Miracle of Maurice Greenham who was predicted to die 30 years ago – but today is in good health

Victims: Maurice Greenham at 72 (left) and in ’84 before diagnosis (bottom right), plus Rock Hudson

When Maurice Greenham became one of Britain’s first HIV patients he was told that he’d probably be dead within six months.

Thirty years later – despite developing AIDS and getting a second death sentence – he’s in excellent health and still going strong at the age of 72.

Maurice was diagnosed in July 1984, just three months after scientists discovered the killer virus. “I was devastated,” he said. “It made me so angry. I thought ‘why me?’”  He had just returned from a trip to America with his then-boyfriend.

Feeling poorly, he went to a clinic. Having recently finished a ­marathon in under four hours, he didn’t imagine anything was seriously wrong.

HIV tests had only just become available but while his boyfriend’s came back negative, Maurice, then 42, was horrified to learn he’d contracted the virus from a previous partner.  He said: “They said I had six months to live, possibly more. But no one knew what ‘more’ meant.

“At the time I was in love, I thought I was invincible. I’d just got my dream job as a stage manager at my local theatre and I thought it was all going to be taken away from me.”

This week is the 30th ­anniversary of the virus’s discovery. To date, over 130,000 people have been diagnosed with HIV in the UK. Of these, over 27,000 have developed AIDS and more than 20,000 have died.

But in the early days, before advances in treatment, death was seen as almost inevitable. Maurice recalls: “We’d seen so many people around us dying. When the film star Rock Hudson died in 1985 I thought that would be me.”

Universal Pictorial PressActor Rock Hudson

Tragic: Actor Hudson

 And life, while precious, wasn’t easy for an HIV patient then. Maurice, who’d previously worked as a teacher, had hoped he was moving into an industry where his sexuality would be accepted.

But fear of AIDS meant people living with HIV found themselves treated with contempt and revulsion. So Maurice, of Stoke-on-Trent, kept his diagnosis secret from all but his closest friends.

“It was horrible,” he says. “People would refuse to work with HIV-sufferers, they didn’t want to touch them or even talk to them.”

And although his family knew he was gay, he couldn’t bear to reveal his illness to his mum Ada. For the next 10 years he had no ­symptoms.

But in 1994 his health took a turn for the worse. “The virus had got into my brain and was causing dementia,” he explains.  He was admitted to hospital and diagnosed with AIDS, the more severe stage of the disease.

Then, for the second time, he was told he had six months left to live. “I’d kept it a secret for so long and I thought, well, it’s all going to come out now,” he said.

He was put on a combination of drugs to slow down the disease but believed the end was close.  “It was terrifying. My mum had already lost one son – my brother Derrick – to pneumonia when we were younger. I couldn’t stand putting her through it again.”

The six-month point came and went but the fear and pain did not. Maurice lived the next 18 months in agony as the side-effects of the drugs ravaged his body.

In 1996 he blew a load of cash on what he calls his ‘Farewell Tour’ of Spain. “There’s nothing like the threat of imminent death to focus the mind,” he says.  “I started to work on my bucket list.”

But to everyone’s amazement, he started to get better. Three decades later his body is still holding the virus at bay.

Although technically his AIDS diagnosis still stands, Maurice reckons he’s in better health than many of his peers.  “Back in the 90s I was taking a suitcase-load of drugs every day. Now I just take two pills a day.”

Maurice plays the organ in his church and writes for ­Staffordshire Buddies, an HIV charity that helped him through his illness.  “If you’d asked me 30 years ago, I’d never have believed I’d still be here, but here I am,” he said.

Story via the Mirror

 

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We’re Recruiting! Vacancy: Well for Living Manager

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Well-for-Living-logo-croppe

  • Job Title: Well for Living Manager
  • Reports to: Chief Executive Officer
  • Hours: 37 Per Week (Fixed Term until the end of May 2015 in the first instance)
  • Salary: £23,215

Well for Living, the Social Enterprise for LASS (Leicestershire AIDS Support Services) is recruiting for a Manager.  Well for Living, is a community support agency which offers a choice of personal support services to individuals.

Our clients choose Well for Living to help support domestic tasks such as cleaning, laundry or gardening to social needs like outings and trips.  Well for Living also engages in projects to maximize improvements in human and environmental well-being, we provide community support services providing catering, training or consultancy services to the wider community.

Our clients choose Well for Living to help support domestic tasks such as cleaning, laundry or gardening to social needs like outings and trips.  Well for Living also engages in projects to maximize improvements in human and environmental well-being, we provide community support services providing catering, training or consultancy services to the wider community.  

The Well for Living manager will lead and manage Well for Living (LASS Social Enterprise Ltd) in the delivery of a range of income generating wellbeing services and opportunities, and to ensure these are compliant with all legislative and quality requirements and in keeping with the 3 main delivery areas in our strategic plan – personal support, community support and product sales.

The successful candidate will be expected to develop and ensure delivery a range of high quality personal support services to people in their homes including marketing and promotion, assessment of new clients and allocation of case work, monitoring, quality assurance, and liaison with finance for invoicing.

Additionally, the role will manage the delivery of awareness raising events and training for sexual health and HIV, the LASS café and room hire services as contracted by, and in liaison with LASS managers. This will include management of sessional and part time staff, booking and allocation of resources, budget management, promotion and development of services, quality assurance.

The ideal candidate will have education or training in Business Management, Customer Care, Education, Training, or Health and Social Care level 3 or equivalent.  Excellent project planning skills and experience in providing education or training, care or support services.

Reporting to the Chief Executive Officer, the successful candidate will be a self-starter, competent with Microsoft Office packages and will report on feedback and outcome delivery on a regular basis.

To apply for this post, please download the job description and application form, complete them and return to tom@lass.org.uk or post to:

Tom Robson
Well for Living
53 Regent Road
Leicester
LE1 6YF

Deadline for applications is Tuesday, 29th April 2014 at 12:00 noon.
Interviews will be held on Friday, 2nd May 2014.

 

 

 

Choice Unlimited

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Choice Unlimited is a UK wide road show on independent living and the first of its kind nationally. Aimed at disabled people, older people and carers, Choice Unlimited showcases the diversity of information, services, products, ideas and innovation that is available to support independent living all under one roof.

Choice Unlimited is a unique event led by disabled people to empower disabled people and benefits everyone involved:

Disabled People enjoy an exciting event to learn about the services available to them on their doorstep to support them to live independent lives.

Organisations enjoy the opportunity to showcase their wares and increase awareness about their services to an ever increasingly powerful customer base.

Professionals enjoy the opportunity to learn about the diversity of services available so they are better able to support their disabled clients.

LASS26White           Well-for-Living-logo-croppe

LASS & Well for Living will also be attending, showcasing a variety of support services which our organisations offer.  It’s a good chance to meet some of our staff in person and chat, one on one with us to provide feedback and for us to meet some new people who may benefit from our services.  Entry is free, we hope to see you there!

Cookery Demonstration

Tomato-and-Red-Lentil-Soup

Tomorrow, (Tuesday 8th April) we’re providing a simple cookery lesson for volunteers and members of LASS.

Our visiting dietician Jen and our Cafe coordinator Travis will be on hand to show how to cook a nutritional and healthy red lentil and tomato soup on a budget.

Studies find that eating tomatoes regularly can reduce the risk of men getting prostate cancer and they are packed full of vitamins – including vitamins A, C and E.  Tomatoes also contain flavonoids (natural anti-inflammatories), potassium and other mineral salts.

Lentils are a good source of protein which help to lower cholesterol in addition to slowing down digestion and stabilizing blood sugar levels. This can be especially helpful for those with diabetes, insulin resistance or hypoglycemia.

Join us tomorrow from 11:30 in the cafe tomorrow, and we’ll break bread together.  Contact Chaz or Rachael on 0116 2559995 for more information.

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HIV gene therapy using GM cells hailed a success after trial

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A radical gene therapy to combat HIV using genetically modified cells that are resistant to the virus has been declared a success by scientists following the first clinical trial.

The treatment, which has never been tested on humans before, raised patients’ defences against HIV by replacing some of their natural immune cells with GM versions.

Tests on people enrolled in the trial found that the disease-resistant cells multiplied in their bodies.

Half of patients were taken off their usual drugs for three months and scientists recorded reduced levels of the virus.

Scientists were cautious not to draw strong conclusions from the small scale trial, which was designed to assess the safety of the therapy, but the early signs have raised their hopes.

“We are absolutely encouraged by these results,” said Bruce Levine, who helped to run the trial with a colleague, Carl June, at the University of Pennsylvania. “This is potentially a new therapy for HIV.”

A few shots of modified immune cells, or perhaps even one large infusion, could become an alternative for HIV patients who currently face spending the rest of their lives on antiretroviral drugs. But Levine said any improvement in the patients’ health would be welcome, even if the therapy had to be used alongside existing treatments.

“People diagnosed in their 20s are on antiretroviral therapy for the rest of their lives. There are side effects. People miss days. And there is drug-resistance. This is a continuing problem,” he said. “Cure is a four letter word. We don’t like to use it, particularly with HIV. We are looking at improving the health and immune function of people with HIV,” he added.

The therapy mimics a rare but natural mutation that makes about 1% of the population resistant to the most common strains of HIV. To infect cells, the virus must latch on to proteins that poke up from the surfaces of the cells. But people with the mutation lack the right protein, called CCR5, so HIV cannot get inside their immune cells. The trial centred on 10 men and two women, aged 31 to 54. All were HIV positive, and had been diagnosed between three and 23 years ago.

The scientists began by collecting white blood cells from each of the HIV patients. They then used a procedure called gene editing to modify the cells, so that they carried the rare mutation that makes people resistant to HIV. Finally, they multiplied these cells in the lab and infused a batch of 10 billion back into each patient.

At the start of the trial, all of the patients were on standard antiretroviral therapy. But after infusing them with modified immune cells, six were taken off their usual drugs. As expected, the amount of HIV virus in their bodies began to rise. But as the freshly-injected immune cells multiplied and circulated, they pushed levels of the virus back down again.

Two of the patients were put back on their usual drugs early, because their HIV came back very quickly. But the remaining four showed improvements. In one patient, levels of HIV fell so low they could not be detected. The scientists later found out that he had inherited the rare resistance mutation from one parent, but not the other. “That effectively gave his immune system a head start,” Levine said.

As expected, the infusions led to a rapid rise in the number of immune cells circulating in the patients, but the number of modified cells fell over time, halving roughly once every year. But in patients taken off their drugs, the modified cells fared better than their natural immune cells, presumably because they were more resistant to the virus. Some of the modified cells have lasted for several years. The trial has been running since 2009. All of the participants in the trial are now back on antiretroviral drugs.

Scientists have been excited about the prospect of genetically modifying patients’ immune cells to make them resistant to disease since doctors effectively cured an HIV patient in 2008. Timothy Brown, also known as the Berlin patient, had a bone marrow transplant to treat his leukaemia. Spotting their chance to treat both conditions, his doctors found a donor who carried the rare mutation that made their immune cells resistant to HIV. Immune cells are made in the bone marrow. Since the operation, Brown has had no detectable level of HIV in his body and no longer takes anti-HIV drugs.

Bone marrow transplants are risky operations and cannot be given to everyone with HIV. But modifying patients’ immune cells might be the next best thing. One shortcoming of the latest therapy is that the patients still make normal immune cells, which can and will be infected by the HIV virus.

Levine said one hope for the future was to genetically modify stem cells in the patient’s bone marrow that grow into immune cells. Those patients might then produce a steady flow of resistant immune cells, leaving HIV nowhere to hide.

The World Health Organisation estimated that in 2012, 35.3 million people globally were infected with HIV. Some 2.3 million became infected that year, with more than 1.5 million dying from Aids-related causes. Around 100,000 people live with HIV in the UK, though an estimated fifth are undiagnosed and do not know about their condition.

The latest treatment was not without its problems. Writing in the New England Journal of Medicine, the authors report a total of 130 mild or moderate side effects, 32 of which were linked to the modified cells rather than the infusion procedure. The most common reactions were fever, chills, headaches, muscle and joint pain. One patient was taken to the hospital’s emergency department after falling ill. The scientists note too that the patients’ body odour took on the smell of garlic, a consequence of them breaking down dimethyl sulfoxide, used to preserve the genetically modified cells.

The results of the trial were welcomed by other scientists. Angus Dalgleish, an expert in HIV at St George’s hospital in London, who was not involved in the study, said the cost of antiretroviral drugs over a patient’s lifetime, and the side effects some patients face, meant there was a real need for an alternative therapy.

“Anything that will prevent patients being on drugs the whole time, that allows you to manage the infection without those drugs, is a serious contender,” he said.

The research team now hopes to begin larger trials to see how well the therapy works in more patients, and to test the benefits of different doses.

George Church, a geneticist at Harvard University said that the Pennsylvania team’s therapy was “very important” because it showed that gene editing could be used to help large sections of the population. He and others are working on new forms of gene editing that could allow more precise genetic modification of human cells.

In an editorial accompanying the report, Mark Kay and Bruce Walker at Stanford and Harvard Universities wrote: “The tantalising question raised by the transient treatment interruption is whether it might actually have been partially effective. A definitive answer to this question will require additional studies.”

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Raise awareness of HIV and Poverty in your area

chickpea

Remember this article where we mentioned that thousands of people with HIV have been left struggling in poverty by the Government’s welfare reforms?  (Some people can’t even afford basic food which is need to take with HIV medicines).

In that, we shared the Terrence Higgins Trust report on HIV and Poverty, it’s worth a read, click here for your copy of the report.  It’s based on evidence gathered from the THT’s Hardship Fund and The Food Chain.

The factors that push people into poverty are varied and complex. Having HIV can contribute to a deteriorating financial situation. In turn financial hardship can lead to more significant health problems for those living with HIV.

Local councils, including Leicester City and Leicestershire County councils have a responsibility for the health and wellbeing of the people in their community. It is vital that they know about the needs of people living with HIV in our area so that they can factor them into their strategies for health and support.  They need our support, otherwise how can they plan their budgets effectively if we don’t inform them of the issues we face locally?

You can help raise awareness by emailing your Cabinet Member for Health to tell them about the HIV and Poverty Report and ask them whether the needs of people living with HIV are a part of their planned health and support services.

The Terrence Higgins Trust have created a simple email which you can send to your Cabinet Member for Health. Simply complete your details an email will be generated which you can customise before sending.

So before you click away and read another post, or share this to your networks.. ask yourself, “What can I do“? – You can click here and email your local Cabinet Member for Health! We encourage you do so.

Thanks,

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Training Sessions at LASS

LASS HIV Pocket

LASS offer a range of training workshops to educate and inform on a variety of aspects on HIV.  Heres our schedule from February to March 2014.  All sessions include group discussions and some include guest speakers. Please book using the LASS training booking form (word) (pdf) and email it to training@lass.org.uk.  ALternatively, please call 0116 2559995. 

HIV Basics

Friday 14th March 10.30 – 13:00

Elementary information about HIV, transmission, risks, testing and statistics. This will be of interest to anyone who currently has limited knowledge about HIV.

HIV & the Law
Friday 28th March: 09:30 – 13:30 (with Robert James)

A session to discuss the current situation about HIV & the Law – with information from the recent Keeping Confidence workshop organised by Sigma Research and Birkbeck College. (For full details and to book, please visit this post).

HIV and New testing opportunities workshop
Friday 11th April: 10:00 – 13:00

A workshop on home testing – exploring what the implications of home testing (e.g. inter alia competence in self testing, state of mind of the tester, social implications after receiving one’s result etc), what measures can be put in place in order to ensure it is a success e.g. working with kit providers such as pharmacies

Please note that sessions will start promptly and late comers may not be admitted to the session.

HIV & Relationships
Friday 25th April: 10: – 13:00 

There will be several workshops on the theme of HIV & relationships with the objectives of exploring different topics including:

  • Disclosure – talking about HIV Status with different people in your life
  • Sexual Health Q & A
  • Sero-discordant relationships
  • Getting tested as a couple
  • Family relationships and knowledge

HIV AND SEX FOR MONEY (DATE CHANGED)
FRIDAY 5TH MAY: 10:00 – 13:00 (NEW FUTURES)

We have had to postpone the above training session from February to Friday 5th May.  We will set up eventbrite booking for this and will provide more information closer to the time of training.

Prostitution: Perception & ideology

  • The aim of the session is to demonstrate how and why some people get involved in prostitution, try and dispel some myths and stereotypes of those concerned and why they may remain in the street and indoor prostitution (issues involved could be love for sex, supplementing income, not getting enough sex from partner etc, adventure)
  • The session has been designed to demonstrate how prevailing belief systems about prostitution in society have a direct often negative impact on the lives of those involved
  • The session will also explore the impact that being involved in prostitution has on an individuals’ health, welfare, education and sexual health

You can come along to one, two or all of them – what ever works for you.

Celia Fisher
Sexual Health Promotion Coordinator

Tel: 0116 255 9995
Fax: 0116 255 9979
E-mail: training@lass.org.uk