The Governor of California has signed a law requiring education about HIV-preventing drugs.

Yes, you did read that headline correct! – While our NHS is arguing why it shouldn’t be providing, cost effective, life saving and game changing anti-HIV medicine, over the pond  a new law has just been introduced requiring education about PrEP.

In case you’re unaware, PrEP stands for ‘Pre-exposure Prophylaxis’ and is available in a drug called Truvada.  Taking Truvada (or a cheaper, generic version) can reduce the chances of being infected with HIV by up to 99% if taken daily.

It’s a game changer for HIV prevention and has been endorsed by the World Health Organisation and Centers for Disease Control and Prevention for regular use by at-risk men who have sex with men.

Yesterday (Tuesday) Governor of California Jerry Brown signed a law introducing education about PrEP into the standard routine for those undergoing HIV tests.  Reports Pink News.

AB 2640, co-sponsored by the Los Angeles LGBT Center and APLA Health, ensures high-risk HIV-negative individuals receive information about methods that reduce the risk of contracting HIV, including PrEP and PEP, during HIV post-test counseling.

APLA Health Chief Executive Officer Craig E. Thompson said: “We are extremely pleased that Governor Brown has signed this bill into law.

“This is one of several proposals the governor has supported to increase information about and the availability of PrEP and PEP, and we thank him for his continued leadership on this issue.

 “AB 2640 is a crucial step toward raising awareness about effective HIV prevention tools, reducing new infections, and ending the epidemic in California.”

Los Angeles LGBT Center Medical Director Dr. Robert Bolan said: “With the stroke of his pen, Governor Brown has played a significant and groundbreaking role in helping to fight HIV in the state that ranks second in the nation in cumulative AIDS cases.

“Those most at risk of HIV infection deserve to know about all the options to stay negative, including PrEP and PEP. By signing AB 2640, Governor Brown is helping to promote options that have the potential to change the course of the epidemic in California and significantly reduce the HIV infection rate here.”

Want to know more about PrEP? – Follow this link to search this blog

Want to know more about the the Dutch model which finds PrEP cost saving? – Read this article from our colleagues at NAM http://www.aidsmap.com/Dutch-model-finds-PrEP-for-high-risk-gay-men-is-cost-effective-at-current-prices-and-cost-saving-at-generic-prices/page/3086496/

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Homelessness In Leicester & HIV: Information for Leicester City Council’s Homeless Consultation.

Homelessness in Leicester

Homelessness in Leicester

Leicester City Council is consulting on five proposals to re-configure our homeless services to ensure the most vulnerable receive the support they need.

Around one in three people living with HIV have experienced poverty, leaving the vulnerable to housing problems and homelessness.  HIV is a complex condition, affecting many areas of someone’s life. Understanding how to assess housing needs for someone living with HIV requires a good knowledge of these complexities.

People living with HIV need to keep strictly to their treatment regime which is known as adherence.  Being adherent is not just about taking pills every day, it is about taking them in the right way (for example, with or without food, depending on the medicine) and at the right time. At least 95% adherence to treatment is needed to avoid HIV developing drug resistance. This means that if someone is taking once-daily treatments, they can only miss one dose a month.

The ability to adhere to treatment requires a stable home environment. Good housing is critical to ensure this.  Without this, treatment can fail and people become very unwell and can even die.  It is important to remember that for those not yet on treatment, unsuitable housing can lead to more rapid deterioration of their condition.

So what does this mean for housing and homeless applications?
Many housing organisations still use out of date measures of HIV, for example an AIDS diagnoses to decide housing need.  Others look for symptoms of HIV ill-health, or a low CD4 count.  There is nothing wrong with considering these criteria, but they are simplistic measures and ignore one crucial element – the health of people living with HIV fluctuates and can change suddenly.

The result of only using these simple measures is that people’s true health needs are missed.  Housing offers should carry out a more comprehensive assessment of the needs of people living HIV.  This should include considering the fluctuating health of people living with HIV, mental health issues and the need to comply with the very strict treatment adherence standards essential for treatment to work.

Adherence may be particularly difficult for people are:

  • Homeless or living in insecure accommodation, including bed and breakfasts
  • Living in overcrowded or shared accommodation with little privacy
  • Without access to a private fridge in which to store certain HIV medications
  • Unable to afford food to eat healthy and adequately
  • Isolated from, or having difficulty accessing support services
  • Experience mental health problems.

Homelessness

Homelessness clearly has a detrimental effect on someone living with HIV.  Adhering to treatment becomes extremely difficult when living on the streets or in living in shared or unsuitable accommodation.

Even if a person is currently managing their condition well, becoming homeless will have an enormous impact on their health. For example, they may not be able to take their treatment as directed, may be unable to adequately feed themselves and may lose touch with medical services and go untreated, leading to the development of serious infections that can be life-threatening.

Shared Accommodation

People living with HIV who are placed in accommodation with shared facilities such as kitchens and bathrooms may have serious concerns about other residents finding out about their HIV status. For example, people living with HIV may be reluctant to store their medications in shared fridges and may need immediate access to a bathroom or toilet because of the side effects of treatment (which frequently include diarrhoea).

Funding cuts to Leicester homeless services

The proposed cuts to homeless services in Leicester will have huge impact, not only to those living with HIV, but to other vulnerable people in our city.

The Council in reviewing the homeless strategy is proposing to stop the grant subsidy it currently gives to The Centre Project and Leicestershire Cares but retain the Day Centre at the Dawn Centre which provides support and education opportunities to homeless service users. The Council claims in its proposal that the Centre Project ‘only delivers support programmes to strengthen employment opportunities for those who are homeless. This work can be redirected to the job centres who offer similar opportunities’.

However, the Centre Project provides a safe and accessible service for people to come and get support, prevent loneliness and generally promote wellbeing.  Some people need a lot of support before they can be work ready or be able to sustain their tenancies.

The Housing Scrutiny Commission’s strategy is available here:

https://consultations.leicester.gov.uk/communications/homeless-services-review/user_uploads/monitoring-the-homelessness-strategy.pdf

You can provide your valuable opinion directly with Leicester City Council at their survey site here:

https://consultations.leicester.gov.uk/communications/homeless-services-review

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Paida Mutopo, born with HIV gives birth to a healthy, HIV Negative baby boy.

paida

Paida Mutopo, A woman who was born HIV positive has spoken of her relief after giving birth to a healthy son.

(Story via Daily Mail)

Paida Mutopo, 20, from Rochdale, was told she was HIV-positive when she was just 11 and feared she would never have children for dear of passing it on herself. (Read the story here: https://blog.lass.org.uk/2016/09/27/i-was-born-with-hiv/)

But advances in treatment have mean the amount of the virus in her system is now undetectable – and she can lead a normal, healthy life.  She was also able to take medication to reduce the risk of giving the virus to her children.

Five months ago, she gave birth to her son Kai and was thrilled when tests confirmed he was free of HIV. She is sharing her story as she is keen to teach the world that HIV is no longer a ‘death sentence’.

‘When I found out I was pregnant I was so scared and at the same time I was so excited,’ she said.  ‘When I found out I was HIV positive, I never thought I was going to have a child and that was something I wanted in my life.

‘If he had been positive I would have felt so bad, I would have just blamed myself.’  But she said once she received the letter confirming his clean bill of health she was ‘so happy’.

She added: ‘I don’t think I would have been able to live with myself if I had found out he was HIV positive.’ Advances in HIV medication mean that Paida only has to take three tablets a day.

In the UK, transmission of HIV from mother to child is almost entirely preventable through screening, and careful management during pregnancy.

In addition, appropriate antiretroviral therapy, management of how the baby is delivered and avoiding breastfeeding reduces the risk of transmission.

Doctors believe Paida, originally from Zimbabwe, contracted the condition from her mother Mavis – who had no idea she had the virus until her daughter was diagnosed.

As well as having to deal with the shock of her own diagnosis, Mavis was overwhelmed with feelings of guilt.  She said: ‘It was a huge shock, especially since so many relatives had passed away from HIV in Zimbabwe.

‘It was very difficult and I was constantly asking myself “What should I do? Should I kill myself and Paida?”

‘I passed it on to my daughter, unknowingly, but that sense of guilt, it’s always in you – you know if she’s not well, you’re thinking “it’s because of me”.’

Mavis says she was advised not to tell her daughter straight away, waiting until she was 11 and settled in England to break it to her.

Feeling frightened and isolated, Paida began misbehaving in class and quickly spiralled into depression and fell prey to bullying.  Paida said: ‘My life changed a lot, when I would get to school I could be walking in a corridor full of people and I would just hear someone shout “HIV” or “die”.

‘It was pretty hard because my age group didn’t understand it, and no-one wanted to be near me, they just seen me like I’m disgusting or something.

‘Before that I used to share food and drinks with my friends, but after that, they would rather stay away from me.’  Tired of living a secret life, Paida decided to ‘come out’ as HIV-positive on social media aged 16.

She said: ‘I felt so relieved that I wasn’t hiding anything any more.

‘There was nothing for me to be paranoid about, I could just speak about HIV so openly, that people know about me without anyone saying “have you heard that girl, she’s got HIV”.’

Paida has now set her sights on going to university to study social work to help build a right future for her and Kai.

She also uses social media platforms like Facebook and Snapchat to challenge the stigmatisation of HIV patients, joining the likes of Prince Harry who in July took a HIV test to raise awareness about the condition.

Paida said: ‘I want to one day wake up and know there is no more stigma surrounding HIV and I was the cause of that, for the stigma to go, that is my dream so I hope one day I will achieve it.’

Dr Katherine Ajdukiewicz, consultant in infectious diseases at North Manchester General Hospital, says the stigma attached to HIV is still one of the biggest issues preventing people from getting tested.

Dr Ajdukiewicz said: ‘I think the campaigning that Paida is doing is absolutely fantastic.

‘The life expectancy of someone living with HIV Is now comparable with the rest of the population, which is certainly not what it was when I started working in this field.

‘We’re living in the shadow of the “don’t die of ignorance” era of the mid-eighties and we haven’t gone beyond that yet, so the more individuals like Paida can do to increase awareness the better.’

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‘I was born with HIV’

paida-main

Paida Mutopo, from London, was 11 when she found out she was born with a life-threatening virus. Now 18, she wants others to know it’s not a death sentence…

[Story via Reveal (2015) http://www.reveal.co.uk/real-life-stories/news/a625535/i-was-born-with-hiv.html]

“I’ll never forget the moment my mum told me I had HIV. I was only 11 years old and barely able to comprehend what it was, let alone that my mum had unwittingly passed the virus onto me.

Back then, what I knew of HIV from the TV and the news was related to death and I became convinced I was going to die.  My mum, Mavis, had known for a year but had been too scared to tell me. She’d found out when we were tested for the virus after I started showing symptoms. Suddenly, everything fell into place.

Throughout primary school, I was weak and tired all the time. I’d even fall asleep in lessons. Then, when I was 10, I broke out in painful red rashes and my weight plummeted. I spent months going in and out of hospital as doctors tried to determine my ‘mystery’ illness.

Eventually, I was prescribed medication, which Mum made me take every day, stressing how important it was. I knew something was wrong, but I’d had no idea how serious it was.

At just 11, being told the truth was hard. It was something drug addicts and prostitutes got, not schoolgirls. Mum explained that my dad, who’s from Zimbabwe, had passed it on without her knowing. They’d split before I was born and apart from a few Christmas cards, we’d never had a relationship.

Mum and I moved to Manchester in 2003 after she got a job as a social worker. Incredibly, she’d never been ill, so there’d been no clue what we were living with.

When I spoke to my dad about it, he admitted he’d been aware for years. I was distraught. How could he not have told us? Desperate for answers, I asked him why he hadn’t shared this incredibly important information. But he never replied. That was when I cut him out of my life for good.

By contrast, Mum was drowning in guilt. Even today, she blames herself. But I don’t hold her responsible. She had no idea.  Still, that didn’t stop fear overwhelming me. Each time I went to bed, I was terrified I wouldn’t wake up. I worried I’d lose friends, that people would shun me. Would I be able to have a boyfriend or children?

Mum told me it wasn’t the death sentence it used to be. But I’d seen people ravaged by it and knew the stigma. I told no one.  I missed lots of school because I had to spend up to six weeks in hospital at a time. I felt isolated and depressed. What was the point in trying hard in lessons when I might not make it past high school?

At 14, I confided in one friend. Quickly, rumours rampaged round the school. It felt like my life was over. Bullies said I was going to die. Others wouldn’t touch me. People would come into the restaurant where I worked part-time and shout that I shouldn’t be allowed to work with food. My email inbox was full of nasty comments.

But slowly, as I read up on HIV, I realised Mum was right. Times had changed and people were living with the virus. So, at 16, I decided to ‘come out’. ‘The rumours are true,’ I wrote on Facebook. ‘I’m HIV positive.’ It turned out to be the best thing I ever did. I received so many supportive and positive reactions.

That year, I got my first boyfriend. We already knew each other so I didn’t have to tell him about my condition. We were so young, we didn’t have a sexual relationship.

But a year later, when I got together with my second boyfriend, he panicked that he could catch it from kissing. We went to the hospital, where a nurse explained how it was passed on and he calmed down.  (Read: Way’s you can’t get HIV)

We were told as long as I kept taking the drugs and we used condoms, we’d be fine. Finally, I felt I wasn’t that different. I could live a normal life.

I take three different tablets daily to keep the risk of spreading the virus as low as possible. For now, they’re keeping it at bay and the virus is barely visible in me. I may even be able to have children.

Now I’m studying health and social care and spend most of my time trying to encourage people with HIV to speak out and educate others.

It’s not ‘dirty’ and we need to change how people think about it.”

A mother’s pride

PAIDA’S MUM MAVIS, 48, SAYS:

“When doctors diagnosed Paida with HIV and it turned out I’d passed it on to her, I was utterly shocked. I felt so guilty, both as a woman and a mother. Your instinct is to look after your baby but I’d given mine a potentially deadly virus.

“Thankfully, Paida doesn’t let her diagnosis get her down and watching her grow up into the young woman she is now has been so rewarding. I’m amazed by her strength every day.

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Lorry themed condoms tackle India HIV Transmission & M1 Healthy Hub Roadshow

In India, it is estimated two million lorry drivers regularly use sex workers – but barely 10% of truckers are using condoms. – Story via BBC News

Health officials say there is a strong correlation between HIV infections and the routes used by truckers.

To help raise awareness, lorry-themed condoms are being sold. The colourful packaging of the Dipper brand has been designed to replicate the bright designs of India’s trucks, and 45,000 packets were sold out in just a few days.

This project is not unsimilar to the Healthy Hub Roadshow, an initiative set up by LASS CEO Jenny Hand and Holistic Practitioner Jacqui Tillyard together with  six HIV and Sexual Health Organisations located along the M1 corridor between Luton and Nottingham.

Healthy Hub Roadshow Staff and Volunteers

Healthy Hub Roadshow Staff and Volunteers (© Robson:2016)

The main aim was to raise awareness for Safer Sex, HIV testing, AIDS prevention and condom distribution.  The Roadshow also offered a range of other related health tests and information including diabetes blood sugar level test, BMI, cholesterol and Blood pressure tests to encourage healthier lifestyles.

The roadshow is now closed, however you can find valuable information online at http://healthyhubroadshow.co.uk 

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The NHS consultation for #PrEP ENDS TOMORROW! Make sure your voice is heard!

Prep Infographic

The NHS public consultation on a proposed clinical consultation commissioning policy on Pre-Exposure Prophylaxis (PrEP) for HIV ends tomorrow (Friday, 23rd September)

This consultation is necessary in order to make PrEP available to people who are at risk of becoming HIV positive.  Multiple studies around the world have shown PrEP to be highly effective in reducing the risk of contracting HIV. The results of the PrOUD trial in England, released in 2015, prove that PrEP works and that concerns about it not working in a real world setting, were unfounded. Read more about the trial here: http://www.proud.mrc.ac.uk/

PrEP has been approved by the World Health Organisation and it’s already available for those deemed at risk of HIV in the United States, Canada, France and Israel.  PrEP can reduce people’s chances of contracting HIV the virus if taken daily.

If you would like more information on both PrEP trials (PROUD and IPERGAY) visit Poz.com for a more detailed look (https://prodlb.poz.com/article/PrEP-CROI-26978-7841)

There are arguments for and against providing PrEP for free on the NHS.  That it could encourage risky sexual behaviour but it’s not always about risky behaviour. You, and you alone are responsible for your own sexual health.  If your sexual partner(s) dislike using condoms, you can stay protected by taking PrEP.  This is about taking ownership of your sexual health.  PrEP is another tool to sexual health which will reduce HIV nationally and help save the NHS vital money it needs for other services.

The following gives a breakdown and suggests the NHS could actually save money on HIV treatments if they were to adopt PrEP.

  • PrEP cost per year: (Media figure) £10m -£20m. Assume higher figure of £20m per year.
  • New HIV diagnoses in the UK per year: Approx 4000 people.
  • Cost over average lifespan estimated at £365,000 for treatment. (Assume average lifespan of 36 years for ease of calculation as some people are diagnosed in their teens, some in the mid 60’s) making an assumed cost of treatment per person per year at approximately £10,000.
  • New HIV diagnoses: Extra cost, year on year of £40m
  • Assume PrEP rolled out on 1st January 2017 and 50% is effective (i.e. that it reduces new HIV diagnoses in the UK by half. Likely to be more effective than this but let’s play out a worst case scenario).
  • In 2017, 2000 new cases of HIV are prevented saving £20m. This is a year on year saving.  PrEP however in an unchanging cost.  In 2018, 2000 new cases of HIV are prevented, saving £20m and the cost of treating the prevented 2017 cases in 2018 is also saved making a total of £40m saved this year.
  • It’s easy to see how this goes, although likely to be an upper limit to savings year on year after a few years, it won’t keep going up indefinitely.
  • PrEP does not merely pay for itself after one year but actively makes savings to the NHS budget in expensive HIV treatments, allowing other drugs to be funded.
  • This calculation assumes worst case figures here, the actual savings are likely to be higher.
  • In 2018 Gilead’s patent on Truvada (the PrEP treatment) may run out. If and when it does, further savings can be made.

Above breakdown via @THTorguk

We have been responding to the challenges of HIV for 30 years.  HIV will not go away unless we invest in, and try out proven methods to reduce the risk of HIV infection.  PrEP has been proven to work and we urge you, as someone who wants to see the end of HIV to respond to the consultation and get your voice heard.  If we work together, we could eradicate HIV in our lifetimes.

The NHS consultation is open until Friday, 23 September.  Many people have felt powerless in the fight to make PrEP available on the NHS, and now you have the power to make it so.

Visit the follow link for further detailed information and to participate in the survey.

https://www.engage.england.nhs.uk/consultation/specialised-services

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HIV-positive Magic Johnson locked himself in bathroom to reveal diagnosis to lovers

Magic and Cookie Johnson recently celebrated 25 years of marriage (Getty Images)

Magic and Cookie Johnson recently celebrated 25 years of marriage (Getty Images)

Dealing with the magnitude of his HIV diagnosis was never going to be an easy task, but Magic Johnson’s wife has recalled how the former basketball star went into survival mode when having to inform his lovers that he had the disease. In her new memoir, Cookie Johnson reveals that the Lakers point guard ‘locked himself in a room and called the long list of women with whom he’d been intimate.’

The designer, and spouse of the NBA Hall of Famer, writes of how her husband’s health status rocked the foundation of her marriage in her book Believing In Magic, which is out later this month.

“In just one moment our world, this perfect union we’d fought so hard and so long to have was obliterated.”

And just like the scores of women who were forced to endure the 12-day wait to find out their fate, Cookie says she felt like she was living in her ‘own personal hell’.

Although human immunodeficiency virus (HIV) can cause the immune system to fail, which leads to life-threatening infections and cancers to thrive – ie. acquired immune deficiency syndrome (Aids) – at the time, many believed they were the same thing.

“Every morning I would wake up in a panic, worried that I too might be HIV positive and die. Or worse, that my baby would be sick and not make it,” she explains in excerpts serialised by the Daily Mail. “The stress coursed through my veins like a poison, occupying practically every moment of my day.”

The book delves into the impact on his family by his decision to go public with his HIV diagnosis, and to quit the NBA in 1991. Cookie was pregnant with their first child, EJ, at the time. In the weeks leading up to the conference in 1991, the Lakers had informed press that he was suffering from flu-like symptoms and jet lag.

(Want to know more about Magic’s ‘Announcement’? Click here)

Despite retiring from the game, he returned to the game 1992 NBA All-Star Game, where he took home the MVP award, then played 32 games in 1995-96.

After enduring speculation that he was gay or bisexual, the 56-year-old former sportsman he has been working tirelessly with the Magic Johnson Foundation to eradicate the stigma that surrounds the disease.

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