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.

Unlawful HIV+ Migrants Detention

posted: 19/04/2010

Two people with HIV are claiming that the Home Office (and UK Border Agency) are illegally failing to provide them with adequate HIV treatment and care while they are held in detention for months. The same solicitors who took the Department of Health to courts for charging refused asylum seekers and other migrants for their HIV treatment, Pierce Glynn, are dealing with these two cases.

HIV+ migrants detention not ' very exceptional'

Home Office guidance says that someone with a serious medical condition (like HIV) should only be detained if there are “very exceptional circumstances.” Despite this, the Home Office has failed to justify detention of either person as ‘very exceptional’. Additionally, the standard of healthcare provided in immigration removal centres falls well below that which is essential for people with a serious condition such as HIV. For both people, during many months of detention, their HIV treatments have run out several times, and they have not been taken to appointments with their HIV consultant.

These two cases illustrate the concerns raised repeatedly by HIV organisations and HIV clinicians. These Judicial Review hearings should take place in the next two months.

Released after 8 months
In a related case, the same solicitors, Pierce Glynn, obtained the release of another HIV+ detainee who was held for eight months, again with no exceptional circumstances to justify this detention. After solicitors letters threatened a judicial review, the Home Office released the person. The solicitors are now suing the Home Office for damages due to the lengthy and unnecessary detention, and their failure to provide appropriate medical care.

Source 
 

HIV+ Mother and Baby Loss

posted: 24/03/2010

The HIV positive mother of a 10 month old baby boy died two days after her own son, who starved to death. The real causes of the mother and baby deaths seem to be the mother’s mental ill-health and HIV stigma, along with missed opportunities and possible failings by health and social care services.
 

The 10-month-old boy wasted away in his pram at his mother's London flat where he was seen at least 15 times, in six months, by nine care professionals. Although experts were concerned about the child's deteriorating health, not enough was done to save the child, because officials and help were turned away by the mother.
 

The baby was found dead, emaciated and surrounded by rotting food on March 8 after a 999 call from his mother's council flat. The post-mortem showed his stomach was empty and he had not eaten for days. He had suffered a 'long period of malnourishment' and his weight had plummeted since Christmas by a third, to 12.5lb.
 

Interpreter refused because of stigma fears

Police began a murder inquiry and his 29-year-old migrant mother was arrested for child neglect. She had avoided contact with care services by saying her human rights would be breached if they used an interpreter to question her - in case the close-knit Eritrean community found out she had HIV. She was allowed to keep both her baby boy and his four-year-old sister.
 

Mum's failing mental health

There were concerns about her parenting skills, she was 'hearing voices' and had expressed fears for her baby's health. After her arrest she was rushed to hospital after only an hour, where she died two days after her son, from a rare brain condition linked to HIV.
 

George House Trust comment
 

This item is based on a Daily Mail news report (the only source we have found) that blamed health and children’s social services for the baby’s death.

We think that the real story is that

• The mother was seriously mentally ill with a rare HIV-related rare brain condition and seems not to have had treatment for this. Her own neglected long-term mental illness caused the child's neglect – like she neglected her own health, dying just two days after her son.
• The mother was very worried by HIV stigma and rejection by the local Eritrean community. So she refused to allow services to use any interpreter because she feared her HIV status would then become known among Eritreans.

There is not enough information to fairly judge whether health and social care services failed, because the Daily Mail's confidential information came from just one of many services that were involved. 

Lessons and issues

However it does appear that there are useful lessons to be learned from holding a multi-agency case review. It's not simply about 'what should have been done to protect her baby boy' but about meeting her own needs for mental health support and treatment. There are difficult ethical dilemmas - like everyone else she has autonomy, the right to decide about her own treatment and care. No-one can force competent adults to have treatment they don't want. But was she able to look after her own health when she was showing significant symptoms of mental distress? And should we use different rules when there is a baby involved? Why wasn't telephone interpretation provided (this would have protected her identity)?

This was a family of three in crisis for some months and only the baby seems to have been of concern - the whole family's situation and needs seem to have been overlooked.  

HIV stigma is dangerous

This is one more case demonstrating why challenging and ending HIV stigma, especially among vulnerable migrant communities, is so important.

Some more detail on the deaths and the events leading up to these

In September 2009, she was rehoused in London after moving from Birmingham after she was beaten up by her partner. A series of visits by health visitors and social workers from Westminster City Council followed. But despite a growing file of evidence that all was not well, nothing was done. The last visit to the flat in St John's Wood was made on March 1. A week later, the boy was dead in his pram. A neighbour said: 'We used to hear her baby and an older child crying all the time. On March 8 my son heard a scream at around seven in the morning.'
 

Two health trusts were responsible for the family. A confidential report by one of the trusts - the Central and North West London NHS Foundation Trust said: 'Post mortem results on the infant showed that he had no food in his gut at all and so had not eaten for several days at least. However, there is evidence of a long period of malnourishment.' But, after a nine-day investigation, the report concluded there are no lessons to be learnt.
 

Michael O'Connor, Westminster City Council's director for children and young people, said: 'Neither of the children were on the child protection register and there is no suggestion that they were at risk.'

Terry Bamford of Westminster's Local Safeguarding Children Board, said an independent serious case review would take place. Central and North West London Trust refused to comment and Imperial College Healthcare NHS Trust said it was carrying out its own inquiry.
 

Training for Councils - No Recourse to Public Funds

posted: 21/12/2009

A full day's training for councils on their legal duties to support people and families with ‘no recourse to public funds’ (NRPF) is provided by the NRPF Network along with London’s Islington Council. A significant number of migrants with HIV in NW England are subject to the No Recourse to Public Funds rules. Some NW England councils apply the rules very harshly or refuse to even accept they have any legal duty to assess people or help. Other councils do their duty well.

The training

• focuses on good practice in assessing and supporting people with NRPF
• provides an overview of relevant legislation and case-law and
• invites participants to explore other factors to be considered where immigration status impacts on entitlements to services in the UK.

Since April 2009, there have been 17 of these sessions for councils and voluntary sector organisations across the UK and the feedback is very positive.

The full details of the training days are on the NRPF microsite and any requests or enquiries can be made by email

In NW England councils vary widely in how well they perform meet their legal duties towards people with HIV under these rules.