April 12, 2009

"When I arrived here, I saw people with HIV being carried all day to get to the clinic," Paul Williams recalls.

"There were no testing services, no education, no treatment and certainly no monitoring of treatment. People just died."

That was the situation in Bwindi, Uganda, three years ago. Dr Williams, formerly a GP in North-East England, has since transformed a tiny and very basic health centre on the edge of the Impenetrable Forest into an efficient community hospital.

And for the past five months, thanks to a small but important piece of equipment, Dr Williams' medical team has been able to monitor the health of patients with HIV from a clinic that fits into the back of their four-wheel-drive "community ambulance".

Bwindi Community Hospital now provides health care for about 40,000 people.

It has a dedicated maternity programme and a children's ward that deals with many cases of malnutrition, as well as other common diseases including malaria and HIV. In total, the hospital takes care of 1,000 HIV positive patients.

Dr Williams describes the environment in which he works: "We're a mile away from the rainforest where there are mountain gorillas, right on the border between Uganda and the Democratic Republic of Congo.

"There aren't any tarmac roads here, there isn't any public transport, and lots of the patients live a day's walk from the hospital. Many of them live a subsistence existence and they can't afford to get here."

So his team packs an "HIV outreach clinic" into its vehicle, and takes it out to remote communities.

Along with the rest of the equipment loaded into the back and strapped on to the roof of the ambulance, there is one modest-looking grey box.

This piece of equipment is a PointCare NOW machine. It was donated to the hospital last year, and has since transformed the care Dr Williams can offer HIV patients.

The machine is a portable blood-testing device - pop in a blood sample and, within 10 minutes, it gives a print-out detailing the condition of a patient's immune system.

It counts CD4 positive T cells. These are the white blood cells that the HIV virus latches on to - attacking and destroying them.

"When we say someone has a weak immune system because of HIV, we mean their number of CD4 cells is low," explains Dr Williams.

"During the course of infection, the number of these cells gets less and less - so you have to count them to see how advanced the HIV is."

The Quest

The machine was developed by PointCare, a company based in the US that specialises in diagnostic equipment for the developing world.

It's an organisation with an impressive pedigree. Petra Krauledat, and her long-time business partner Peter Hansen, founded the company in 2003, having both already had long and successful careers in HIV research.

What people needed was a test that could be used in a little shack of a clinic, transported to remote areas, and that could withstand the heat

Petra Krauledat
PointCare

"Peter invented the first automated CD4 test in the late 1970s, and I led the group in 1982, in Germany, that launched the first HIV screening test in Europe," explains Dr Krauledat.

In the 1990s they were approached by former colleagues who asked them to turn their attention to developing a much-needed, cheap CD4 test for the developing world.

"So we went to Southern Africa to talk to the [medics] actually working there," she says.

What they found surprised them both. "People showed us tonnes of donated instruments just sat in storage. The reagents [or chemicals needed to run the tests] had simply perished in the heat," she relates.

"So 'cheap' wasn't people's biggest concern. What they needed was a test that could be used in a little shack of a clinic, transported to remote areas, and that could withstand the high temperatures.

"We've fulfilled that quest."

Surviving the heat

Dr Hansen invented a test that uses chemical reagent that can be freeze-dried and stored in temperatures of over 40C.

CD4 screening tests use antibodies - molecular tags that recognise and latch onto a chemical marker on the surface of the cell. By attaching to the cells, they act as flags distinguishing CD4 cells from other white blood cells.

But these antibodies need to be "labelled", so they can be detected by a machine.

Traditionally, antibodies are labelled using fluorescent markers, but these fluorescent chemicals perish if they are not kept refrigerated. So they're useless for a medical team operating from a temporary clinic in the heat of an African summer.

Dr Hansen developed a new label. "We use colloidal gold," explains Dr Krauledat. "It's true nanotechnology - extremely tiny gold particles attached to the anti-CD4 antibody."

The gold-bound antibodies are very heat-stable - they can be stored at over 42C for an entire year.

Immediate result

Inside the PointCare machine, the freeze-dried, gold-labelled antibody is liquefied and combined with the blood sample, and with a chemical accelerator that speeds up the attachment of the antibody to the cells. "How the accelerator works is a trade secret, but it allows us to complete the test within eight minutes," says Dr Krauledat.

"Before we had this machine, we'd see somebody in the clinic, then we'd have to see them on another day to collect a blood sample," recalls Dr Williams.

"We had a system of motorcycle riders that went round all of our outreach sites on a particular day to collect samples. They would have to ride for four hours along a muddy road through the Impenetrable Forest, to a laboratory on the other side, where we could get them tested.

"It took us three days to get the result, and we couldn't get it back to the patient until we saw them again two weeks later.

"Now, with this simple piece of technology, we can deal with problems immediately."

The machine is also far cheaper to run than traditional instruments. It is powered via a battery pack. "Because we use colloidal gold, we have an instrument that doesn't consume a lot of power," explains Dr Krauledat.

"Fluorescently labelled antibodies have to be detected with a laser, and those systems are quite fragile and consume more power. We use a [light-emitting diode] detector. It's technology with a lifetime of 180,000 days, doesn't break and it uses almost no power."

'Productive lives'

As well as a CD4 count, the device also counts five other subtypes of white blood cell.

This gives a complete picture of the patient's immune system.

The results provide a physician with a good indication of whether an HIV positive patient might have tuberculosis, give a warning sign of other opportunistic infections, and find out if the patient has anaemia - a debilitating condition that is fairly common in the latter stages of HIV.

We've been able to change HIV from being a death sentence to being something that people can live with and lead productive lives

Paul Williams
Bwindi Community Hospital

It also means that a patient's treatment can be monitored. "HIV treatment is great - anti-retroviral drugs can add up to 30 years to a person's life," says Dr Williams.

"But there are some people who develop resistance to the drugs, or in whom the drugs fail, and we can spot that early on to take action to be able to stop them from getting sick."

In three years, Dr Williams and his team have transformed the lives of their HIV positive patients.

"I started a testing centre in the hospital, then the mobile testing services, and then, once we had access to drugs, developed a treatment programme.

"Now our death rates from HIV are very low. We're able to diagnose it early, manage it early and keep people living with HIV fit and well.

"Over a reasonably short period of time, we've been able to change HIV from being a death sentence into something that people can live with and lead productive lives."

By Victoria Gill, http://news.bbc.co.uk

Anxiety and depression, self-esteem, sleep and sex are the areas of life that pose problems to the greatest number of people living with HIV in the UK, according to a new study published by Sigma Research. They note that these problems relate to the intimate details of personal experience and quality of life, rather than to practical and physical problems.

However, in many instances, people experiencing problems had not received any help or support during the past year. When people did receive help with the top four issues, it was frequently from clinical services, but informal support from friends and family was also highly valued.

Methods
The What do you need? study used a fairly lengthy self-completion questionnaire that was distributed by a range of HIV-related voluntary organisations and a number of HIV outpatient clinics.

A total of 1777 questionnaires were completed by adults living with HIV in the UK. Four out of ten respondents were recruited via aidsmap.com or NAM’s HIV Treatment Update newsletter.

The questionnaire focused on 20 topic areas that previous research had identified as potentially problematic for people with HIV, such as immigration, relationships with family, self-esteem and discrimination. For each of these topic areas, the questionnaire attempted to establish whether the respondent had experienced problems in the past year, and what those problems were.

When this survey was last conducted in 2001, only 6% of respondents were black African, and the researchers have managed to increase participation by people of this background to 15%. Nonetheless, this falls short of the 37% of people with HIV in the UK who are black African (the latter figure comes from the Health Protection Agency’s monitoring of people using treatment services).

Moreover, the sample is disproportionately male (79%, compared to 66% of people with HIV), disproportionately gay or bisexual (72%, compared to 46% of people with HIV) and includes a greater proportion of older people (38% are over 45, compared to 30% of people with HIV).

However, the published report does address this bias by providing analyses of the needs of specific sub-groups such as women, young people, black Africans, people with immigration problems, and people who are recently diagnosed.

Problems
In each of the following areas, seven out of ten respondents reported having problems in the past year: anxiety and depression, self-esteem and self-confidence, sex, and sleeping.

Moreover, when questions about problems were asked in slightly different ways, the greatest levels of need were always in relation to the same four areas.

Many respondents described the cause of their anxiety or depression, and whilst the responses were very diverse, a great many were explicitly related to living with HIV. Moreover, among the most common causes cited for problems with self-esteem and self-confidence were worries about the future, changes in appearance or body, and worries about disclosing HIV status.

The most frequent problem related to sex was having too little or no sex, and this was often linked to poor self-image. Difficulties sleeping were most commonly caused by problems with mental health, physical health or medication.

Whilst these mental-health-related problems were important for all sub-groups, some additional issues were identified by large numbers of people in some of the groups. For example, the top six problems reported by black African respondents were: skills and training opportunities, anxiety and depression, money, self-esteem, sleep and sex. Unsurprisingly, people who had immigration problems tended to also report problems in practical areas such as skills and training, money, housing and work.

Moreover, a quarter or more of all respondents reported problems with mobility, housing and living conditions, household chores and self-care, and eating well.

Sources of help and support
As well as asking about the problems people had experienced, the survey also asked about whether the respondent believed that, with more help or support, their situation could be improved. Similarly, respondents were asked who or what had helped them with their problems over the past year. These results are likely to be useful to commissioners and service providers.

In a large number of areas, over half the people who had experienced problems had not received any help with that problem. This was the case for problems with sleep, self-esteem, training and skills, eating and drinking, household chores, family relationships, money and work. What’s more, three-quarters of those having problems with sex, friendship or alcohol and drugs received no help.

When help was provided, the findings highlight the essential role of informal sources of help and support. For example, friends were among the most commonly called on source of support for problems with mobility, family relationships, friendships, partners, children, work, housing, training and skills, and household chores. Partners, spouses, family and parents also provided support to many.

Counselling and psychology services were frequently cited for their help with anxiety and depression, self-esteem, alcohol and drugs, sexual problems, partner relationships, family relationships, and friendships. HIV clinics were important sources of help for many of the same issues, as well as for problems with eating and drinking.

HIV organisations provided help in a great many areas, especially immigration, housing, money and friendships.

GP practices and prescribed medications were often mentioned for their help with sleep problems, anxiety and depression.

Councils and social services departments were mentioned for their help with housing, but less so for other areas. Moreover, in a number of areas, especially work problems and training and skills, relatively few sources of help were mentioned.

The researchers believe that the range of needs highlighted in the report reveal significant challenges for service commissioners and providers. Moreover, they note that: “Changes in service provision over the last five years have been driven by funding pressures rather than an understanding of the changing needs of people with HIV. Such pressures remain, but a clearer assessment of needs will hopefully improve our capacity to plan and fund appropriate services.”

Reference
Weatherburn P et al. What do you need? 2007 - 2008: findings from a national survey of people diagnosed with HIV. London: Sigma Research 2009

By Roger Pebody, http://www.aidsmap.com