Issues of working with HIV positive refugees and asylum seekers

VerdaTraining Session:

Badru Male and Linda McDonald

This is a transcription of the training session on access to treatment that was given to the UK-CAB by Badru Male and Linda McDonald. Reading material for this meeting and the slide set are on the i-Base website. Report edited by Simon Collins.

The slide set accompanying this talk are available to download

Introduction

Badru Male: I work as a community health promotion specialist in Brent and Harrow and I have been working in HIV field from mid 1990s. The problem then for African communities was over access to HIV treatment. They didn’t take treatment, they were worried about being guinea pigs, and preferred to pray to overcome health problems.

I would encourage them and advocate for access to treatment and trial drugs. As advocacy progressed people started treatment and then the focus became adherence. Now we are back to access issues – and lobbying authorities for treatment for a new group of people who need it, namely asylum seekers, immigrants and other non UK-citizens who are in the UK. Working in this field we say that laws change frequently – like a chameleon – changing to suit the environment.

Linda McDonald will lead this training. She is clinical nurse with a law degree. She works at a unit with 300 HIV patients at Central Middlesex Hospital, 90% of who are African, and 70% of those are asylum seekers.

Linda McDonald: This talk will cover aspects of access to HIV care for refugees, asylum seekers, overstayers etc. The definitions and law suggest that legal access to treatment is available but interpretation of the law is key – and there are many different access realities.

Definitions

A refugee is defined in the Refugee Convention, article 1A as:

A person who has a well-founded fear of persecution for reasons of race, religion, nationality, membership of a particular social group or political opinion and who is outside the country of his nationality or formal habitual residence and is unable or, owing to such fear, is unwilling to avail himself of the protection of that country or return to it.

This is basis used by authorities but the onus is on the individual to prove this and many people arrive from abroad without papers so it is difficult to do this unless they previously has a high profile in their own country.

An asylum seeker is defined as someone who is:

  • in the UK
  • is a refugee as defined by the refugee convention
  • and refusing the application would mean returning to a country where their life or freedom would be threatened….

Asylum can be clamed by refugees or directly (before being given refugee status).

Article 3 of the Human Rights Convention states:

An asylum seeker who would suffer torture or inhuman or degrading treatment or punishment if returned to his/her country of origin, should not be expelled from the UK.

For many HIV-positive people in the UK, this includes being returned to a country where they will not receive treatment, and where without this treatment they will die.

The Home Office accepted a recent case of a man from St Kitts who was granted leave to stay on grounds that he wouldn’t have access to treatment in his home country. The argument was that as he couldn’t access treatment in his country of origin, returning him home would endanger his life, which is inhumane. However, the authorities are getting harsher in the interpretation of availability of services. If there is officially any access to treatment in a country it is used as reason to deny stay in the UK. But many governments only make drugs available to a few people, and it is very common for this limited treatment to be for members of the government or the army. In practical terms cost means treatment is not available to the majority of the population.

Even when limited treatment is available there is rarely the infrastructure such as access to viral load and cd4 monitoring, support for side effects etc.

More individuals are now being refused leave to stay on compassionate grounds and the reasons that the UK government makes such an issue of this include:

  • cost
  • many entrants form Africa are HIV-positive
  • cost escalated (drugs and care)

To submit a case that is likely to be successful you need good lawyer that is aware of any recent policy changes.

People who are eligible for treatment if they are:

  • a permanent resident in UK
  • a student longer than for longer than 6 months at a recognised college
  • a refugee or asylum seeker who has made an application
  • if they are in a holding centre
  • have diplomatic status
  • or are from a country with a reciprocal healthcare agreement

People who are not eligible (for HAART) include:

  • visitors
  • student on course <6 mo (or not on a recognised course)
  • applicants who have not filled in their papers yet
  • illegal immigrants and overstayers

Exceptions include:

  • if you need critical care – when you can get treatment to stabilise your health but not ongoing treatment
  • if there are public health reasons (ie some communicable diseases like TB but not HIV)
  • compulsory psychiatric care
  • district nursing, midwifery and health visiting should be free – but we hear of nasty cases in HIV-positive people where costs are tried to be reclaimed

This means that people are treated in hospital but then presented with a large bill when they are discharged and excluding treatment it costs approx £300 a day to stay in hospital. It can also lead to some people who have both TB and HIV being charged ‘in some hospitals’ for different parts of their care – and there is wide variation in how the rules are interpreted.

Some hospitals will argue for both to be free – others will not and because of the different interpretations it is important to phone first before recommended a hospital to a client.

The difference in interpretation arise because HIV care is affected by two different sets of conflicting regulations.

Under VD NHS 1982 regulations

  • HIV treatment should only be provided to those eligible to free care
  • HIV testing though is available free

BUT Under Venereal Disease 1976 regulations, which GU clinics work under

  • all treatment for STI’s is free
  • Patients can remain anonymous and do not have to give their names or address
  • therefore clinics should neither know or ask about asylum status
  • but that this only covers out-patient treatment

Because only out-patient treatment is included if they are admitted to hospital this protection is lost and often because of the previous safety people are very shocked when they arrive on the ward.

Some GUM clinics are very liberal and always provide treatment to HIV positive patients. Others will only give HIV treatment to eligible for NHS care.

Other cases we hear of include where people are asked to attend a GUM clinic with their papers and passport – note: this is not legal but is often being done.

Treatment status and asylum decisions may also become related. If someone has a high CD4 and is not on treatment this can jeopardise asylum application. This creates a pressure for people to start treatment early than they would normally do.

Registering at a GUM clinic using false personal details is not a problem for accessing care at first, but when using solicitors and asking doctors for letters of support for applications, this can cause confusion.

Ethical medical considerations that are sometimes raised to prevent access to treatment include:

  • whether it is good ethics to start treatment for someone who may then loose application to stay?
  • whether it is ethical to test pregnant mothers if they can’t then provide treatment
  • given high costs – is it ethical to provide treatment for all?

Q – Often the claim is that people are coming just to access HIV treatment, but this is not confirmed by data. For example the number of people applying from Zambia has been relatively similar for last 10 years but HIV-infection rates have increased in that country. More people are not applying to the UK just for access to treatment.

A- Yes, it is up to us to challenge these arguments – sometimes they are inaccurate, or biased, or just racist.

Q- We had a case from West African – from Chad which is a very poor country – who was not given leave to appeal – and was give the reason that Chad ‘likely’ to sign up to UN AIDS programme for treatment. Do you hear of this very often?

A-Yes, time and time again people are sent back to counties where we know that they will not get treatment. Some government get grants to pay for treatment but they divert the funds elsewhere. Publicly they say there is access to cover themselves. In Nigeria and Ghana treatment is only to armed forces.

Q- Is there a need for a lobbying campaign

A-All Party Parliamentary Committee is currently working on this – yes, to support and pressure. Biggest problem is interpretation – and variety between clinics – need to contact clinics prior to referral.

Q-Can you know how many people are refused?

A-Yes, I don’t know now, but it should be possible to find out.

Q-What is law for people working in UK?

A-It depends on whether if they have leave to stay and residence – if they just have temporary work permit then not officially, but could usually get treatment through a friendly clinic.

Q- There is often a reference to people targeting UK – rather than other countries. How does the UK compare?

A-It is easier in the UK. France, Portugal, Italy and parts of Spain are all more difficult places for asylum seekers to obtain treatment.

Q- For most people from the EU it is not such a problem, but increasingly French clients, are being interviewed, to confirm that they were originally eligible for care in France.

A-Yes, there is often a check to see whether they had right to treatment in that country

Q-Is this the case for all European Union citizens?

A-Yes, you need to prove that you have right to treatment in the country you came from – and having a French passport for example is not sufficient. GU clinics are ‘usually’ liberal, but a few are not. Some clinics arrange referrals to clinics that will treat.

Q-What about a campaign to government?

A-There is also a concern about very public campaigns that may prevent end up by preventing any access.

Many clients don’t understand these complicated legal differences and a bad experience at one clinic can put someone off from trying to access care again. Use support workers wherever possible to go with client.

Q- New legislation states that you have to apply at entry to get treatment. What if the person needs treatment later?

A-Once the Home office accepts a person, they are eligible for care. However, if they are being detained, this requires someone taking them to the hospital, Detention centres should have medical care but I don’t know what level of care is actually available. They may only have one nurse with perhaps no experience of HIV care.

Q-THT have had cases with detention centre in Oxfordshire, where people have come forward for HIV test, and then taken out of detention – so testing may be a good thing.

A-In this case yes, but it may still be difficult for people to access testing in detention centres.

Q-In Bristol there was a recent trawl of records, where people then charged for hospital appointments. Now HIV has been physically taken out of GUM clinic.

A-Larger HIV clinics should generally be ok, but this isn’t always the case for smaller clinics. It is not legal to look at GU hospital records for on basis of confidentiality. When clinics move from GUM it is really difficult. There are many cases where a bill is presented and the person then just disappear for good.

Q-In Scotland we don’t have so many financial managers breathing down neck. For people at risk of disappearing could they use a type of treatment passport?.

A-Yes – this is sometimes used – but then there is the problem of carrying something that shows they are HIV-positive, especially when they are in difficult shared housing situations. If registered under GU – then law says this is confidential. When receiving treatment there are also problems with large quantities of medication under difficult housing situation.

Q-Can you talk about dispersal?

A-Lot of clients are dispersed out of London. High court hearing a few weeks ago said this was legal on basis that NHS care is equal across UK. No account is taken of social support etc – and that case was dismissed. We get calls to our clinic from patients saying ‘I’m in Cardiff now’.

They are given no notice and often no drug supply – and these are people who are legally entitled to medical treatment. We then need to then find out where there are, and which is their local clinic, The problems this causes are very difficult.

Our worst case was women diagnosed HIV-positive when she was already 32 weeks pregnant, and who was then dispersed at 36 weeks to somewhere miles away. She just disappeared. Treatment was critical. She was linked to a clinic with no HIV experience and no HIV drugs – and ended up with only 3-days treatment before delivery. Immigration authorities said that treatment wouldn’t be a problem.

Clients also assume that letters from doctors will help, but often it makes no difference. With dispersal, the onus is on client to keep in touch. We actively warn that this may happen, and to contact as soon as possible so that we can arrange care in their new location. We also put people in touch with lawyers.

Q-Has anyone taken legal action or sued yet?

A-No, we are looking for a friendly lawyer, and a successful test case would limit dispersal.

Q-Have you followed the previous case?

A-This occurred only 2 weeks ago, and it will be a miracle if the baby is HIV-negative, but it may be possible.

Q- We have a few cases in Wakefield where people on treatment were in shared accommodation and we were able to get them transferred from private housing providers to local authority. We did education work with the local authority.

A-I expect this depends a lot on the individual local authority. Many are in debt themselves and there can be friction with social services but not always.

Q-In Edinburgh people can get rehoused relatively easily but often not to great housing – ie to the large housing estates. They have to have followed law for housing and need to have applied and have some sort of official status.

A-Local authorities have the power to help but not a duty, and it is at their discretion whether an authority provides services or not – and this relates to their resources. Changes in the law mean that this can often depend on the date of application and entry.

Q-We build a pack for case – and find that the home office website is good resource for information about access to HIV treatment in different countries.

A-Jeanette Meadway writes good reports on access in different countries.

Conclusion:

  • The diversity between NHS and GU regulations mean +ve individuals may not be eligible, but can access care through GU.
  • However NHS treatment is not free and will be tracked outside GU setting
  • Interpretation varies – always check before referral.

Q-Do you think there is a benefit from even a short term access to HAART?

A-If it is for six months then generally yes – if on ward they may sometimes get only few weeks, but this may still help.

Q-Is there any good news?

A-We have lots of new patients! We are also supported by other workers and organisations.

Q- How do you get round ‘uncertain’ status for dental treatment? We haven’t found a way to deal with this.

A-No, this goes on main hospital notes.

Q-What is your wish list?

A-For people to present early

  • to have access to lawyers
  • for clinics work together
  • for a direct link to immigration directorate – no one person has responsibility – and we her different stories on the same case depending on who we speak to
  • to stop dispersal policy

Appendix:

Notice of sessions of oral evidence

The UK All-Party Parliamentary Group on AIDS and the All-Party Parliamentary Group on Refugees are currently holding an inquiry to consider:

To what extent the UK Government can improve the lives of migrants with HIV and AIDS.

The Inquiry will form a report to be published before the Summer Recess with recommendations for Ministers. Four sessions of oral evidence have been arranged which interested parties are welcome to attend:

Tuesday 06 May 2003, 2:30pm-5.00pm

Committee Room 18, House of Commons

Theme: Introduction and Review of Current Issues Regarding Migration and HIV

Topics to be addressed: impact of current migration on public health, testing upon entry and access to NHS treatment
Speakers include: The Public Health Laboratory Service, the National AIDS Trust, the African HIV Policy Network, United Nations High Commission on Refugees (UNHCR), MEDFASH and the British Medical Association.

Thursday 08 May 2003, 2.30-5.00pm

Committee Room 19, House of Commons

Theme: How Current Government Policy Affects Asylum Seekers

Topics to be addressed: Dispersal, detention/reception centres and accessing services and benefits
Speakers include: Immigration Law Practitioners Association, Terrence Higgins Trust and the North East Consortium for Asylum Support Services.

Tuesday 13 May 2003, 2.00-4.30pm

Committee Room 19, House of Commons

Theme: Access to Healthcare and Treatment

Topics to be addressed: information access, support networks and cultural and language barriers
Speakers include: TBC

Tuesday 20 May 2003, 9.30-12.00pm

Committee Room 19, House of Commons

Theme: Integration into UK Society

Topics to be addressed: access to work, access to housing, access to education and ongoing issues in stigma and discrimination
Speakers include: TBC

The Committee Rooms are located inside the main estate of the House of Commons. Visitors must enter through the Saint Stephens entrance. For map, please visit: http://www.parliament.uk/commons/lib/colmap.pdf

For more information, please contact:

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Published: May 2, 2003
Last edited: December 19, 2010