Access to treatment for the undocumented in the Netherlands

by Juan Walter (MAHA international working group on immigrants rights and HIV)

Ladies and gentlemen,

Starting with my presentation, I will tell you how it is built up. At first, I will give you a short explanation of what we mean by ’undocumented’ in The Netherlands.

Afterwards, I will sum up some of the problems they have to deal with when they are HIV-infected. Then I will take you through some of these cases to illustrate the problems they have. Finally, I will make some statements on which we can open our discussions about this issue. It might bring us ideas about similar situations in other European countries. Also it may help us find recommendations and help us to make concrete solutions on accounting for undocumented people (especially the ones infected by the HIV-virus).

Talking about the ’undocumented’, we mean illegal aliens, people without a permit to stay in the European Community and Switzerland. The undocumented people, who have applied for asylum, for political or medical reasons, which have been rejected, these people have a tendency to go underground though fear of being deported. And therefore can no longer be accounted for by any form of government administration (hospitals, healthcare services etc.).

Now that we have defined this, let us overlook the situation of these undocumented people in general. Especially the ones carrying the HIV-virus, compared to those who are registered for an asylum or residents from other European countries.

Those that request for asylum:

• After officially applying for asylum at one of the registration centers, they are registered, and therefore an investigation is undertaken to determine their future status.
• During the time of determination they are entitled to proper medical care, decent housing and eventually satisfactory working conditions.

The European resident:

• A resident from the EC who wants to stay for a period more than three months needs a permit. They are validated for 5 years, while a permit in the case of an asylum demander is normally certified for one year;
• In most of the cases the European citizens are in the possession of a health care insurance in their home countries that it be private or government; E111 insurance policy, which is recognized throughout the EC. These insurance’s cover treatment in a hospital or a policlinic and in some cases even treatment with triple-medication.
• An exception is made for the people of Surinam, a former Dutch colony. The Surinam state care insurance will provide the necessary funds towards people from Surinam who have an illness that cannot be treated in their own country and therefore they are sent to The Netherlands for treatment on equal terms as any insured individual.

Even with explanations the confusion about the terms and rights to health care continues.

The undocumented:

• For the government they are not wanted, because of the effects on housing and high unemployment, which indirectly has a negative effect on the position of home citizens (for instance illegal aliens tend to work for lower salaries and don’t complain about work conditions);
• these problems can lead to ghetto-like situations;
• they have no access to insurance;
• these are some of the elements that help to degrade the health of these people and their immediate surroundings.

There is a diversity of problems, which I will sum up in a random order, but I consider them all to have the same priority.

• The undocumented without triple medication;
• The undocumented with triple medication;
• Social-work assistance for those undocumented living with the HIV-virus.

The situation regarding health care in the four biggest cities in Holland is unique. Due to auxiliary posts for people without health insurance (in Amsterdam they are known as ’de witte jassen’ en ’de kruispost’).

The general impression of the official organization is that the basic health care services are accessible for the undocumented immigrants. Because for first aid treatment people can go for help to the ER in general hospitals and not worry about government reprisals. The problems begin when the patient is in need for more specialized care. These problems have gotten bigger with the approval of the law named ’de Koppelingswet’ a few years ago.

What is ’de Koppelingswet’?

This is a law that connects the foreigner control registration office with the other government administrations, e.g. social securities, tax administration and population control administration. And therefore this creates a closed circuit which makes it practically impossible for illegal aliens to live decently in The Netherlands.

’De Koppelingswet’ allows only medical aid for undocumented if there is a case of emergency that is live-threatening or that causes invalidity or in a situation that is a threat to the general health of the population.

This law puts the responsibility with the physician, referring to the right to treatment and the right to treat a person as explained in a delicate situation, with the consequences of the patient and himself being pursued by the authorities. And further, it puts the financial consequences on the medical health care system and thereafter higher taxes for the registered population. This situation confronts the medical staff with a strange dilemma: must they give treatment to a patient with a beginning of a cancer, where the financial consequences are for the specialist and the hospital or the population through taxes? Or do they have to consider ’de Koppelingswet’ and take the decision of not giving this patient treatment, because he or she is not in a life-threatening situation at the moment. "Come back in a couple of years."

So keeping this in mind we can say that the undocumented HIV patient in The Netherlands who is in a life-threatening situation can be hospitalized without a problem. But that putting the patient on triple medication is out of the question, because:

• there is not a case of emergency that is life-threatening or that can cause invalidity or that the situation is a threat to the general health of the population, like in cases of tuberculosis;
• triple medication is too expensive;
• the supervision that is necessary for the treatment, is intensive and money costing.

It is difficult to estimate the exact number of undocumented and asylum demanders living with the HIV-virus. The reason for this is that the figures now in The Netherlands are not reliable. It is the presumption that in the 4 biggest cities of The Netherlands 40.000 to 80.000 undocumented are living. If we presume that 1 percent of them are living with the HIV-virus, than we can say that we are dealing with a group of 400 to 800 undocumented living the HIV-virus in The Netherlands.

Of the people living with the HIV-virus, the greater part of them don’t dare to go to an institution with their illness because they are afraid of reprisal and the consequences that may follow, e.g. prison, deportation. Others that have been treated, often seek help or reference with the HIV association of The Netherlands (HVN) for medication, because the hospitals are no longer able to provide treatment to these patients on account of ’de Koppelingswet’. De HVN has to often say "NO" to those who come for medication. Because they cannot provide medication since they don’t get enough donations from people who are also HIV positive, that no longer use certain treatments for their illness. The little medication that is donated is severely controlled for expired dates and the preceding stocking conditions. Even if people come for medication they need a prescription or have to prove they are already under treatment to obtain any form of medication. The prescription can be obtained from a doctor which is in close contact with HIV associations. It is very important that the association has sufficient stock to treat the patents, because to rupture a treatment, the consequences are more harmful to the result of the outcome of the therapy. Therefore monitoring of the treatment, is a must to obtain the wanted results. Or they can choose to go back to their home country, regardless of the risks and danger they might confront.

Here are some situations that illustrates the daily practice:

• A man from Tunisia, without official papers with a child, in immediate need of hospitalization, died. In the meantime the hospital will not embalm his corpse to send it back to Tunisia.
• A woman from Ghana, because of the consequences of toxoplasmosis was disabled, but has no chance to be put in a house for care, while she needs intensive daily nursing.
• A man from Peru, dismissed from jail without continuation of his triple medication. Gets a D-status with HIV printed on the document. Meanwhile he has got his A-status (the right to abode in Holland).

The reason of the existence of a secondary registration of the people with HIV, is due to the fact that not all the patients are cared for by a specialist. The GG&GD (the general municipal health service) has a task concerning the registration of the undocumented people living with the HIV-virus, and get a precise figure on their extent. Therefore a department is specialized in keeping the marks of the people without insurance, where local policlinics and auxiliary posts deliver their results. There is a great need for a central marking point, but in the meantime we have to be careful not to make the matter to official and avoid the consequence of closing down the few services that are available to illegal aliens.

To award the triple therapy towards a person or not, is daily practice, and in many cases depending on random factors, for example:

• In several hospitals in The Netherlands undocumented HIV positive pregnant women get access to double therapy in some cases even triple therapy. This has to do with preventing the vertical transmission of the HIV virus from mother to child. The reason for access to this treatment is due to the unborn child and therefore gives the opportunity for the mother to request a permit to stay in The Netherlands.
• Specialists handle different criteria toward prescribing a triple therapy. Here’s a situation right out of daily practice: "Two patients from the sub Sahara region of Africa, in a likewise situation, but only one gets a prescription for a treatment with the triple therapy. This illustrates the different opinion or proceeding of the specialist in charge. These sort of situations only lead to confusion and doubts and intense frustration.

I want to make two remarks here:

• 1. On individual cases it has succeeded on grounds of using the triple medication or therapy, to get people a permanent permit.
• 2. Guidance during a possible treatment with the triple medication is very important because:-
• Does the patient want to be treated with the triple medication?
• There were cases when the patient didn’t want to be treated with these medications.
• So do not hesitate to ask if in doubt before starting a treatment?;
• What are the plans of the patient in the near future?
• Does he or she for example want to go back to his or her home-country?

The problems that we have related are:

• Fear of an illegal resident being caught by the authorities.
• Distrust towards official and government institutions.
• Language and communication is often a big problem.
• Need towards mutual contact and support.
• Badly informed and unfamiliar with complicated health care systems.
• Lack of specialists and medication in specific areas.