Last Wednesday was World Refugee Day. In recognition of the specific vulnerabilities and frequent exclusion from care of displaced persons, refugees and migrants, this HATIP focuses upon the challenges, (and ethical responsibility), to provide HIV prevention, care and treatment services (within the context of an integrated programme of health services) to all people regardless of their nationality.
This issue depends heavily upon the 2007 Clinical Guidelines on Antiretroviral Therapy Management for Displaced Populations (GART-DP), developed jointly by the UN High Commissioner for Refugees (UNHCR) and the Southern African HIV Clinicians Society (which can be downloaded in full here)
“The refugee guidelines came out of a real sense that people were crossing borders and clinicians were having to deal with this in a practical way,” said Dr Francois Venter, President of the Southern African HIV Clinicians Society and part of the committee that drafted the guidelines. “Not only were they crossing borders, some were coming from a private practitioner to a public practitioner - a whole set of things which didn’t match.
So, for example, somebody would come from Botswana to Johannesburg with a hand full of tablets and I wouldn’t have those tablets. Or someone would say: I have no idea what my CD4 count was but I was on ARVs, and I ran out of them three weeks ago and I don’t have the packets. Or even worse: I come from the DRC, my CD4 count is 32, but I’m going back next week and I’m not on ARV’s."
“What do I do? Do I start them on treatment? Do I give them a supply of tablets to take with them? Do you simply write a letter? These are thorny issues,” he said.
The GART-DP was designed to supplement national guidelines on HIV care and treatment in order to help health workers to provide more appropriate prevention, care and treatment services to migrants and refugees. To illustrate some frequently encountered challenges, it includes a number of case studies.
One is Machozi’s story.
Machozi is a 28 year-old woman with no formal education from the eastern part of the Democratic Republic of Congo (DRC). A few years ago, she was taken hostage by a group soldiers, forced into “marriage” with their commander and raped repeatedly for several months. Eventually, she escaped and fled into Zambia, where she now earns a meagre living selling things in a small town market.
Machozi’s fate is all too common for displaced women and girls during or after times of war. According to a poster presentation by Dr Adedokun Olanrewaju, a Nigerian researcher, at the Third South African AIDS Conference: “Conflict situations put displaced persons, approximately 80% of whom are women and children, at an increased risk of sexual violence. Rape and other forms of sexual violence are frequently used as a weapon of war and terror against women and girls. Women and girls are vulnerable to abduction by armed forces where they may be held as sexual slaves.”
A changed risk of HIV
Earlier this year, Machozi began losing weight over a period of several months and broke out in an intractable rash. At first, she thought that another women at the market had poisoned her, but eventually she sought out a nurse who convinced her to have an HIV test. It came back positive.
The risk of HIV infection may be substantially increased as a result of forced sex in conflict situations. In fact, a study presented at the 2007 HIV Implementers Meeting reported that the HIV prevalence in the internally displaced population in the DRC was over two times higher than that in more settled trading communities along the Congo River (7.6% (95% CI 5.3-9.9) vs. 3.1% (95% CI 2.1-4.1)). After controlling for potential confounders, any symptom of sexually transmitted infection within the past year (Adjusted Odds Ratio [AOR] 3.6; 95% CI 1.4 - 8.8) and a history of forced sex during the conflict (AOR 4.2; 95% CI 1.3 - 13.2) were significantly associated with HIV infection in the internally displaced population.
“These findings highlight… the need for improved surveillance, coverage and targeted prevention, care, and treatment programs for internally displaced populations in the country,” said Andrea Kim of the US Centers for Disease Control.
However, people who flee their country may, ironically, be put at greater risk of HIV infection in the host countries — where the prevalence of HIV is often much higher (as in South Africa, for instance). It is important to note that within refugee camps there may be prevention services from international aid organisation and other factors (societal support networks) that may mitigate some of these risks.
However, outside of these settings and without the support of similarly affected people, migrant or displaced women and girls, in particular, are often at great socio-economic disadvantage, and may be sexually exploited or forced into coercive sex in order to survive. In addition, migrant men seeking work in the host countries’ mines and industries may be missed by prevention messages because of cultural and language differences.
HIV counselling and testing services
Providing HIV testing and counselling services to refugees, migrants and other displaced people may also be difficult. In addition to the general lack of awareness of testing clinics and HIV related stigma that commonly limit the uptake of all HIV counselling and testing services, according to a report from at a recent UNHCR hosted workshop (involving 31 representatives from southern African refugee Voluntary Counselling and Testing (VCT) services), services are often confronted by “inadequate counselling space and hours of operation, language and cultural barriers to counselling, lack of counselling skills for couples and youths, minimal IEC materials in appropriate languages, and lack of referrals and inadequate follow-up services” (Hanson).
In addition, displaced persons may have special concerns about confidentiality and disclosure. Although HIV status does not impact upon the legal status of a displaced person in the Southern Africa region, it can affect residency in many other countries (including most fundamentalist Islamic states and the US). Displaced persons may thus be anxious that disclosure of their HIV status could lead to imprisonment or deportation. “Some refugees may wish to remain anonymous for a myriad of reasons, including very real security concerns. It is up to the health worker to deliver care in a manner that does not put them or their families in danger,” according the GART-DP.
Better mobilisation and utilisation of counsellors from the refugee or migrant community may help inform policy around these areas. However, according to the UNHCR workshop, it is also extremely important that functional relationships be established with local services for referrals to ongoing services, including HIV care and treatment.
Receiving HIV care and treatment in host countries
Machozi was referred to a local ART site, where the doctor assessed her as having WHO stage 3 disease, prescribed cotrimoxazole and ordered a CD4 cell test. When her CD4 count came back at 124, the doctor decided to prepare Machozi for ART.
HIV services are generally better in the host countries — and according to the GART-DP, both international human rights law and the codes of medical practice indicate that “health workers who treat displaced persons [should be] guided by the same principles that govern the treatment of any patient before them, irrespective of nationality or ethnic origin, which include an intrinsic respect for human life and an oath to act in the patient’s best interest when providing medical care.”
Machozi was fortunate to be in Zambia, one of three countries in the Southern African region, along with Namibia and South Africa, that have specific policies indicating that HIV prevention, care and treatment services including antiretroviral therapy (ART), should be freely available to refugees, and asylum seekers through the public sector. Of the other countries in the region, only Botswana expressly forbids non-nationals from accessing its public sector ART programme.
But even in countries where these human rights are part of public policy, healthcare workers frequently deny access to care to refugees because of the perception that public sector services should first go to citizens. According to Laurie Bruns of the UNHCR, “Lack of awareness of the rights of displaced persons, together with xenophobia, can lead health professionals to deny care.”
“We’ve had lots of reports of healthcare workers stopping providing access to care for reasons which I think are spurious, as if it’s an ethical duty for them to not provide care to people,” said Dr Venter. “They were saying that about 150,000 people in South Africa are not South Africans. Let’s say 10% of them are HIV positive and 10% of them are in need of ART. That’s like in the worst-case scenario, 3,000 people in a country where 500,000 need ART in a year. You know, it’s such a drop in the ocean anyway.”
“There’s plenty of room within the system. In most of the sites now — in the big sites — there isn’t much of a waiting list. People have talked about this 30,000 patient waiting list but most of those patients are waiting for counseling. At most of the sites — like Gauteng for example — there’s no waiting time. So, they’re not piling anybody out."
"That’s where most of the patients are: they are here in central Durban, in central Cape Town and in central Johannesburg. And we’re saying: “It’s fine.”
Healthcare workers have a moral responsibility to see that people with HIV have equal access to care and ART. In countries where they are denied access to care through the public health sector, GART-DP recommend that migrants or refuges with HIV should be referred to NGO, faith-based or private sector ART programmes. Otherwise, they should receive the same evaluations and treatment as given any other patient within the national system. However, unique complications may arise.
Language and cultural differences
Because of the short time that the doctor had with Machozi and the language differences, he couldn’t be certain that she really understood everything he was saying — particularly in terms of adherence. A pill count of her cotrimoxazole showed that she had not been fully adherent.
“Counselling in an appropriate language and with due regard for cultural differences is crucial,” according to the GART-DP. And it is not a problem limited to Africa.
“On St. Maarten, we have over 80 nationalities living on a 34 square mile island. Pretty interesting, but not always easy to explain treatment, and compliance issues,” said Dr. Gerald van Osch of St. Maarten, and a member of HATIP’s advisory panel who has sought advice on providing adherence counselling with migrant and, sometimes, illiterate populations which also have a language and cultural barrier.
“I’ve worked a lot on it with colour coding, having the pills/containers in my office to visually show what they look like, pill-boxes, weekly filling of the boxes with the patients, medication lists, etc,“ he said. However, he stressed that often the patients who have language problems ironically are the most adherent.
Although counselling and adherence support materials in other languages can sometimes be found online, or from clinical trials or pharmaceutical companies operating in the country of origin, these translations are often too formal and literary to be of any practical use. This can even be a problem for recently produced materials within the same multilingual country.
For instance, according to a poster presented at the South African AIDS conference, translation has proven challenging for a trial in Soweto, where at least 11 languages are spoken: “As residents strive to communicate in this multilingual setting, grammar changes; new dialects are formed; and new words are invented. An example of the outcome of such processes is that the Zulu spoken in Soweto varies considerably from the Zulu spoken in predominantly Zulu areas of the country such as Kwa-Zulu Natal” (Radebe).
“We suffer from a very similar challenge to Dr van Osch,” said Chris Green, a treatment advocate with the Spiritia Foundation in Indonesia. “However, few doctors have the time to explain treatment to any patients; with usually 30 or more people to see every evening, there clearly is little time for explanation. The task of explanation is therefore taken on either by nurses (rarely), counsellors (sometimes) or peer supporters. The latter, in my view, offers the best solution, since they can be recruited from similar ethnic or language backgrounds as the patients.”
Cultural perceptions of illness and disease can sometimes pose an even greater challenge than language, said Green: “A bigger problem we face, at least in Papua, is that the indigenous population has no concept of 'sickness', of germs or infection. How do you explain the life cycle of HIV, and the rationale of resistance to such people? With difficulty! Even worse, one side effect of this cultural 'ignorance' is that in some communities sick people are viewed as 'bad luck', and this clearly adds to the stigma which naturally surrounds HIV infection and AIDS. Thus finding people living with HIV/AIDS willing to be open even with their peers can be very challenging.”
According to the GART-DP, using family or community members as interpreters can pose a risk regarding confidentiality and/or disclosure, and should thus be avoided if possible. It would be better to use an independent interpreter who has been trained in issues of confidentiality — if you can find one. In the case of refugees at least, contacting the local UNHCR office may help identify suitable interpreters.
ART considerations when the patient may return to the country of origin
Unfortunately, Machozi didn’t seem to understand and told the doctor that she had actually decided to return home to the DRC and so would not be coming back to the clinic. The doctor urged her to remain in Zambia for treatment but she said that if the pills were so important, then why couldn’t she simply take them with her? But if the doctor simply gave her the pills, would she have the sort of adherence support she would need where she was going? Furthermore, what if she developed serious side effects or immune reconstitution syndrome (IRIS), what sort of health service support would be there to manage her?
He asked her to describe the health care in her home village. She said that there was a small primary health care post with one nurse in a town about an hour’s walk away, but that it often had no medicines there and that it cost money to see the nurse.
The decision of whether to initiate ART treatment in a patient who may soon return to his or her country of origin is one of the most difficult choices confronting a clinician — and depends upon a careful risk/benefit analysis considering the particulars of that patient’s situation. Clearly the patient’s clinical condition is an important consideration — but the decision may require an assessment of what services are available in the patient’s home country.
On one hand, ART should generally only be started within the context of support services (including adherence support) and when sustainability is certain. However, according to the GART-DP, even a brief period of treatment “may allow them to access more sustainable treatment at a later stage… the ‘possibility of interruption should not be used by the health worker as a reason to deny access to care. Instead, strategies should be explored with the displaced person to find solutions.”
On the other hand, if the subject needs treatment now, but plans to return to their country immediately — and cannot be dissuaded from it —the conditions in the country of origin become much more important. For instance, if the country is still in conflict or the area has poor health care, no access to clean water and food insecurity, it may be unsafe for someone to initiate ART, especially because of side effects or risk of IRIS. In addition, poor patient readiness is another important factor to consider.
Considering Machozi’s current state of preparedness for ART, the uncertainty that lay ahead when returning home, and the poor level of the health care system [there], the doctor decided not to start Machozi on ART before [she left]. Instead, he advised her to try and seek out a non-governmental organisation’s HIV programme when she returned home. He gave her a 3-month stock of cotrimoxazole tablets, and reviewed again with her how to take the pills correctly. Finally, he wrote a letter describing her medical history and explained to her the contents of the letter.
Regimen choice and other practice guidance
Another key issue confronting a clinician providing ART to a displaced person is the regimen choice. For instance, if a displaced person starting ART intends to remain in the host country for at least a year, then the first-line ART choice in that host country would probably suffice; however, if the patient is returning to her host country soon, the regimen chosen should match as closely as possible, the corresponding regimen in the country of origin. Similarly, if a patient is already on ART, and the regimen is supported by the national protocols in the host country, then that treatment should be continued without interruption. If not, clinicians should make the best selection possible considering what drugs are available, and the patient’s history and use of concomitant medications.
Depending upon the regimen chosen, adherence counselling could be crucially important, especially if the pill count, tablets, refrigeration or dietary requirements change.
However, regardless of whether a patient claims be ART-experienced, displaced patients should receive the same preliminary evaluations that any new patient would receive including a confirmatory HIV test, CD4 cell count and viral load (depending upon the national protocol). However, these CD4 and viral load results may not indicate treatment failure if there has been a significant period of treatment interruption.
Other practical issues addressed in the guidance include the management of children, post-exposure prophylaxis, prevention of mother to child transmission, TB treatment and consideration for endemic diseases in the country of origin and the need for specific psychosocial support among displaced individuals.
Finally, the guidance closes by calling for greater advocacy. “Health workers should advocate for non-discriminatory medical practices” and to “play an active role in reducing discriminatory attitudes and dispelling myths regarding displaced persons.”
The UN High Commissioner on Refugees,
online at http://www.unhcr.org
Refugees and HIV/AIDS
MSF recently published a report on its experience of providing HIV treatment in a war zone – this is freely accessible in PLoS Medicine at:
Adedokun, O. HIV/AIDS In Conflict Settings: The Impact Of Effective HIV/AIDS Intervention. Third South African AIDS Conference, Durban, Abstract 66, 2007.
Radebe M et al. Trial Implementation Challenges in Multilingual Settings. Third South African AIDS Conference, Durban, Abstract 416, 2007.
Hanson B et al. Challenges And Solutions: Providing VCT In Refugee Operations. Third South African AIDS Conference, Durban, Abstract 98, 2007.
Kim A et al. HIV Infection Among Women Residing In Displaced And River Populations Along The Congo River, Democratic Republic Of Congo, 2005. The 2007 HIV Implementers Meeting, Kigali Rwanda, Abstract 131, 2007.