Scotland first in UK to approve anti-HIV drug

Today the Scottish Medicines Consortium announced that PrEP is now approved for prescription on the NHS in Scotland, making it the first of the UK countries to make PrEP available on the NHS.

(Story via HIVScotland)

Availability and prescribing details are currently being confirmed by health boards but we understand patients should be able to access NHS funded PrEP within the next month in Scotland.

HIV Scotland believes this is a fantastic outcome towards reducing HIV transmissions, and shows what progress can be made when professionals and the community are able to join together to learn from each other and find solutions. Hundreds of community members across Scotland got in touch with us and other charities, attending information events, contributing to consultations and decision making groups, appealing to clinics. This outcome was only made possible by these collaborations.

We are promoting a live Twitter videocast tonight (10 April) between 9PM and 10PM – where a panel from HIV Scotland, Terrence Higgins Trust Scotland, and Waverley Care will answer initial questions from the community.

HIV Scotland will continue to offer our support to decision makers and service providers to make sure that PrEP and related HIV prevention services are ready.

We are making up-to-date information available on our website, and we will host an additional live twitter videocast for community to hear from a panel of doctors, nurses and other experts in April or May 2017 (specific date to be decided so stay tuned) by which time we expect implementation details to have been decided.

From our conversations with community over the past six months it is clear to us that there is a growing demand for access to PrEP in Scotland, and also a large amount of uncertaintly. If you consider that almost everyone knows fundamentally what a condom is and how it works, but few people as yet understand the basics of PrEP. This has implications not only for the people who are interested in taking or already use PrEP, but also for their sexual partners. In addition to this we need to ensure that service providers are confident in their own knowledge.

To address this we have partnered with the University of Edinburgh to develop very basic PrEP information resources, using the HIV Literacy work developed by Dr Ingrid Young, and will continue to support work through the SHBBV Executive Leads, NHS Education Scotland, and SHIVAG to make PrEP information available to professionals.

In the meantime if you have any questions at all please get in touch with Kelsey Smith.

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Generation HIV: the young Britons born HIV positive

Today is National Youth HIV AIDS Awareness Day (#NYHAAD)

National Youth HIV & AIDS Awareness Day is a day to educate the public about the impact of HIV and AIDS on young people as well as highlight the amazing work young people are doing across the country to fight the HIV & AIDS epidemic.

Take a look at this video which tells the story of a group of young people.  They were born in the 90s, when mother-to-child transmission couldn’t be prevented, but HIV positive babies could survive. No other generation will ever live with HIV in the same way.

They tell Jenny Kleeman, a documentary film-maker and journalist who is best known for her work on Channel 4’s foreign affairs series Unreported World that their greatest threat is not HIV – but stigma.

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(Scotland): Decision due on ‘game-changer’ Prep HIV drug

Medical chiefs in Scotland are due to announce whether a “game-changing” drug which can prevent HIV infection will be made available on the NHS.

(Story via BBC)

Research suggests a daily dose of a drug known as Prep can protect people at risk of contracting the virus.

HIV Scotland said it was “very hopeful” the Scottish Medicines Consortium (SMC) would approve the medication.

It means Scotland would become the first place in the UK to make it available on the NHS.

Campaigners estimate that up to 1,900 people north of the border could benefit from the drug, which has the brand name Truvada.

The anti-retroviral drug is currently licensed for use in Scotland, where it is used by people already diagnosed with HIV.

However, the SMC’s decision relates to its use on a preventative basis by people who do not have the virus.

What does Prep do?

Pre-exposure prophylaxis (or Prep for short) is a small, blue pill.

The pill works by protecting cells in the body and disabling the virus to stop it multiplying – should it enter the body.

Taking it once a day has been found to reduce the risk of HIV infection by 86%.

It is currently used in the US, Canada, Australia and France to help protect gay men at the highest risk of contracting HIV.


There is a growing demand for the treatment in Scotland, according to HIV Scotland’s chief executive George Valiotis.

He estimates that “a couple of dozen” Scots are using variants of the drug after buying generic versions online.

The Scottish government wrote to Gilead, the manufacturer of Truvada, to urge them to make an application to the SMC last year.

It followed a series of legal battles in England over whether the NHS or local authorities should pay for the medication.

The Court of Appeal eventually ruled that NHS England had the power to fund the drug,

The decision did not mean that NHS England had to fund Prep but in December it announced plans for a large scale clinical trial of the drug, expected to involve 10,000 participants over three years.


‘Why I buy Prep online’

Gordon Garioch is one of around “a couple of dozen” people in Scotland thought to be taking Prep regularly.

He told BBC Radio Scotland’s Good Morning Scotland that he was initially prescribed the drug by a private clinic but it was too expensive.

He now spends around £50 a month on a generic form of the drug he purchases from an online pharmacy.

“It gives me reassurance,” he said. “I’ve always been careful.

“My friends have always been careful but for some reason they became positive. So I take this extra reassurance for me to prevent myself becoming positive.”

Asked what the benefits of the decision would be, he replied: “To me personally, obviously it would be the cost.

“But it’s a generation thing as well, to prevent HIV for future generations for people who are not as lucky as myself who can pay for it.”


Speaking on BBC Radio 4’s Today programme, Mr Valiotis, of HIV Scotland, said: “Prep makes good sense. We know that it works. We know that it stops people from getting HIV, and we know that it’s cost-effective.

“And because it’s cost-effective, what that means is that it makes more money available in the long-term on the NHS to treat lots of other things as well.”

Asked if he thought the SMC would approve the drug, he said: “I’m feeling pretty hopeful because the cost-effectiveness is clear, as is the clinical-effectiveness.

“We know this works. I would be surprised if it’s a no but it’s too hard to guess.”

HIV Scotland believes the use of Prep has played a part in reducing the number of HIV infections in Scotland.

The latest figures from Health Protection Scotland show 285 new cases of HIV were reported in 2016, down from an annual average of 359 over the last five years.

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The number of new HIV diagnoses in Midlands soared five times in the last two decades

It’s easy to get tested for HIV, speak with your GP, visit LASS, find your local HIV centre or even do a test at home!

The number of new HIV diagnoses in Midlands and the East of England soared five times in the last two decade.  Cases have risen from 238 in 1997 to 1,181 in 2015.

Story via Grimsby Telegraph

The increase started after a relatively stable period between 1986 and 1996, when the number of new HIV diagnoses fluctuated between 190 and 204.

Much of the increase occurred between 1997 and 2004 when the number of people newly diagnosed with HIV went from 238 to 1,552, the peak in the 30-year period.  The highest number of deaths was in 1994, when 149 people died as a result of HIV/AIDS, the vast majority of whom were male.

While HIV is now commonly seen as a treatable disease due to advances in retroviral drugs, there were still 97 deaths in 2015.  The majority of new HIV diagnoses occurs in people aged 35-49. There were 19,018 from 2000 to 2015 and more than a half, or 10,627, were men.

In recent years, sex between men has once again became the main source of probable transmission of HIV.

Since 2000, there have actually been more diagnoses caused by heterosexual sex – 12,230- than by men having sex with men (4,940 cases).  In 2015, there were 402 such cases compared to 516 diagnoses linked to heterosexual sex.

A further 33 cases were caused by drug use, 21 were mother-to-child transmissions, and 12 were caused by blood transfusions and products.

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Depression, what it is, and how to get help.

Depression by Tom Robson

Depression is a hard condition to live with, it’s subtle and those who never have the experience will perhaps never understand how greatly it affects the individual. Often it’s mistaken for being withdrawn, unapproachable or antagonistic, with no empathy for the person experiencing this ‘pain’.  This pain is  manifest as reduced abilities to communicate and interact at the same pace of other peers, yet what depressed people say and do, is merely a fraction of what they’re thinking.

There is no cure for depression and there is no point within recovery when you ‘know’ you’re over an episode of it. (And you never know when the next episode will begin).

There are several ideas about what causes depression. It can vary a lot between different people, and for some people a combination of different factors may cause their depression. Some find that they become depressed without any obvious reason.  You can read more on the condition over at Mind.org,uk

Every year, World Health Day is celebrated on 7th April with a distinct theme. While last year’s focus was on diabetes, this year the spotlight is on one of the most underrated mental disorders – depression. Most people don’t like talking about it, while others simply don’t treat it as a severe, debilitating condition.  A quick look at the statistics is enough to understand the appalling severity of the rising number of depression cases. Depression, when unchecked can assume a menacing character with many succumbing to it and ending their lives. Depression can affect a person’s overall well-being. People suffering from depression can experience difficulty in carrying out their day to day activities. They may feel a sudden withdrawal from activities that were once enjoyable to them. Social aloofness is also one of the characteristics.

“At worst, depression can lead to suicide, now the second leading cause of death among 15-29-year olds,” WHO. Depression in people rose by 18% between 2005 and 2015. It is also the largest cause of disability in the world with most people falling prey to it from low to middle income countries. Suicide rate are also high in low to middle income countries in young people ageing 20-25. WHO’s study depicts more suicide cases in men as compare to women all across the globe.

This World Health Day is not only dedicated to understanding depression better but embracing the wide spectrum of mental disorders as well. The day calls for developing empathy towards every sad face and a will to pierce through the veils of loneliness that might push somebody into depression.

Men living with HIV have an elevated rate of suicide, particularly in the first year after diagnosis, according to a fifteen-year study of almost 90,000 people diagnosed with HIV in England and Wales, with comparison against the general population. Sara Croxford of Public Health England presented the findings to the British HIV Association conference in Liverpool yesterday.

You can read more about how suicide accounts for 2% of deaths in people with HIV, twice the rate of the general population over at NAM.

If you’re feeling stressed, anxious, tense or depressed and find that these feelings are impacting on your relationships, work, or life generally, talk to your GP.  There are therapies and other treatments which can help.

In a mental health crisis?  See your GP who can refer you to the Mental Health Crisis Response Team. Alternatively you can call the local Richmond fellowship crisis helpline on Freephone 0808 8003302 (2pm- 1.30am)

Feeling suicidal now? – Call the Samaritans on 116 123

You can also speak Help and advice can also be found at LAMPNetwork for ChangeMINDHealth for Teens and Time to Change. There are also a range of NHS-endorsed digital applications that can help treat depression and anxiety and improve access to psychological therapies.

GP’s use a relatively simple questionnaire to monitor the severity of depression and response to treatment. It is not a screening tool for depression, however it can be used to make a tentative diagnosis of depression.  You can view this questionnaire over at Patient.info

Do you know someone who is suffering depression?  You may want to help but can’t seem to find a way in?  When a family member or friend suffers from depression, your support and encouragement can play an important role in his or her recovery. Mind.org,uk offer practical help which you can use to help you support someone in need.

 

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Damien Hirst has painted George Michael to raise money for HIV/AIDS, and it’s beautiful

In the time since he passed on that bittersweet Christmas Day last year, it has sometimes seemed as if the lives of LGBT+ people, and the world in general, are just a little greyer with him gone.

Story via GT

Luckily, gorgeous George is back in glorious technicolour today, in a beautiful painting by artist Damien Hirst, which will be sold at a charity gala in Texas on Friday night, with the proceeds going to help treatment for people with HIV/AIDS.

You didn’t think George would let a little thing like death stop him from doing some good in the world, did you?

The event will be held in Texas by MTV Re:Define, a contemporary art showcase, and co-chaired by the Goss-Michael Foundation – a British art exhibition which George co-created with his ex-partner Kenny Goss.

“This year is poignant as we celebrate George. We’ve been honoured by his and Kenny’s support,” event organiser Georgia Arnold told The Sun.

“We look forward to continuing to raise awareness and support for our mission, and especially thank all the artists for their involvement and generosity.”

It has emerged that George is to be buried in Highgate Cemetery, north London, next to his late mother who he was devoted to – it was always his plan to be laid to rest next to her.

Security at the cemetery has been increased to 24 hours a day to stop any interference with the plot that has been prepared for George, next to Lesley’s.

George’s £105m fortune will now be split between his loved ones and various charities – he was famously generous with his wealth whilst he was alive, including an instance in which he tipped a barmaid five thousand pounds because she was a student nurse in debt.

He was also a trailblazer for gay rights in the music industry, famously refusing to apologise for being gay in his 1998 CNN coming out interview, saying: “I don’t feel any shame whatsoever and neither do I think I should.”

Well said George – rest easy our friend.

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Thank You to HRH Prince Harry & LASS Partner Organisations

HRH Prince Harry with Salma Ravat & Nadine Coogan (Photo: Tom Robson @tjrfoto)

Partner organisations joined LASS in a training session led by Juliet Kisob and Sadiya Mohamed.  They looked at the role of community HIV testing in encouraging people to know their HIV status and to help reduce late diagnosis.

CEO Jenny Hand introduces HRH Prince Harry to Sadiya Mohamed & Juliet Kisob. (Photo: Tom Robson @tjrfoto)

They were joined by HRH Prince Harry for workshops where they used a case study to look at how critical partnerships are to breaking down stigma and to identify new places for LASS to test in our 30th year. In Leicester 59% of patients are diagnosed late, which is 20% higher than the national average.

HRH Prince Harry unveils a unveiled a plaque marking the start of LASS’s 30th year. With Evernice Tirivanhu, Jenny Hand & David Rowlands (Photo/Animation: Tom Robson @tjrfoto)

Prince Harry unveiled a plaque marking his visit and 30 years of LASS. He invited trustee Evernice Tirivanhu to assist him She said: “It’s quite a special day for us.
“People living with HIV have to fight a lot of stigma, and to find that members of the royal family are willing to come and support the charity is very encouraging.”
Prince Harry’s visit came as the National AIDS Trust reported “an alarming trend for cutting or completely decommissioning HIV support services across England and Wales”.

LASS has been absolutely delighted to welcome partner organisations yesterday.  By working together we demonstrate unity within the voluntary sector and strengthen the approach of social care, support and advocacy across Leicester, Leicestershire, Rutland and the East Midlands.

You can find coverage of Prince Harry’s visit to LASS, and other Leicester Projects from the following news outlets.  Photographs from the training session are in the gallery below.

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