Hear About HIV First Hand

posted: 24/11/2009

Often the best support comes from people who have the same kind of experiences. For people who do not have HIV, hearing people who do have HIV talk about their experiences can be powerful, help end misunderstandings and prevent stigma and discrimination.

The websiite Healthtalkonline's HIV section lets you find out about other people's experiences of HIV. You can watch or listen to videos of a wide mix of people living with HIV, read about their experiences and find reliable useful information about HIV, treatment choices and support.

Healthtalkonline is from the charity Dipex and is based on research into people’s experiences, led by experts at the University of Oxford. These personal stories help people with HIV, families and healthcare professionals, and the whole public to benefit from other people’s experiences.
 

Healthtalkonline has sections for many other conditions, as well as HIV, for example, depression.

HIV at HealthTalkOnline
They interviewed 50 people about their experiences of HIV infection and this is all organised into topics
It also has a section with information resources and a forum. Like many of the health forums on this site, the HIV forum is hardly used; anyone can read questions and comments, and to ask a question or reply, you need to register and log-in.
 

A more popular forum for people with HIV

A far more popular UK HIV+ people’s forum is run by a man with HIV, Hortilad
This has almost 1000 members and is active - 358 Posts on 182 Topics. You can see what the Hortilad HIV+ forum looks like here.
To use the Hortilad forum you need you to register, by choosing a user ID (made of any letters and numbers), a user name (shown on the forum when you post), and a valid email address (tick the box when you sign up, to keep your email address hidden).
 

Click here for HealthTalkOnline HIV Topics
 

Experiences of health care :
Getting a diagnosis
Getting health and social care
Making decisions about treatment
Taking anti-HIV drugs
Challenges of anti-HIV drugs

Looking after yourself :
Coping with mental health problems
Dealing with your thoughts
Talking about it
Becoming informed
Gaining power and strength
Spirituality and religion
Holistic health

Disclosure, discrimination and other challenges :
Secrecy and telling people
Support groups
Dealing with difficulties, finances and benefits
Work and routine
Prejudice, stigma and discrimination
Telling children and parents

Negotiating Sex :
How people became infected
Casual sexual encounters
Sex in relationships
Telling sexual partners

Looking ahead :
Living now & in the future
Illness and death
Finally, what people with HIV want you to know

The USA's Positive Project has more than 100 first-person stories told by people infected or affected by HIV/AIDS. 
On their site you can pick videos of positive speakers by gender, age, where they live, ethnicity, sexuality, topic.

Vote for HIV at Elections

posted: 01/06/2009

The election matters because the tide of public anger with politicians is high, and most people don't normally vote in either county council or European elections. This time abstentions and protest votes for smaller parties like UKIP and BNP, are likely to be far higher than last time.

The risk is serious that parties and candidates will be elected who are hostile to people living with HIV, especially people who are migrants. George House Trust urges everyone to use their vote.

Some migrants with HIV have no right to vote and many others have not registered. This makes it more important that the rest of us do vote, and vote thoughtfully.
 

Who can vote?
It is too late now to register for this election because you have to register at least 11 working days before an election. Find out here who can register to vote and how to do this in time for the general election which is due before early June 2010 - simply click here or scroll down this page to the line across the page, for the full details and the weblinks.

One or Two Elections?

There are two elections, but most people in the region will only be able to vote in the European one. The council elections are only for County Councils - in the Northwest that means people living in the Lancashire County Council and Cumbria County Council areas. There are no elections this year for unitary councils, like those in Greater Manchester, Merseyside, Blackburn with Darwen, and the two new unitary councils in Cheshire.
 

European Election Candidates and Parties in Northwest England
The EU Parliament and Commission has some useful powers affecting people living with HIV and it has some influence over migration. That is why voting in the European election is important.
We are a charity and, by law, cannot be party political – we can't tell you who to vote for, or campaign for a party. But we can provide information to help you decide how to use your vote.

In the European elections all of Northwest England is one constituency. Proportional Representation decides which candidates get elected to the 8 seats in the EU Parliament for the NW region.

The UK voting system for the European elections is proportional representation - a regional closed list. This means that political parties put forward names of candidates for each region, in the order they want them elected. You have one vote and put a cross in the box next to the party you want. You can't vote for any individual candidates, except for an independent candidate who is not in a party. (There is one independent standing in the Northwest.)
 

Who's Standing?

You can check here the full lists of candidates for each party (and the 2004 election results) here
 

In 2004, 

• Conservatives won 4 seats,
• Labour won 3 seats,
• Liberal Democrats won 1 seat,
• UKIP (United Kingdom Independence Party) won 1 seat.

This year the number of seats has been cut across Europe, so the Northwest will have 8 MEPs, not 9 as now.
 

Please do use your vote
George House Trust asks you to vote in the election on Thursday 4 June, taking into account the impact the party you choose to put a cross next to may have on everyone living with HIV, not just in the UK, but the rest of Europe too, and for the influence the EU can exert in the rest of the world on HIV.

County Council elections in Lancashire and Cumbria
If you have a vote in these elections we urge you to use it - the BNP won seats on Burnley Council at the last election and now hope to win seats on Lancashire County Council.

Who can vote and how do I register?
 

You can register now to vote for the coming general election, which has to take place by early June 2010, if you are:
• 16 years old or over (but you won't be able to vote until your 18th birthday), AND
• a British citizen, OR
• an Irish, EU, or qualifying Commonwealth citizens.
“Qualifying Commonwealth citizens are those who have leave to enter or remain in the UK, or do not require such leave.”
 

At the European elections, but not at Council or Parliamentary elections, EU citizens can also vote.
 

Registering to Vote
You can register to vote online – but you have to print, sign and post the application form to your local council's Electoral Registration Office.

The application form is here. If you enter your postcode in the box (top right) it will tell you the address of your local Electoral Registration Office.

Nationality Question

One question you must answer on the form is about your nationality – simply write in Zimbabwean, or whatever your nationality is – this must be UK, Irish, a Commonwealth country, or another EU country, for you to vote.
 

The electoral registration form has a simple declaration you must sign which says
“As far as I know, the details on this form are true and accurate. I understand that to provide false information on this form is an offence, punishable on conviction of up to 6 months and/or a fine.
I confirm that I am a British, Irish, European Union or qualifying Commonweath citizen.
Qualifying Commonwealth citizens have leave to enter or remain in the UK, or do not require such leave.”
Normally if you sign this, it is simply accepted. You are not normally asked to show any documents to prove your nationality and leave status.

Am I a 'qualifying Commonwealth Citizen'?
Section B 6 in the Guidance for Electoral Registration Officers explains who can register.
Unfortunately it doesn't explain this in plain English – it refers to the law which is section 4(6) of the Representation of the People Act 1983 and suggests you could check with the Home Office.
 

The Guidance for Electoral Registration Officers says
Commonwealth citizens - Entitlement to vote
6.14 Qualifying Commonwealth citizens are entitled to register as Parliamentary and as local government electors provided that they also fulfil the age and residence requirements for such registration and are not subject to any other legal incapacity.
Meaning of ‘qualifying Commonwealth citizen’
6.15 A person who is a Commonwealth citizen is a qualifying Commonwealth citizen for registration purposes if they do not require leave to remain in the UK or they do require leave to remain in the UK but have been granted such leave or are treated as having been granted such leave.
6.16 Any type of leave to remain is acceptable, whether indefinite, time limited or conditional.
6.17 Qualifying citizens of the following countries meet the nationality criteria to register in respect of all elections.

Commonwealth countries
Antigua and Barbuda, Australia, The Bahamas, Bangladesh, Barbados, Belize, Botswana, Brunei Darussalam, Cameroon, Canada, Cyprus, Dominica, Fiji Islands, The Gambia, Ghana, Grenada, Guyana, India, Jamaica, Kenya, Kiribati, Lesotho, Malawi, Malaysia, Maldives, Malta, Mauritius, Mozambique, Namibia, Nauru, Nigeria, New Zealand, Pakistan, Papua New Guinea, St Kitts and Nevis, St Lucia, St Vincent and the Grenadines, Samoa, Seychelles, Sierra Leone, Singapore, Solomon Islands, South Africa, Sri Lanka, Swaziland, Tonga, Trinidad and Tobago, Tuvalu, Uganda, United Kingdom, United Republic of Tanzania, Vanuatu, Zambia, Zimbabwe.
 

Asylum

The Guidance says this about asylum:
6.18 The fact that an applicant or elector has claimed asylum has no connection to their right to be registered as an elector ….. The Electoral Registration Officer can only make enquiries as to nationality and whether a person has any type of leave to remain in the UK.

The Representation of the People Act 1983, Section 4(6) is no real help in deciding who is a qualifying commonwealth citizen.
 

The George House Trust guide on who can register to vote

This is our understanding of the rules:
If you are a citizen of one of the Commonwealth countries listed above, what matters is
do you

• require leave to enter, or
• have you been granted leave to remain, or
• are you treated as having leave to enter, or
• are you treated as having leave to remain.

If your honest belief, after checking the information below, is that you can truthfully sign the application to register for a vote which states As far as I know, the details on this form are true and accurate, you can apply for a vote.
 

Leave to enter
Commonwealth citizens always require leave to enter, unless they have the right of abode.
- see Immigration rule 7:
Most Commonwealth citizens with right of abode in the United Kingdom can simply check their passport – a UK stamp in the passport will state if you have the right of abode in the United Kingdom; or you will have a UK certificate of entitlement certifying the right of abode. Official Guidance on Right of Abode
Some other Commonwealth citizens will have the right of abode, even if they don't have this stamp in their passport, or a certificate of entitlement. It is unlikely recent migrants from the Commonwealth will have this. This right of abode depends on your birth, or marriage. South Africans and Pakistani citizens won't be able to claim this. Check the link above for the birth and marriage requirements for this.
 

Leave to remain
Who has leave to remain is complicated, but people with leave to remain will either have a current, valid stamp in their passport saying you have leave to remain, or will have some other Home Office / Borders and Immigration Agency official document or letter saying this.
The rules about leave to remain are here, and depend on your reason for being here.
 

Treated as having leave to enter
Commonwealth citizens who have made a valid claim for asylum, or for humanitarian protection, who have not had a final refusal, are treated as having leave to enter.
 

Treated as having leave to remain
Commonwealth citizens whose claim for asylum or humanitarian protection has been approved, are treated as having leave to remain. Others are also be treated as having leave to remain, for example refused asylum seekers who are receiving ‘section 4 support’. 

If you think you should also be treated as having leave to remain, you could check with a Citizens Advice Bureau, or your immigration adviser. We suggest you print this information and take it to them, with your passport, and any official letters, or papers about your immigration / asylum situation.

No right to vote
Other Commonwealth citizens, including people whose

• claims for asylum or humanitarian protection have had a final refusal, or
• who have overstayed their visa, or
• who entered the UK irregularly,

have no right to vote.

You cannot have the right to vote if you are not a citizen of a Commonwealth country, or of an EU country. This means, for example, citizens of the Democratic Republic of the Congo, USA, Brazil, etc. can't ever vote in UK elections, unless they become British, or become a citizen of another EU country.

Register to vote
You can register to vote online – but you have to print, sign and post the application form to the local council's Electoral Registration Office.

The application form is here. If you enter your postcode in the box (top right) it will tell you the address of your local Electoral Registration Office.
 

George House Trust provides this information in good faith but the responsibility is yours to check you have a right to register. If you are in doubt you could ask your local Citizen's Advice Bureau  , or your immigration / asylum adviser.
 

We suggest you print this information and take it to them, with your passport and any official letters or papers about your immigration or asylum situation.

CD4 Counts in Ugandan Rainforest

posted: 14/04/2009

"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 rainforest 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.
 

Treating HIV in the rainforest
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.
 

Portable and practical fast CD4 testing machine vital
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 for practical, cheap, quick, easy CD4 counts
The machine was developed by PointCare, a USA company that specialises in diagnostic equipment for the developing world. It's an organisation with an sound 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.

"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.
 

Nanotechnology gold
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 rainforest, 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 by a battery pack. "Because we use colloidal gold, we have an instrument that doesn't consume a lot of power," explains Dr Krauledat. The standard technology [which uses fluorescently labelled antibodies] means they 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."
 

Complete picture given with 5 other blood counts
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.
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."
 

3 years has changed community's life prospects

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."

Source

Report on the development of an easier and cheaper system for CD4 checks