Monthly Archives: June 2014

Deafblind Awareness Week 2014

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Deafblind Awareness Week is a great opportunity to raise public awareness about issues facing people who live with deafblindness.

About 23,000 people in the UK are deafblind, but these figures do not take into account the large number of elderly people who are losing both their sight and hearing. The number of people with a combined sight and hearing loss could therefore be as high as 250,000.

Deafblindness is a visual and hearing impairment. These impairments can be of any type or degree and are sometimes called multi-sensory impairments (MSI). There are many different causes of MSI. Most people who are multi-sensory impaired have some useful vision and/or hearing.

Deafblind Awareness Week always takes place on the week of Helen Keller’s birthday. Although born with sight and hearing on June 27th 1880, following an illness in 1882 she became deafblind. Helen was probably the most famous and influential deafblind person to have lived.

Read about HIV & Blindness:
An epidemic of blindness: a consequence of improved HIV care

The celebration of Deafblind Awareness Week is vital for a number of reasons. It provides many great opportunities to:

  • bring together old friends and make new ones while having fun!
  • celebrate the achievements of people within the deafblind community
  • introduce the general public, community groups and corporate bodies to issues facing people living with deafblindness
  • raise the public profile of deafblindness, which will in the long term assist with issues of resourcing and securing funds for services
  • promote the range of services available
  • educate the general community about deafblindness

Deafblind UK is currently assisting thousands of deafblind or dual sensory impaired people throughout the country to cope with their disability and to lead as fulfilled and independent lives as possible. The charity offers comprehensive services to deafblind people, their support assistants and other professionals. These include training in communication and rehabilitation skills, a free 24 hour helpline, a regional network of staff and volunteers, a varied leisure programme and a range of publications in different reading formats.

Want more? – Check out this heartwarming moment deaf and blind person experiences joy of World Cup

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Family, Faith & Football Day (12th July)

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Family, Faith & Football Day
Featuring LASS “Know your HIV Status” in partnership with the African Development Project

Men’s football tournament & Womans Walking Challenge.
Saturday, 12th July 2014
10am – 8pm
At the Emerald Centre (Map)
Gypsy Lane
LE5 0TB

Music, Food and much more from 12:30
Bar open from 12:00 noon
(No alcohol to be brought onto the site)

Health Stalls
Football starts at 10:00am – final: 4:30pm

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Video Games, Social Networks May Help Prevent HIV

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Digital outreach efforts delivered via text messages, interactive games, chat rooms, and social networks may be an effective way to prevent the spread of HIV, according to a recent study.

Researchers from Columbia University Medical Center found that eHealth interventions are associated with reductions in risky sexual behaviors and increases in HIV testing among men who have sex with men.

Despite decades of outreach and education efforts that have stabilized human immunodeficiency (HIV) infection rates in the United States, the pace of new infections among men who have sex with men has been steadily increasing, particularly among young adults and racial and ethnic minorities.

“This is a population that is very used to technology, and there is built-in privacy and immediacy with digital communication that may be especially appealing to men who aren’t comfortable disclosing their sexual orientation or their HIV status in a face-to-face encounter,” said Rebecca Schnall, lead author of the study and an assistant professor at Columbia Nursing. “If we want to reduce HIV infection rates, particularly among younger men, we need to explore the use of technology to meet them where they live – online and on their phones.”

For the study, researchers conducted a systematic literature review to determine the effectiveness of eHealth interventions for HIV prevention among men who have sex with men. Included studies had to be focused exclusively on eHealth, limited to HIV prevention and testing rather than treatment, targeted only to adult men who have sex with men, written in English, designed as experimental or randomized controlled trials, and published between January 2000 and April.

Researchers found that one interactive website, Sexpulse, designed by health professionals and computer scientists to target men who seek sexual partners online, successfully reduced high-risk sexual behaviors. Another site, Keep It Up! (KIU), used video games to help reduce rates of unprotected anal sex. A third initiative, a downloadable video game, helped mitigate shame felt by some young men who have sex with men, though the reduction in risky sexual behavior wasn’t statistically significant.

Researchers found that Chat rooms may also help prevent HIV. When a sexual health expert entered a popular chat room to regularly post information about HIV testing and respond to instant messages seeking information on HIV, self-reported HIV testing among participants in the chat room significantly increased.

“Taken together, the findings from all of these relatively small studies demonstrate the enormous potential of eHealth as a tool to prevent HIV,” Schnall said. “What we now have is a road map to follow for larger, longer trials that may definitely confirm the effectiveness of eHealth in fighting the spread of HIV.”

Post via University Herald

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Canon Gideon Byamugisha visits Leicester (7th July to 13th July)

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A week of opportunities to build your knowledge and understanding about HIV and other social issues from a personal perspective with Canon Gideon Byamugisha

Who is Canon Gideon Byamugisha?
Rev Canon Dr Gideon B. Byamugisha is an ordained priest in the Anglican Church of Uganda. In 1992, he became the first African religious leader to openly declare his HIV-positive status. He has since devoted his life to an HIV / AIDS ministry which has taken him to over 40 countries in sub-Saharan Africa and many other parts of the world.

Gideon is driven by a passion for the dignity and rights of all people, especially those marginalised, stigmatised and discriminated against because of their HIV positive status. He has played leading roles in the Church of Uganda’s AIDS program, the Uganda AIDS Commission, World Vision International, the Ecumenical Advocacy Alliance, Christian AID, special conferences of the United Nations, and in founding the African Network of Religious Leaders Living With or Personally Affected by HIV and AIDS.

Rev. Canon Dr Gideon Byamugisha in Leicester
Canon Gideon is in Leicester & the area supporting different LASS events from 7th July to 13th July. Canon Gideon’s visit theme is “Love (in any language) fluently spoken heals”. “Reaching & sustaining zero new HIV infections, zero household level poverty, zero youth unemployment & zero socially sanctioned violence”

The following are open to the public and you are very welcome to come to one or more of these.

HIV & Belief Session
Wednesday 9th July 2014: 10 – 1pm
Venue: LASS (53 Regent Road, Leicester LE1 6YF)
Canon Gideon will lead this session on HIV and Belief – exploring issues about stigma, self-stigma, support for testing and condom use and reducing discrimination and prejudice.
The session will be of interest to people whose faith / belief plays an important role in their life also for those with an interest in the role that faith and belief have on people’s lives to help them cope or otherwise with a long term condition like HIV.

An audience with Canon Gideon
Thursday 10th July: 4pm – 8pm:
This is an opportunity for Faith leaders and elders to meet Canon Gideon at LASS. Come along and find out more about his ministry and the theme of this visit. Light refreshments will be served.

Football & Faith
On Saturday 12th July: LASS is holding a Football & Faith Event for all the family at Emerald Centre, Gipsy Lane, Leicester LE5 0TB. 6 football teams will compete for the LASS “Know your HIV Status” trophy; we will be entertained by Gospel choirs; there will be family entertainment including a Bouncy castle; address and prize giving by Canon Gideon. There will be different health information and testing available at the event including HIV testing, information about prostate cancer and blood sugar checks. Tasty food will be available to buy from different stall holders.

For Further information or a training session booking form:
Please contact LASS on 0116 2559995.

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Human Genome Tinkering Could Be Our Best Bet to Beat HIV

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The human immunodeficiency virus (HIV) is a crafty little beast, constantly mutating to mask itself from our body’s defenses, but always entering cells through the same molecular door. The design of that cellular door is governed by our DNA, so why not change the lock by modding our genetic code?

In 2006, a minor medical miracle occurred. HIV-positive leukemia patient Timothy Ray Brown—the second Berlin Patient—received a bone marrow transplant that saved his life in more ways than one. The marrow that he received was from a donor with a unique double mutation to a gene on the 3rd chromosome known as CCR5. This gene codes for the surface protein that the HIV virus uses to gain entry into our white blood cells (specifically, CD4+ T-cells); however the double mutation shuts down these sites and provides a natural immunity to HIV. This mutation is exceptionally rare, only occurring in about one percent of Caucasians and nowhere else. It’s been hypothesized that it’s this same natural immunity that allowed a small portion of Europeans to make it through the Black Plague unscathed.

While that was fantastic news for Brown, who nearly a decade later remains off of his retroviral drug regimen and maintains an undetectable level of the virus in his system, it’s not of much use to the rest of us. With both the mutation prevalence and bone marrow compatibility matches in general being so rare, there was no effective means of using transplants as delivery vectors for this beneficial genetic condition. And it’s worth noting that the very process of becoming HIV-free nearly killed Brown. But that’s where Professor Yuet Kan’s team at UCSF comes in.

Kan figured that if integrating this double mutation wouldn’t work on the macro level—that is, replacing a patient’s bone marrow with that of a naturally HIV-immune person’s—maybe it would at the molecular level, thereby allowing researchers to confer the benefits while cutting out the marrow donation. To that end, he and a team of researchers from the University of San Francisco are employing cutting-edge genetic editing techniques to snip out the beneficial length of DNA coding and integrate it with a patient’s own genome.

The technique they’re using is known as CRISPR (Cas9) genome-editing. CRISPRs, (clustered regularly interspaced short palindromic repeats) are DNA delivery vectors that replace the existing base codes at a specific part of a specific chromosome with new base pair sets. Cas9, on the other hand are the “molecular scissors” that Kan’s team employs to first cut out the offending DNA. It sounds easy, sure—just find the string of DNA you want to replace, then snip it out with Cas9 DNA scissors, and install some new DNA using a CRISPR—however the nuts and bolts of the process are far more technically challenging.

The patient’s own blood cells would be employed as a precursor. Researchers would then have to convert those cells into induced pluripotent stem (iPS) cells by modulating a number of genetic switches, thereby instigating their regression to more basic stem cells. After that, the offending CCR5 gene would need to be knocked out and replaced with the better, double-mutated version before the now fortified blood cells were transfused back into the patient. Not only is there no chance of the body rejecting the new cells (they are the patient’s own after all), the technique also neatly sidesteps the whole embryonic stem cell issue.

While the technique is still in its early stages of development and no human trial dates have yet been set, it holds huge promise. Not just for the 35 million people annually infected by HIV, but also sufferers of sickle cell anemia and cystic fibrosis—two deadly diseases caused by a single protein deformation—could benefit from similar techniques. By figuring out which genes do what on our iPS cells, we could even theoretically grant everyone on Earth immediate immunity to any number of diseases.

Of course, being able to update and augment our genetic code opens up a whole slew of potential concerns, objections, and abuses. Just look at the ire raised over the use of embryonic stem cells in the early 2000s. People were lost their minds because they thought scientific progress was being built on the backs of fetuses. Researchers had to go and invent an entirely new way of making stem cells (the iPS lines) just to get around that one moralized sticking point, so you can bet there will be plenty of chimera, master race, and Island of Dr. Moreaureferences bandied about should we ever begin seriously discussing the prospect of upgrading our genes. And could certainly slow progress in this specific research.

That’s not to say that the hysteria that accompanies seemingly every news cycle these days is completely off base. Like cars, styrofoam, pressure cookers, and thermonuclear bombs, this technology can be used for evil just as easily as it can be for good. And while we’re not nearly as genetically complex as, say, an ear of corn, wrangling the myriad of interactions between our various genes is still an incredibly complex task and one with severe consequences should something go awry—even if we can avoid creating unwanted mutations through stringent testing and development methodology as we do with today’s pharmaceutical development. So why not turn ourselves into the ultimate GMOs? It certainly beats everyone becoming cyborgs.

Article via Gizmodo

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Older HIV patients ‘need more support’

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

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

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

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

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

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

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

‘Better co-ordinated’

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

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

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

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

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

Stigma

Maurice Greenham was diagnosed with HIV in 1984.

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

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

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

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

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

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

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

Story via BBC

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Stem cells edited to produce an HIV-resistant immune system

Bloods

A team of haematologists has engineered a particular white blood cell to be HIV resistant after hacking the genome of induced pluripotent stem cells (iPSCs).

The technique has been published in the Proceedings of the National Academy of Sciences and was devised by Yuet Wai Kan of the University of California, former President of the American Society of Haematology, and his peers.

The white blood cell the team had ideally wanted to engineer was CD+4 T, a cell that is responsible for sending signals to other cells in the immune system, and one that is heavily targeted by the HIV virus. When testing for the progress of HIV in a patient, doctors will take a CD4 cell count in a cubic millimetre of blood, with between 500 and 1,500 cells/mm3 being within the normal range. If it drops below around 250, it means HIV has taken hold — the virus ravages these cells and uses them as an entry point.

HIV gains entry by attaching itself to a receptor protein on the CD+4 T cell surface known as CCR5. If this protein could be altered, it could potentially stop HIV entering the immune system, however. A very small number of the population have this alteration naturally and are partially resistant to HIV as a result — they have two copies of a mutation that prevents HIV from hooking on to CCR5 and thus the T cell.

In the past, researchers attempted to replicate the resistance by simply transplanting stem cells from those with the mutation to an individual suffering from HIV. The rarity of this working has been demonstrated by the fact that just one individual, Timothy Ray Brown (AKA the Berlin patient), has been publicly linked to the treatment and known to be HIV free today. The Californian team hoped to go right to the core of the problem instead, and artificially replicate the protective CCR5 mutation.

Kan has been working for years on a precise process for cutting and sewing back together genetic information. His focus throughout much of his career has been sickle cell anaemia, and in recent years this has translated to researching mutations and how these can be removed at the iPSC stage, as they are differentiated into hematopoietic cells. He writes on his university web page: “The future goal to treatment is to take skin cells from patients, differentiate them into iPS cells, correct the mutations by homologous recombination, and differentiate into the hematopoietic cells and re-infuse them into the patients. Since the cells originate from the patients, there would not be immuno-rejection.” No biggie.

This concept has now effectively been translated to the study of HIV and the CD+4 T cell.

Kan and his team used a system known as CRISPR-Cas9 to edit the genes of the iPSCs. It uses Cas9, a protein derived from bacteria, to introduce a double strand break somewhere at the genome, where part of the virus is then incorporated into the genome to act as a warning signal to other cells. An MIT team has already used the technique to correct a human disease-related mutation in mice.

When Kan and his team used the technique they ended up creating HIV resistant white blood cells, but they were not CD+4 T-cells. They are now speculating that rather than aiming to generate this particular white blood cell with inbuilt resistance, future research instead look at creating HIV resistant stem cells that will become all types of white blood cells in the body.

Of course, with this kind of therapy the risk is different and unexpected mutations could occur. In an ideal world, doctors will not want to be giving constant cell transplants, but generating an entirely new type of HIV resistant cells throughout the body carries its own risks and will need stringent evaluation if it comes at all close to being proven.

Speaking to Wired.co.uk, Louis Picker of the Vaccine and Gene Therapy Institute at Oregon Health and Science University seemed cautiously hopeful: “This is an old idea, with an extensive literature, that is being updated in this paper with the use of the new CRISPR technology, which makes it much much easier to modify human genes.

“Given that the so-called Berlin patient was apparently functionally cured by getting a bone marrow transplant from a (rare) CCR5-null mutant donor, the approach would indeed be promising from a scientific standpoint. Keeping in mind that bone marrow transplant is not likely to be an option for treating the vast majority of HIV positive subjects on effective anti-retroviral therapy. CRISPR technology is no question a break-through, but whether this application will have wide impact is difficult to predict at this time.”

The California also used another technique to make the alterations to the genes. This resulted in resistance in CD+4 T-cells, with levels of the virus being reduced. However, further T-cell transplants were shown to be needed to maintain this. This result in itself is quite astounding, but not the cure Kan is working for.

Story via Wired

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