Monthly Archives: January 2017

Blood on the Dance Floor – From Heritage to Health.

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Jacob Boehme has put his experiences of being a gay, indigenous, HIV-positive man into a solo show Image credit Bryony Jackson

Jacob Boehme remembers when he knew something was seriously wrong.

It was 1998 and Boehme had had a nagging cold for months. An Aboriginal elder “sat me in the middle of her legs and started to sing over me”, he recalls. Performing a healing ceremony, she wiped the sweat from his armpits and smothered it on his head and neck. Eventually, she muttered: “Ahh, you need to go to a Western doctor. Everything is red. I cannot help you.”

Boehme was diagnosed with HIV. In an era when antiretroviral treatments were in their infancy, it was the first news of its kind his doctor had delivered. “He was choked up and almost crying,” Boehme says. “I had to console him.”

Now 43, Boehme is not only still alive, he has put his experiences of being a gay, indigenous, HIV-positive man into a solo show. Blood on the Dance Floor, which just played at the Sydney Festival, explores what our understanding of blood means, from heritage to health.

Better portrayals

Combining storytelling and dance, the work includes a skit on being a camp “gay elder” in drag, discussion of stigma around HIV in the gay community (particularly when trying to find a partner), and moments when Boehme is framed, moving, against streams of blood, with bubbling red cells projected against the wall.

Most important, he says, is rewriting the conversation on what being HIV-positive means.

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Boehme’s show features a projection representing blood cells Image credit Bryony Jackson

“Anything shown in the media or entertainment, it’s always been some kind of memorialisation of the Aids crisis back in the ’80s. Everybody dies,” he elaborates.

“That’s not relevant to me and to many of the other men and women that I know living with HIV. There isn’t an image of a healthy functioning person with employment and prospects – you don’t see that portrayed anywhere.”

Another key step, he says, is broadening our understanding of who suffers from the virus. According to the University of New South Wales, notification rates (the reporting of newly-diagnosed cases) of indigenous men with HIV doubled in the past five years from 6.2 per 100,000 to 12.4 per 100,000. In contrast, non-indigenous notification rates fell by 12%, said the report by the university’s Kirby Institute.

Despite this, education campaigns largely remain directed towards white men, says Boehme.

“Tell me the last time you saw an HIV education campaign with someone from the Aboriginal, Asian or African identity on those posters? You just see gay white men in their underwear,” he points out.

“It makes quite a lot of people feel completely dismissed and it’s not just the gay male community – it’s heterosexual males living with HIV, kids living with HIV too. It’s never been a gay white man’s disease.”

Stigma in communities

Born in Melbourne to a non-indigenous mother and father from the Narungga and Kaurna peoples of South Australia, Boehme knew he was gay from the age of four.

The dancer – who is the incoming creative director of the Melbourne Indigenous Arts Festival – has always had the support of his family.

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Boehme uses blood to explore themes of heritage and health Image credit Bryony Jackson

Others are often not as lucky. In some Aboriginal communities, stigma towards homosexuality remains, insists Boehme.

“When you go into communities that are very much still holding up the values of the old mission days, that’s when you get a problem, through those Christian and very Victorian ideas of sex, gender and sexuality,” he says.

Blood on the Dance Floor was dreamed up after rehearsals in a warehouse. Boehme was “obsessed about my blood, about the cleanliness of my blood”. After nicking his heel on an exposed nail, “I sat back down and realised I left a trail of blood on the dance floor. And [my friend] went ‘ah, there’s your title’.”

“Blood, it’s a life force that connects us, it can be used to define us and can be used to discriminate, to separate, or to actually unite,” Boehme says.

Honouring a friend

When writing the show, the artist kept a small crystal decanter of his own blood on his desk. “Suddenly I was connected to my dad, then my grandmother, then a whole line of our ancestors that I never met and through that, those voices started to then speak through me. In that blood, in those codes, there are thousands of generations sitting in that little decanter.”

Boehme says blood connects him to his past and, above all, to his illness. But it also releases him. “Regardless of what features or skin colour we have, really our blood is the thing that ties us together,” he says.

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The artist is set to begin as creative director of the Melbourne Indigenous Arts Festival Image credit Bryony Jackson

A particularly raw moment in Blood on the Dance Floor touches on the suicide of Boehme’s friend in 1996 after discovering he was HIV-positive. It was a time when “there was still this spectre hanging around like it was a death sentence. There was a lot more shame around HIV and he just couldn’t cope.”

Boehme still remembers when he found out. His friend’s boyfriend, drunk, announced at a dinner party that his partner was positive. “I looked at him. And he said, ‘I don’t want that look. I don’t want anyone’s pity. Don’t you dare give me that look.'”

Just two years later – as antiretroviral drugs were being rolled out to the larger population – Boehme received his own diagnosis. In Australia in the 1990s around 1,000 people died each year of Aids. Today, deaths are so low they are not recorded.

“That’s exactly why I insisted we honour him,” Boehme says of his friend. “He didn’t get a chance.”

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Appointment of Chief Executive

LASS was recognised as one of the best health charities in the Country by the Kings Fund with GSK, gaining an Impact Award in 2013.  We are an independent, non-profit organisation providing information, advice, support and advocacy services for people who are living with or affected by HIV.  A large part of our work is also raising awareness about HIV, providing training, workshops, free confidential HIV testing in community settings. We work in partnership with other agencies to challenge stigma and discrimination.    The services we provide aim to improve people’s health and well-being, ultimately helping them to live life to its fullest and contribute to the prosperity of their communities.

LASS now seeks to appoint an exceptional Chief Executive to continue the successful delivery of our services whilst further developing the charity and its social enterprise ‘Well for Living’.  The Chief Executive will be expected to provide both strategic and operational leadership of both our charity and our social enterprise, working effectively with funders, local government and leading a passionate, dynamic team of staff and volunteers.

We are looking for a successful visionary leader who can combine excellent strategic and functional delivery with a natural ability to empathise and work directly with vulnerable adults.  With proven income generation and business development experience, your leadership will ensure LASS and Well for Living’s services are sustainable and of the highest quality, and your inspirational style and personal credibility will help to leverage our profile, networks and connections even further.

Critical to your success will be a genuine passion for equality and making a difference to the wider community as well as a commitment to developing a long standing charity which aims to be a leader in its field.

To learn more about this unique opportunity, download the Job Description with Person Specification and application form  and  return by post or email as specified on the application form.

  • Closing date for applications: 24th February 2017
  • Interviews and presentations:  First stage 9th or 10th March 2017.
  • Final stage: Saturday 18 March and Friday 24th March.

Tinder releases health & safety section to their app after STD rise from hook-up culture

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Casual hook-ups are nothing new and neither are STDs. Despite our over-exposure to sex, many young people are still under-educated about the prevalence of STDs and the importance of taking preventative steps.

In fact, there is an ever-growing complacency towards STDs, including HIV, thanks to an increasingly casual sexual culture partly possible through apps like Tinder. Twenty-somethings seem to be the poster generation for unprotected sex and have even been called the ‘pull out generation.’

The stats are frightening. Countries around the world have reported a steady rise of STD cases since 2012. Chlamydia, gonorrhoea and syphilis have all seen major spikes, and people aged 15-24 make up two thirds of new cases. In 2012, major North American urban centres saw the rate of HIV increase for the first time in over a decade, and just in the past year, Florida saw its rate of new HIV diagnoses go up by 23 percent.

Casual Sex Encounters? – Read this – it’s not the normal sexual health yada yada..

 

 

Perhaps not coincidentally, 2012 was also the year that Tinder came out. The popular dating app has revolutionized hook-up culture, making it easier than ever to meet people with the sole purpose of having sex. The app also made it easier than ever to catch an STD.

Last year, the AIDS Health Foundation in Los Angeles launched an ad campaign linking the rise of STDs to the dating app. The foundation argued that the dating app has completely changed the modern sexual landscape and has made “casual sex as easily available as ordering a pizza.” Their campaign reminded people that even though sexual encounters have become increasingly brief and frequent, STDs have long-lasting effects and should be taken seriously.

In addition to Tinder, the AIDS Healthcare Foundation argues that young people have had the good fortune to not grow up in a world where HIV is a death sentence thanks to the development of effective antiretroviral drugs. But that in turn has developed a false sense of security and a detachment from HIV’s threat. In general, Americans are simply not as afraid of HIV, viewing it as a ‘third-world disease’ and are vastly under-educated on the topic.

That attitude has led to AIDS falling off the media radar. Tellingly, education programs have lost funding. You rarely see advertisements promoting safe sex, and many people have reverted to old, reckless sexual behaviour. Younger people are particularly affected by this phenomenon since they didn’t live through the original AIDS epidemic.

The AIDS Healthcare Foundation argues that the development of effective antiretroviral drugs has developed a false sense of security against STDs

Tinder responded to the AHF campaign with a cease and desist letter, arguing that the sexual health of a person in any relationship, formed on Tinder or otherwise, is in the hands of that person and not the app itself. But it has shown support for the initiative by creating a new section on the app that provides sexual health information as well as a locator for STD-testing facilities.

Hopefully young Tinder users take the section as a wake up call to the realities of STDs and change their ways for the better. Remember kids: no glove no love.

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Jenny Hand – LASS CEO due to retire in June 2017.

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Jenny Hand LASS CEO since 2008

Jenny Hand has been the CEO at LASS, Leicestershire’s HIV specialist charity for almost 10 years and will retire in June this year . With Jenny at the helm, LASS has moved forward with the changes in HIV medication and support, advice, information, prevention and awareness needs. In 2013 LASS was recognised best 10 health charities in the country with a £30,000 Impact Award from GSK with the Kings Fund. LASS continues to benefit from being a member of the Impact Award alumni attending Kings Fund training with other Award winners and taking part in research and reviews.

LASS was among the first charities in the Country to introduce free instant result HIV community testing, demonstrating huge savings for the health service through enabling people to know their HIV status and be referred for appropriate support and medical treatment through a fast track arrangement.

LASS also set up a social enterprise – trading as Well for Living and through this has worked in partnership with other small local HIV services in the region to provide enhanced awareness and prevention services. Most recently the regional partnership has delivered a public health England funded innovation project promoting HIV testing in the workplace. A full report on this pioneering work is due to be released this spring. Jenny says ‘the findings are very encouraging not only for HIV but for other workplace health awareness developments.’

Patrick Bowe, Chair of the trustees at LASS, is immensely proud of the work achieved at LASS over the past 10 years and while he would have hoped Jenny might stay for a few more years sees this as an opportunity for LASS to recruit a new CEO  who will be able to lead both LASS and Well for Living into the future.  ‘LASS will enter its 30th year in June and there is still a huge amount of work to do before people living with HIV can live without stigma and discrimination and to ensure late diagnosis is prevented. The CEO’s role will be critical in taking forward the organisation.’ The recruitment process will start on Monday, 30th January 2017.

Jenny is looking forward to continuing some part time work focussing on partnerships and in supporting organisations through bid writing.  She will have more time with her family and for holidays and travel.  She enjoys playing cello in local orchestras, walking, and playing bridge.  You may even find her volunteering in the local community when she retires.

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Reflections from the HIV & Hepatitis department at the World Health Organisation

A few reflections from Dr Gottfried Hirnschall, Director – HIV & Hepatitis department for the World Health Organisation. During 2016, the WHO HIV Department and Global Hepatitis Programme, broke new grounds and supported major achievements in countries.

We saw WHO’s Member States adopt the first-ever global strategy to eliminate viral hepatitis by 2030 – an expression of major commitment by all countries. We also announced many other “firsts” in hepatitis: the first million people with HCV receiving treatment (as stated in our first treatment access report), the first testing policy brief, and the first surveillance guide – all pioneering actions to enable countries to move forward as quickly as possible; and the first 35 countries reporting to have established national hepatitis action plans as well.

In HIV, the world achieved a new milestone in treatment scale-up: more than 18 million persons on ART, amounting to about 50% of people with HIV. Moreover, countries have shown very encouraging uptake of HIV “treat all” policies. We have trained more than 700 persons in the use of our new guidelines (through regional capacity building events). We increasingly focused on “test all” with the launch of ground-breaking HIV self-testing guidance on World AIDS Day. Several more countries were also validated for having achieved the elimination of mother-to-child HIV transmission.

Read more here: http://www.who.int/hiv/mediacentre/news/hiv-hep-end-2016-video/en/

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Young? Living with HIV? Want your voice heard?

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In 2009, the United Kingdom was one of the first countries to implement the rollout of the People Living with HIV Stigma Index. This generated 5 reports, which can be found here. Findings were based on peer interviews with community members. Building on the success of the 2009 rollout, the 2015 Stigma Survey continued to engage with community while also gaining NHS Ethics approval, thus creating a more academically robust dataset.

Stigma Survey UK 2015

The adult survey was developed in collaboration with community members from a broad range of organisations or institutions, listed below. These people have markedly different backgrounds and their collective knowledge and experience, ensure both a high level of expertise as well as comprehensive representation among the key population groups that are affected by HIV.

The advisory group met regularly throughout the preparation of the survey, the implementation of the study and subsequent analysis of data as well as the dissemination of findings.

The members of the advisory group are affiliated with: FPA, Public Health England (PHE), National AIDS Trust (NAT), HIV Scotland, NAZ Project London, Leicester AIDS Support Services (LASS), All Party Parliamentary Group on HIV and AIDS (APPG), APPG for Sexual Health Northern Ireland, Scottish Parliament, Chelsea and Westminster Hospital, Homerton University Hospital, British HIV Association (BHIVA) Nurses HIV Association (NHIVNA), Children’s HIV Association (CHIVA), International AIDS Society (IAS), Positively UK, African Health Policy Network (AHPN) , Clinic Q, Terrence Higgins Trust (THT), University of Glasgow.

Young People’s Stigma Survey UK

This survey was developed in collaboration with young people living with HIV from across the country. Experts in the field who research or work directly with young people living with HIV were also involved. The advisory group met regularly throughout the preparation of the survey and will continue to do so throughout the implementation of the study and subsequent analysis of data as well as the dissemination of findings.

If you are HIV positive and aged between 15 to 24 years, You are invited to share your unique experience and contribute to the knowledge around your rights and how stigma and discrimination affect the lives of young people living with HIV.

Please access the survery by following this link: https://snapsurvey.phe.org.uk/snapwebhost/s.asp?k=147401600809

 

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FATHERS: Sex & Politics if AIDS Never Happened

Imagine a world where Robert Mapplethorpe is still alive!

Imagine a world where Robert Mapplethorpe is still alive!

“What if Vito Russo ran for President? What if Mapplethorpe got into a Twitter feud with a Kardashian? What would David Wojnarowicz do about the gay executions in the Middle East? “

These are the questions artist and filmmaker Leo Herrera hopes to tackle “with integrity, humor and history” in his new project Fathers which takes place in an alternate universe where HIV and AIDS never existed.  In this reality, Leo Herrera imagine an alternative universe where our queer artists and activists had lived. Who would they be today? What would our world be like? Would we have a gay president? These are the questions Fathers will explore in a film that can only be described as “Cruising meets Black Mirror meets Beyonce’s Lemonade.”

To research the political storylines for Fathers, Herrera worked on a New York art collective with Act-Up legend Avram Finkelstein (of Silence=Death campaign), and then as a campaign manager to successfully elect an LGBT activist to public office in San Francisco.  Herrera plans to film it in San Francisco, New Orleans and New York, in worlds where our queer heroes, artists and activists lived.

At the centrepiece of Fathers is an art project which imagines where key cultural figures lost to AIDS would be today: In a feat of digital wizardry, Herrera uses age-progression (a forensic technique used by police to find missing children) to take iconic portraits of Robert Mapplethorpe, Keith Haring, David Wojnarowicz, Vito Russo and Sylvester, and morphs them into happy seniors in a joyful Dorian Grey reversal of their fate. Combined with imagination, input from those closest to these figures and historical research, Herrera immerses us in exploring possibilities and potential outcomes if the AIDS crisis hadn’t wiped out an entire generation.

“The tools we now have to combat HIV will give us the privilege of keeping our queer artists, but the injustices of AIDS should always live in our collective memory and more importantly in our imagination. It’s the only way that we can find creative cures to the damage it caused to our culture and harness the power it gave our community to join against political forces that threatened our lives, now more than ever.”  – Leo Herrera

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#UnchartedTerritory: A report into the first generation growing older with HIV

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‘I mean I have nothing, the money has gone. That’s all gone. But I mean we’d spend our holidays….having fun thinking we were going to just spend up until we died.’

The Terrence Higgins Trust has today launched a new report – Uncharted Territory – which looks at the first generation of people to grow older with HIV in the UK.  The full report and executive summary can be accessed here.

Produced with peer researchers – individuals aged 50 and over living with HIV in the UK – the report shines a light on the needs and experiences of people living with HIV aged 50+. There is no single experience for older people living with HIV and the report makes clear that there is a diversity of needs and experience, from those individuals who need very little support through to those who have more complex needs.

‘I think I’ve just reached a point in my life now where I’m settled in myself, what will be will be … you expect to get ill when you get old so that doesn’t really bother me. You stop caring what people think I suppose.’

The fact that the effectiveness of modern treatment means people living with HIV can expect to live a full life is to be celebrated, however this success brings with it a set of new challenges:

Wealth

  • 58% of people living with HIV aged 50+ were defined as living on or below the poverty line – double the levels of poverty seen in the general population.
  • Over a third of individuals were solely reliant on welfare benefits to live.
  • 84% of respondents were concerned about future financial difficulties

Health

  • 22% of people living with HIV aged 50+ rated their current wellbeing as ‘bad’ or ‘very bad’.
  • People living with HIV aged 50 and over have on average three times as many long term health conditions as the general population.
  • 84% of people living with HIV aged 50 and over were concerned about how they will manage multiple health conditions in the future.

Social Care

  • People living with HIV aged 50+ have faced discrimination from social care professionals due to their HIV status.
  • 82% of over 50s living with HIV were concerned about whether they would be able to access adequate social care in the future.
  • 88% had not made financial plans to fund future care needs.

Happiness

  • A third were socially isolated and 82% experienced moderate to high levels of loneliness.

Over 50s are the fastest growing group of people living with HIV – 1,018 individuals aged 50 and over were diagnosed with HIV in the UK in 2015 and now over one third of people living with HIV in the UK are over 50. This group, the first generation growing older with HIV, are entering uncharted territory.

The Terrence Higgins Trust will be sharing stories, stats and asking supporters to stand with those 50 and over living with HIV on social media as part of the drive to amplify the voices of older people living with HIV. Please do share and spread the word about #UnchartedTerritory.

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New HIV prevention treatment can only work if perception improves – DMU experts

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A De Montfort University Leicester (DMU) professor and his PhD student have urged the medical profession and media to change the way in which a new HIV prevention treatment is represented if they want it to work.

Professor Rusi Jaspal carried out the first study to find out what men in the UK felt about PrEP – a new HIV prevention treatment said to reduce the risk of infection by 86% if taken daily.

He found that men who would benefit most from taking PrEP were being put off by its association with “high risk” people – as they did not want to place themselves in this category.

Professor Rusi Jaspal

Professor Rusi Jaspal

The article, published in Cogent Medicine, illustrates how misconceptions and fear of social stigma is hindering the fight against HIV/AIDS in the UK.

Prof Jaspal called on the medical profession and media to do more to improve perceptions and understandings of the potentially life-saving drug.

He said: “The bottom line is that PrEP works. If we are serious about wanting to prevent HIV infections, we need to roll out PrEP to those at highest risk of infection. This needs to be coupled with awareness-raising and stigma reduction. Many people misunderstand PrEP and believe that it’s only for  ‘promiscuous people’. This is misleading. Our research clearly shows that the biggest barrier to accessing PrEP is the stigma that often underpins it. We must challenge this.”

Men who have sex with men (MSM) are the group most affected by HIV in the UK. Around 45,000 MSM were living with HIV in the UK in 2014.

Pre-exposure prophylaxis (PrEP) is a novel HIV prevention option which has been available in America since 2012 and is in clinical trials in the UK. Prof Jaspal’s study involved in-depth qualitative individual and focus group interviews with MSM, comprising HIV-positive and HIV-negative individuals. The interviewees were asked about their views on PrEP in terms of their knowledge of the treatment and their feelings towards it.

They found that many were unconvinced by its efficacy as a method of protection. Some said they would not use condoms consistently while taking PrEP, which is recommended given that PrEP does not provide protection against other sexually transmitted infections (STIs).

Many people said they would feel stigmatised at the idea of being “high risk” by taking PrEP. It also highlighted a general lack of understanding about what constituted high-risk activities.

One HIV-negative participant said he thought PrEP would not benefit him because he did not perceive himself as “high-risk”, despite reporting multiple condomless sexual encounters, because he was not “Someone who is out at chemsex parties every weekend.”

Other participants made reference to the stigmatising label “Truvada Whore”, namely someone who engages in frequent reckless sexual behaviour because they believe they are made safer by taking PrEP. The authors said this reflected negative press reporting of the treatment, leading ultimately to ‘individuals perceiving the treatment as a potentially viable HIV prevention tool at a population level, but unsuitable for themselves personally.

The study’s co-author Christos Daramilas, a PhD researcher in sexual health psychology said: “PrEP would benefit various groups in society, not just MSM. PrEP could also facilitate what we call ‘serodiscordant relationships’, that is, relationships between people who do not have the same HIV status, because it provides both physical and psychological protection.”

The authors also argued that perceptions of PrEP would only change if healthcare professionals and the media altered their approach to representing the treatment. They said it would be more effective to present PrEP as a “further level of protection” against HIV, in addition to condoms and other prevention strategies.

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Successful antibody trial in HIV individuals

Collaborative effort between the Laboratory of Experimental Immunology (Prof Florian Klein, on the right), Division of Infectious Diseases (Prof Gerd Fätkenheuer), Infectious Disease Outpatient Clinic (PD Dr Clara Lehmann) and external partners. Image Credit Uniklinik Köln

Collaborative effort between the Laboratory of Experimental Immunology (Prof Florian Klein, on the right), Division of Infectious Diseases (Prof Gerd Fätkenheuer), Infectious Disease Outpatient Clinic (PD Dr Clara Lehmann) and external partners. Image Credit Uniklinik Köln

A research team led by investigators of the Rockefeller University in New York and Prof Florian Klein, University Hospital Cologne and German Center for Infection Research (DZIF), has tested a new HIV neutralising antibody, called 10-1074, in humans. The results of the trial have just been published in Nature Medicine.

Over the last years, a new generation of HIV neutralizing antibodies was identified. “These antibodies are highly potent and are able to effectively neutralize a large number of different HIV strains. Therefore, they play an important role in the quest for and development of an HIV vaccine,” explains Prof Klein. Additionally, in close collaboration with the Division of Infectious Diseases at the University Hospital Cologne (Prof Gerd Fätkenheuer) and scientists of the Rockefeller University in New York, Prof Klein’s research group is investigating whether broadly neutralising antibodies can be used to treat HIV infection.

The just published trial investigates this approach. The broadly neutralizing antibody 10-1074 targets a specific structure (V3 loop) on the HIV envelope protein. In the study, the investigators show that the antibody was well tolerated and demonstrated favourable pharmacokinetic properties. Additionally, the antibody showed high antiviral activity in the participants with HIV infection. Furthermore, the team was able to specifically investigate the development of resistant HIV variants. “We performed a comprehensive HIV sequence analysis to investigate the dynamics and mechanisms HIV uses to escape the selection pressure by the antibody,” says Dr Henning Gruell, one of the first authors of the current publication.

“This trial was only possible because of the intensive collaboration with the Rockefeller University and many other clinical and scientific partners,” says Prof Klein, principal investigator in Germany and co-last author of the study. The scientists are planning further trials to investigate an antibody-mediated treatment approach in patients with HIV infection. Further trials have already been scheduled for spring.

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