HIV - Care

You have HIV and are receiving care at a HIV treatment centre. You can find information about this HIV care here. What is involved in the daily use of HIV-inhibitors? What side effects are known and how do you decide if you want to change from one combination to another? What can you expect from the treatment centre and what can you do if you have complaints about the care.

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HIV treatment

HIV doesn’t stop you leading a long and healthy life. It is, and always will be, important to go to the hospital for check-ups, even though you don't feel sick. So you can start your medication in time and the HIV doctor can monitor whether the medication is working, and not giving side effects.

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Clinical appointments

During a clinical appointment, you discuss your health with a doctor and/or nurse. Sometimes you go there with a complaint or a question, and sometimes you ‘just’ go for a checkup. This can take some getting used to at first, but it becomes routine after a while.

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HIV medication

There are many different types of HIV medication, and new HIV medicines are being developed all the time. The current medication is effective and safe. However, some people suffer from side effects, so switching to a different medication may be a good idea.

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Medication in practice

You may find it hard to get used to taking medication every day. But to stay healthy, it is very important to take your pills properly. Try to find a way that works for you – in the morning or in the evening, with or without food.

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Changing HIV treatment

You want your HIV medication to work well. You want the medication to suppress the virus, to cause little or no side effects, and to be easy to use on a daily basis. Many people start with one HIV medication, then switch to another at some point.

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Side effects

All medicines can cause side effects, that includes HIV medication. No one wants to get a side effect from a medicine, but some people taking the medicine do get it anyway. Side effects are described in the medicine’s patient information leaflet.

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HIV and other conditions

But there are also conditions, not caused by the medication, that occur more frequently in people with HIV than in other people. They are called comorbidities. These include cardiovascular disease, kidney and liver disease, diabetes, mental disorders, cancer and osteoporosis. People with HIV are at greater risk of developing these conditions, but that does not mean that everyone with HIV will get them. Extra vigilance is called for, though.

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Research

There are many ongoing studies on people with HIV. Research on how the virus behaves, on new medication, on cures, on mental health, on stigma, and so on. You will probably be asked regularly to participate in research. What are the reasons to participate or not participate in research?

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HIV care for children

In 2019, there were approximately 200 children (0-18 years old) in the Netherlands, known to be living with HIV. Of the children known at our HIV treatment centres, about two thirds were under 12, and about one third were between 12 and 18 years old. Most of the children in the Netherlands with HIV were adopted.

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Complaints about care

Something has gone wrong during treatment by a healthcare professional. You wonder if what happened is right. You are angry, disappointed or dissatisfied. You have the right to file a complaint or ask for a second opinion.

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Right to care when not insured?

Everyone has a right to medical help, even when they are briefly or temporarily uninsured. However, health professionals or financial administrators might question whether they should provide HIV care to people without health insurance. HIV care simply must be provided.

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