people who worked in care homes had a negative attitude, and also that there was an “overwhelming lack of knowledge and understanding”.

“There are still problems – people not getting tested because they don’t think they’re at risk of getting HIV and HIV doesn’t discriminate and we shouldn’t,” he added.

A Department of Health spokesman said: “It’s unacceptable that people diagnosed with HIV should face any form of stigma, discrimination or prejudice.

“Older people diagnosed with HIV should be able to access any additional health and social care services they need to ensure they can live independent and fulfilled lives.”

Story via BBC

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AIDS: Don’t Die of Prejudice!

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Eighteen million people around the world live with HIV but do not know they are infected. Endangering both themselves and countless others, they represent a public health challenge that affects not only Africa but every part of the world, including Europe and the United States. We stand at a tipping point in the AIDS crisis – and unless we can increase the numbers tested and treated, we will not defeat it. In spite of the progress since the 1980s there are still over 1.5 million deaths and over 2 million new HIV infections a year.

Former Health Secretary Lord Fowler has travelled to nine cities around the globe to report on the position today. What he discovered was a shocking blend of ignorance, prejudice, bigotry and intolerance. In Africa and Eastern Europe, a rising tide of discrimination against gay and lesbian individuals prevents many from coming forward for testing. In Russia, drug users are dying because an intolerant government refuses to introduce the policies that would save them. Extraordinarily, Washington has followed suit and excluded financial help for proven policies on drugs, and has turned its back on sex workers.

Norman Fowler started his career as a journalist at The Times and for over thirty years was an elected MP, serving in Margaret Thatcher’s Cabinet before becoming Chairman of the Conservative Party under John Major. He joined the House of Lords in 2001. He is the longest-serving British Health Secretary since the Second World War, and has devoted much of his life to raising awareness about HIV/AIDS.

Aids cover 2.inddIn his new book “AIDS: Don’t die of Prejudice” Norman Fowler reveals the steps that must be taken to prevent a global tragedy. Aids: Don’t Die of Prejudice is a lucid yet powerful account, both an in-depth investigation and an impassioned call to arms against the greatest public health threat in the world today.

 

We ordered a couple of copies which arrived today, our staff will share and read this book and in a couple of weeks, I’ll ask them what they thought of it and gather their opinions for you to read.  If you own your own copy (Amazon Link) we’d like to hear your views, let us know in the comments..

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