A Child Living with HIV: How to Prepare for a Move to Germany
What You Need to Know About Medication Supplies, Health Insurance, Finding a Specialized Clinic, and Family Support
We often hear the same questions from parents: Will there be a doctor for their child in Germany? Will they be able to get medication quickly? And what should they do while they don’t yet have health insurance? These concerns are completely understandable. At the same time, the most important task before moving is a practical one: to do everything possible to ensure that the child does not have to interrupt their treatment.
Setting up health insurance in Germany can sometimes take two to three months while the family goes through the registration process, waits for documents, or awaits a decision from the Jobcenter or Sozialamt. In some cases, things move faster, but it’s best not to count on it. Therefore, before leaving Ukraine, it’s advisable to obtain a supply of antiretroviral medications sufficient for at least two to three months.
If insurance has not yet been arranged and the medication is running out, the family will have to turn to services that assist people without health insurance. Such assistance is available in Germany, but finding the right pediatric specialist, obtaining a prescription, and getting the necessary medications can be difficult and inconvenient. It’s best not to let the situation reach the point where the child has only a few pills left.
Along with the medication, you should bring all medical records, recent test results, information on viral load and CD4 cell count, as well as the names of the medications and their dosages. Even if the documents aren’t translated into German, bring them with you anyway. It’s also helpful to take photos of the medication packaging so that a German doctor can accurately determine what treatment the child has been receiving.
Are there doctors in Germany who treat children with HIV?
Yes, there are. Germany has pediatric infectious disease specialists and specialized pediatric HIV clinics. They are organized into a professional network called the Pediatric Working Group on AIDS (Pädiatrische Arbeitsgemeinschaft AIDS, PAAD). According to the German AIDS Society, this network includes 14 pediatric HIV centers, 13 of which are affiliated with university hospitals.
There are indeed very few children with HIV in Germany. A 2015 study estimated their number at approximately 350 children and adolescents, and a long-term German cohort is currently monitoring more than 200 patients. Since the start of the full-scale war and the arrival of families from Ukraine, the composition of this group has changed, so the exact current number may differ.
Due to the small number of patients, such specialists are not available in every city. That is why, during the initial placement process, it is best to request that the child be placed in a large city or near a university children’s clinic. In a large city, it’s usually easier to find a pediatric infectious disease specialist, a specialized HIV clinic, an interpreter, and social services. In a small town, you may sometimes have to travel to another city for an appointment, tests, or a prescription.
Upon arrival, you should contact the nearest university children’s hospital as soon as possible and explain that the child is living with HIV and is on ongoing treatment. You don’t have to wait until the medication runs out. The sooner the hospital receives the documents, the easier it will be to organize follow-up care.
Where can families find support?
There is currently no single nationwide organization that works exclusively with children living with HIV and their families. However, there are organizations in Germany that assist Ukrainian families, migrants, and families with children who have chronic illnesses.
Sunflower Care e.V. in Berlin supports people from Ukraine with disabilities, neurodivergence, and chronic illnesses, as well as their relatives. The organization helps find doctors, navigate paperwork and the German healthcare system, can accompany individuals when visiting institutions, and assist with the translation of medical documents. The counseling center operates in Berlin-Neukölln by appointment. For more information: sunflower-care.org.
Kindernetzwerk e.V. operates throughout Germany and provides counseling to families with children who have chronic illnesses or disabilities. Counseling is free and confidential. Specialists can help you navigate the process after a diagnosis, find appropriate treatment, a specialized service, or a patient organization. Information about support is available on the government portal gesund.bund.de.
Caritas Migrationsberatung operates throughout Germany and provides free counseling to migrants and refugees on documents, social services, medical care, and other aspects of life in Germany. You can contact them in person or via a secure online consultation. The website is also available in Ukrainian, and responses to online inquiries are typically received within two business days. More information: Caritas Migrationsberatung.
Families can also contact us directly via datacheck.com.de. We’ll help you navigate medical and social services and arrange for telephone interpretation when you see a doctor.
A Child with HIV Has the Right to a Normal Childhood
It’s important for parents to know that they are generally not required to disclose their child’s HIV status to the school, daycare, club leaders, or other parents. This is confidential medical information.
A child living with HIV can go to school, make friends, play sports, go to the pool, go on field trips, and participate in group activities alongside other children. HIV is not transmitted through playing, hugging, learning, sharing utensils, using the restroom, or sharing sports equipment.
Moving with a child living with HIV does indeed require additional preparation. But the family doesn’t have to face these issues alone. A supply of medication, medical records, choosing a major city, and early contact with a specialized clinic will help make the first few months in Germany much more peaceful.