HIV Treatment Charging Harms

posted: 28/06/2010

The UK rules that mean some migrants have to pay for HIV treatment are harming the health of migrants and the UK public, says a new study in the journal AIDS Care.

The study of African migrants with HIV in London found some migrants delay taking HIV tests, some only go for HIV treatment when they are so sick they need an ambulance to take them to hospital, some use herbal treatments that don't work, and others send abroad for HIV drugs but don't take enough of these.
 

Findings and the government review

This Wednesday the government ends its public consultation on changing the rules and guidance about who has a right to free NHS treatment. Anyone who has a sexually transmitted infection (STI) or an Infections Disease always has a right to free treatment, but not if they have HIV. The proposed new rules and guidelines still bar some migrants from automatic free HIV treatment. While asylum seekers and those with leave to remain are entitled to free care in NHS hospitals, refused asylum seekers and undocumented migrants, including pregnant women with HIV, among others, are sometimes handed very large bills for HIV and other medical treatment.
 

The researchers interviewed HIV-positive migrants from Zimbabwe, Zambia and South Africa who live in London. 70 people took part in eleven focus group discussions.
 

Problems getting a GP
Even though there is no law stopping migrants from having a GP or free primary care, people said they had problems even registering with a GP. They are often asked to show documents that they do not have (for example, their passport – these are often held by the Home Office / UK Borders Agency because they are making an asylum claim or other application).
 

Waiting until you need an ambulance
The law says all treatment in a hospital Accident & Emergency department is free-of-charge for everyone. Many people in the survey knew this, and said they did not try to get treatment until their condition was so serious that an ambulance was needed. One man said:
“You would rather wait for a situation where you get taken to hospital by ambulance because even if you walk in they want to know who is your GP. And if you don’t have one they become very suspicious.”
Accident & Emergency (A&E) treatment is extremely expensive to provide. Moreover, in most cases, the person then needed immediate HIV treatment and a lengthy stay in hospital.

The rules say if you are admitted to a hospital ward after A&E, or are referred to another department (eg the HIV clinic) then you will be charged; but HIV treatment should always be provided because it is 'immediately necessary.' If you can't pay the bills, the hospital will have to cancel the debt anyway.

Some people had received bills for several thousand pounds for hospital admissions, surgery and treatment. The researchers found that these experiences often affected people’s feelings toward health providers.
 

In hospital but fearing bills and immigration
People who were entitled to free NHS care feared intrusive visits from immigration and hospital officials. For example one woman who had been recently diagnosed with HIV received a bill for hospital treatment:
“I was worried how am I going to pay this £4000? So what kills you first is the stress and worry . . . I found myself thinking if I did not have indefinite leave to remain in this country then what would I do?... You’d just try to go away, you’d remove the drip and run away from there before immigration got there.”
 

Do it Yourself treatment
Some people said they treated themselves. Some sent for drugs in their home countries, but said they took too few pills for them to work properly, for example. Some had depended on herbal remedies and other alternative treatments, and sometimes delayed taking a HIV test until it was clear herbal and alternative treatments were not working. One woman said:
"There are some people who do not have papers in this country, who can’t have access to a GP or a hospital and they have to rely a lot on the traditional medicines."
Although HIV testing is free for all (on public health grounds), HIV treatment is not. People said this discouraged others from HIV tests:
“If I cannot access services, then there is no reason for me to test. If I test and I know I’m HIV-positive, I know it will be very difficult to access [treatment].”

The researchers end by saying that current policies for charging some migrants may appease a part of the UK electorate but act as a barrier to the uptake of HIV testing and treatment. Moreover, these policies are pushing some people to resort to other forms of treatment that may be costly, harmful or ineffective. As well as having implications for the health of individuals, the policies are likely to have an impact on the onward transmission of HIV.
 

Campaigning for free HIV treatment for all
This Wednesday the Department of Health closes its public consultation on planned changes to the rules and guidance for free NHS treatment. This does not include adding HIV to the list of sexually transmitted infections and infectious diseases that would mean free treatment for everyone. George House Trust and the HIV sector are campaigning for free HIV treatment for all.

Source and reference 
Thomas F et al. ‘‘If I cannot access services, then there is no reason for me to test’’: the impacts of health service charges on HIV testing and treatment amongst migrants in England. AIDS Care 22: 526-531, 2010.

HIV Treatment Rights Review

posted: 23/06/2010

Wednesday 30 June is the last chance to tell the Department of Health whether its plan to update the law and official guidance on who is entitled to free NHS hospital treatment is right. At present some migrants with HIV are charged for HIV treatment, although every other sexually transmitted infection (STI) and infectious disease is always treated for free, for everyone. The rules affect lots of other people in other ways but our focus is on access for all people in this country to free HIV treatment.

Free treatment for STIs like HIV, and infectious diseases makes financial and disease management sense. It saves money and stops diseases spreading when states provide free treatment for these for public health reasons. Untreated conditions spread diseases and increase the total bill.

New Regulations - useful changes
The new regulations propose some useful changes:

• Refused asylum seekers getting Section 4 or Section 95 support will be exempt from charges
• Primary care services are explicitly excluded from charging
• Unaccompanied migrant children will be exempt from charges
• People with an Article 3 claim will be included alongside people seeking asylum or humanitarian protection, and so will be exempt from charges

New Guidance - some good bits

The new official Guidance is also better:

• Maternity treatment is now defined as 'immediately necessary' treatment. This means there will always be a right to treatment and it must be provided. But a bill could follow.
• The Guidance does not yet say, but we are hopeful that HIV will also be defined as ‘Immediately necessary treatment’ because that is what the British HIV Association has formally told the Department of Health.
• Overseas Visitors Managers and clinicians are instructed to tell patients that all ‘immediately necessary’ treatment will not be withheld, regardless of their ability to pay.

Want to help?

The major problem with the rules is that there is still no automatic right to free HIV treatment. The Department of Health says it is reviewing this rule. We think this shouldn't wait a moment longer and HIV community organisations are making the case now for free HIV treatment for all.

The review of the rules and guidance was started before the election. Now there has been a change of government, an emergency budget, cuts and more cuts to come in the autumn Spending Review, so it is important to support the positive changes they have made. We want to push the Department of Health to take the sensible next step of adding HIV treatment to the list of Sexually Transmitted Infections and Infectious Diseases which are all treated for free, whoever you may be. And we want to discourage the Government from making some unhelpful changes that it plans.
 

NAT (National AIDS Trust) response

NAT have prepared a fairly simple response for some HIV organisations. This deals with the key points. You could use this - just add your name and details in the first pages and send it to them by email. You can of course say whatever you wish and make your own points.
 

If you want to comment in more detail you could look for more in the Model Response you can find on a blog set up by Medact and other community organisations that are campaigning together.
 

Here are all the Department of Health papers for the consultation. 

George House Trust draft response

Here you can read the draft response of George House Trust.
Please note that this is not our final or official view but we are sharing this to help others, before the official deadline. We welcome any comments and suggestions.

We have considerable experience with HIV treatment charging and this draft is built on our experience, expertise, and we are especially grateful to NAT and the blog for their detailed work on this. 

This George House Trust draft is more detailed than the NAT response above and it includes some significant additions. 

Two of these George House Trust extras are 

• much better Guidance is needed on who fits the definition of 'ordinarily resident'. The details are for legal experts BUT this is really important. The poor Guidance on who is 'ordinarily resident' has caused most of the problems with charges for HIV treatment in NW England. We have won almost every case we have argued on this point. We have been able to argue that most migrants with HIV who are charged are in fact 'ordinarily resident' in this country and so should never have been charged. If you can show you are 'ordinarily resident' none of the charging rules apply.
• There is no system for independent reviews or appeals - like there is if your claim for a state benefit is refused, or your asylum claim or immigration appeal is refused. In the 21st century, basic rights like hospital care deserve a system of independent reviews and appeals considered by an independent Tribunal chaired by a judge, so people can obtain justice and justice is seen to be done.

Condoms for Pope in Portugal

posted: 12/05/2010

While the Pope’s arrival in Portugal yesterday was greeted by thousands of faithful lining the streets of Lisbon, there was also a protest against the Vatican's refusal to approve the use of condoms to prevent HIV.
 

The condom protest began as a small Facebook group just seven weeks ago but became a nationwide campaign backed by thousands of mostly young people, in one of the most devoutly Roman Catholic countries in Europe.

"We never imagined that we would one day have 14,500 people supporting us," the campaigners said yesterday after their Facebook group, formed on 20 March, mushroomed into a full-scaled protest against the Vatican's attitude to HIV prevention.
 

18,000 condoms and HIV awareness
Hundreds of young people flocked to distribution points in the capital to hand out free condoms, to protest the Vatican's refusal to endorse the use of condoms as a method to fight HIV. The campaign began when three young lawyers, Rita Barroso Jorge, Diogo Caldas Figueira and Joana Vieira da Silva, created a small group on the social networking site Facebook on Mar. 20. But it mushroomed until it had the support of nearly 15,000 people.
 

"By handing out free condoms, we are raising awareness in the fight against AIDS," said one of the campaign's organizers, Barroso Jorge. Their campaign was "a success beyond our expectations, because we distributed 18,000 condoms in three hours instead of the 16,000 in five hours that we had hoped to hand out."
 

The initiative, which has the support of Portugal's main women's and gay rights associations, among other civil society groups, will continue Wednesday and Thursday in Fátima, and Friday in Porto, the pope's next stops.
 

Another of the organizers, Caldas Figueira, pointed out that in March 2009, the pope acknowledged in Africa that HIV was a global tragedy, but the pope claimed the distribution of condoms has made the epidemic worse.
 

"Our protest was born in response to the pope's amazing distancing from reality and the extremely serious consequences that his statements can cause in the fight against AIDS," said Figueira.
 

Liberalising nation
The pope's visit comes as Portugal, where 90% of people say they are Roman Catholics, increasingly turns its back on the Vatican's preaching. President Aníbal Cavaco Silva, who met the pope today, is expected to sign off shortly a law that will make Portugal the sixth European country to permit gay marriages.
Portugal's centre-left Socialist government has also introduced a law allowing a judge to grant a divorce even if one spouse is against it. The same government, led by Prime Minister José Socrates, passed a law in 2007 finally allowing abortion in Portugal. Benedict sharply criticised the abortion law yesterday, saying public officials must give "essential consideration" to issues that affect human life. "The point at issue is not an ethical confrontation between a secular and religious system, so much as a question about the meaning that we give to our freedom," he said.
 

George House Trust comment
 

Pope Benedict will visit England and Scotland for four days from 16-19 September 2010. The power of social media in raising HIV awareness and activism is clear. Will someone be inspired to use the pope’s visit to Great Britain to raise HIV awareness here?
 

Visit plans

The pope flies to Scotland and sees the Queen at Holyrood in Edinburgh. He will celebrate Mass in Glasgow. In England, he’ll say Mass in Coventry but spend most of the rest of the time in London, with a speech to British civil society at Westminster Hall, and in meetings and services with the leaders of other Christian traditions.
 

Source
Pope’s UK visit
 

Visit of MP Leading on HIV

posted: 10/08/2009

The Chair of the All Party Parliamentary Group on AIDS, David Borrow MP, came on a fact finding tour to George House Trust last week. David Borrow is MP for a NW constituency, South Ribble.  

Two Positive Speakers gave excellent presentations and we also focused on other types of volunteering. We raised issues around funding, people 'lost to treatment'*, and how to improve links with MPs and local councillors.

The visit was useful and appreciated.

This is what he has to say on his website about chairing the All Party Group. 

"Although there are relatively few people in South Ribble directly affected by HIV/AIDS, I have always been interested in doing what I can to build public awareness of the disease both here in the UK and overseas. I have visited the George House Trust in Manchester on a regular basis to see the work they do in the North West, I have also visited African countries such as Botswana, Uganda, Malawi, South Africa, Kenya and Ethiopia to see the work being undertaken there. Last year I visited FOMO, a Walmer Bridge based charity looking after over 5,000 orphans in Malawi."

All Party Parliamentary Group on AIDS

*  Lost to Treatment

Check the next issue of Insight for the results of George House Trust's investigation into hundreds of people diagnosed with HIV who have abandoned their NW HIV clinics. Insight 49, the Pride issue, will be available in paper, and on our website, and as a .pdf file, from 20 August.  

Photo from MP's website

Court Rules on Treatment for Migrants

posted: 14/04/2009

Almost a year after the High Court said most migrants are entitled to free NHS hosptal treatment, the Appeal Court has now rejected that ruling. The long running struggle to ensure people living with HIV in this country always have free treatment will continue.

Although the Appeal Court ruling says there is no legal right to treatment, they did rule that the Department of Health Guidelines are unlawful.

Almost a year ago the High Court ruled that most migrants were "ordinarily resident" even if their asylum claim was refused. About a year before that the application was made to the High Court after a NHS hospital refused free treatment to a migrant. The Courts are very slow because there aren't enough courts and judges to deal with this type of case - a 'judicial review.'

Appeal Court rules

On the 30 March 2009 the Court of Appeal decided that the Department of Health's own guidance restricting access to healthcare for migrants is unlawful.

Solicitors brought a test case for the HIV and migrants organisations on behalf of a Palestinian former asylum seeker who is unable to return home and could not pay for treatment.

He was given the treatment he needed after the solicitors applied to court but the case went ahead anyway as a test case and to challenge to the government’s guidance.

At the High Court a year ago Mr Justice Mitting decided that refused asylum seekers could get free NHS treatment. His ruling was that migrants, including refused asylum seekers, are just as 'ordinarily resident' as any British person, and this entitles people to free NHS treatment.

Not lawfully resident

The Department of Health then appealed and now the Court of Appeal has overturned the High Court decision. The Court of Appeal rejected the High Court's approach, finding that refused asylum-seekers could not be lawfully resident in the UK. Anyone not lawfully resident cannot be ordinarily resident, and that means no right to free treatment.

However, the Court also decided that the guidance is unlawful because it fails to explain what hospital’s should do if a patient cannot pay for treatment and cannot return home immediately.

The solicitors are considering whether to appeal to the House of Lords or not, and would need the House of Lords permission to make an appeal. 

In the meantime there is likely to be confusion about how to apply the judgement and the new guidance. The Department of Health has wasted no time in telling NHS Trusts to follow the Appeal Court's ruling.

Reactions to ruling

Solicitor Adam Hundt of Pierce Glynn, who took the case commented:

“The Dept. of Health guidance said that hospitals should not provide treatment unless patients paid for it in advance, but this ignores the fact that many of these patients, like A, are destitute, and many cannot return home, so they are not treated until they require life-saving treatment. In my experience, sadly, by that time it is often too late, and that treatment is usually far more expensive, so the current rules don’t make clinical, economic or humanitarian sense, and I am glad that the Court has recognised this. I hope that the Dept of Health will now make it clear to hospitals that they must treat patients who cannot pay and cannot return home for the time being - and not just wait until they are at death’s door.” 
 

The decision disappointed refugee and health welfare groups. Donna Covey, of the Refugee Council, said she was concerned that the charging regime for failed asylum seekers was still in place. She said those people who were unable to go home straight away often ended up destitute and homeless. "To refuse treatment to them simply because they cannot pay for it is appalling and inhumane," she said.

Deborah Jack, of the National Aids Trust, said anxiety over medical bills would deter many people from seeking the care they needed. She said the government should use its review of healthcare charges to end its policy of ill-health for the most destitute.

Department of health advice letter

The Department of Health has issued a letter to NHS trusts before the new Guidance is published in the autumn.

The letter says 

• Trusts shouldn't charge people treated free as 'ordinarily resident' for the period of time between the two court rulings
• people already on treatment are entitled to have it continued for free
• Trusts must always provide any immediately necessary treatment, including all maternity treatment. It's a matter for clinical judgement if care is 'immediately necessary.' HIV care could fall within this - especially if there is symptomatic illness, or CD4 count is low.
• Trusts must provide urgent treatment (which is treatment that isn't immediately necessary but which can't wait until the person can be reasonably be expected to return to their home country). This is likely to include HIV care under BHIVA treatment guidelines. It is a matter of clinical judgement whether the care is 'urgent'.
• Treatment should not be delayed or cancelled if the person can't pay for urgent or immediately necessary treatment.
• Trusts have the option to write off debts where it proves impossible to recover them, or where it would be futile to begin pursuing them, for instance when the person is known to be without funds (our emphasis - this will apply to most migrants with HIV).
• even non-urgent routine elective treatment can be provided depending on how long the person is likely to remain in this country - eg if the return home is not likely to be within a 'medically acceptable time.'
• immediately necessary, urgent and non-urgent treatment will require Trusts to assess when a patient is likely to return home based on "their plans, intentions or ability to do so."
• Trusts must not charge anyone identified as actual or suspected victims of human trafficking by either the UK Border Agency, or the UK Human Trafficking Centre. This is nothing to do with the Appeal Court, but because the European Convention on human trafficking came into force on 1 April.
• can't now bill the person's local Primary Care Trust for treating any people who are "chargeable."

The Department of Health letter says they will update the Guidelines, as required by the Court, in the autumn. HIV and migrants organisations will be pressing for a practical, humane approach.

People living with HIV in NW England who have problems with treatment charging for hospital care should always contact our services team.

The Appeal Court's ruling