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Sickle cell disease and the healthcare system in Germany Sickle cell disease requires long-term treatment. Because it has so many effects and can affect any organ, it requires a treatment team of doctors from different specialties. Bringing in a new specialist often requires a referral. Prescription medications are commonly needed for treating sickle cell disease. The doctor gives you a prescription slip. You hand it in at the pharmacy to obtain the prescribed medications. 
To ensure that everyone affected and their families get the support they need to navigate life with sickle cell disease, there are numerous assistance programs available. These include language support, help with filling forms and making applications, culturally sensitive self-help resources, and lots more.
This section explains
  • what a prescription/e-prescription is and how to get the prescribed medication
  • What a referral is
  • Who treats sickle cell disease
  • Where to find information on treatment centers for sickle cell disease
  • How to get travel expenses reimbursed by your health insurer
  • When to apply for a disability card
  • Where to find additional support 
How does the German healthcare system work? 

Get answers to the most important questions about healthcare in Germany through the Migration and Health web portal of the Federal Ministry of Health. You'll find a variety of brochures and information resources in over 40 languages covering topics such as the German healthcare system, preventive health, child health, vaccinations, and more.

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What’s a prescription? If a treatment requires a medication that isn’t available over the counter at the pharmacy, your doctor will give you a prescription for it. Such medications are called prescription-only. You can get them at the pharmacy only if you present the prescription. It’s free up to the age of 18.1 Adults need to contribute ten percent of the medication price per pack, with a maximum of ten euros and a minimum of five euros.1 If the medication is cheaper, the contribution is lower too.1 For children under 12 and teens with developmental disorders (up to and including 18 years of age), health insurance may even pay for non-prescription medications.1 Learn more here. For some medications, the statutory health insurance doesn’t cover any costs. You have to pay the full price on your own.
Electronic prescriptions (e-prescriptions - “E-Rezept”) have been available in Germany for people with statutory health insurance since July 1, 2023.2 You can get the prescribed medication using your electronic health card (eGK) or the “E-Rezept” (e-prescription) app2, replacing the traditional pink paper prescription form. However, if preferred, the e-prescription can still be printed in the doctor’s office as usual.2 The form contains all the essential information about the prescription and a prescription code.3
Physiotherapy and psychotherapy can also be prescribed by the healthcare provider on prescription.
How to fill an e-prescription. Here’s how it works2,4 
  • With an electronic health card (eGK) – Insert the health card into a card reader at the pharmacy. No PIN is required. You can download your e-prescription from the e-prescription server. You will then receive the prescribed medication.  
     
  • With the e-prescription app: In addition to the e-prescription (E-Rezept) app, you need your eGK (health card) and a smartphone. A PIN from your health insurer is also required. Or, log in through the electronic health record (ePA) app. You receive the e-prescription directly on your smartphone. It can be sent to a pharmacy, or you can fill the e-prescription in person at a local pharmacy. 
    Tip: Get your e-prescription app (called “E-Rezept”) free of charge in the App Store, Google Play Store, or AppGallery. 

     
  • E-prescription as a paper printout: It is possible to receive a printout of the e-prescription in the doctor’s office. Hand it in at a pharmacy to get the medication. 
 
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Learn more about e-prescriptions here.The benefits of an e-prescription:5
  • It saves trips: If another prescription for the same medication is needed in the same billing quarter, there’s no need to go back to the doctor’s office. The prescription can be transmitted digitally directly to the eGK (electronic health card) or the e-prescription app.
     
  • Send to pharmacy: The e-prescription can be digitally transmitted to the desired pharmacy, ensuring the medication is ready for pickup or delivery.
     
  • Pick up medications (or have them picked up): With the eGK health card or e-prescription app, medications can be picked up for family or friends.
     
  • Family function in the e-prescription app: Insured individuals can manage the prescriptions of family members in their own e-prescription app.
Private health insurers are also planning to introduce e-prescriptions shortly.6
What’s a referral?

A referral makes communication between doctors easier. A referral form is often issued when a specialist needs to be consulted for treatment or when specific examinations are requested.7 The form includes the diagnosis, existing findings, and any prescribed medications.7 This helps prevent examinations being carried out twice or the prescription of medications that could have dangerous interactions.7 Afterward, the specialist informs the referring doctor about the findings and the further treatment.7

Source: https://www.praxisformulare.de/muster-5-und-6-abrechnungsschein/ueberweisungsschein A referral makes communication between doctors easier. A referral form is often issued when a specialist needs to be consulted for treatment or when specific examinations are requested.7 The form includes the diagnosis, existing findings, and any prescribed medications.7 This helps prevent examinations being carried out twice or the prescription of medications that could have dangerous interactions.7 Afterward, the specialist informs the referring doctor about the findings and the further treatment.7Who treats sickle cell disease?
Sickle cell disease is usually treated by specialists in internal medicine and hematology & oncology.8 These are doctors who specialize in treating blood-related diseases and organs.9 They also treat cancers of the blood.10 Some of these doctors work in offices, while others work in hospitals.
Ideally, treatment should be carried out at a specialized treatment center in close cooperation with a pediatrician or family doctor.11 The care you get in a specialized center is provided by a team, which may include:12
  • Doctors
  • Nurses
  • Social workers
  • Physiotherapists
  • Psychologists
In a specialized treatment center, everyone on the team is an expert in treating sickle cell disease.12 Regular visits to the treating specialist in internal medicine and hematology/oncology are crucial for monitoring the course of the disease.12-14 Complications can be detected early and treated immediately.12 The treatment team can also clarify questions about caring for your child with SCD and recognizing signs of an enlarged spleen, infection, or anemia requiring treatment.12 Additionally, in a treatment center, there are knowledgeable contacts for information on new treatment methods and the latest research findings related to sickle cell disease.
Where can I find information on treatment centers for sickle cell disease? Reimbursement of travel expensesThe treatment center or doctor's office may be far from where you live. In such cases, the illness (of a child) may result in travel expenses, which can be reimbursed by your health insurance provider upon application in compliance with section § 60 SGB V Travel refunds are a “discretionary benefit", meaning the health insurer is not obliged to cover every form of travel expense –  so be sure to apply for travel expense reimbursement before a scheduled trip.15 It makes sense to ask the health insurance about help with travel costs if the treatment center is situated far away.Disability ID

A disability ID card is meant to "compensate for disadvantages" in various areas of life. This compensation includes tax relief, such as reduced vehicle tax and a disability lump sum, special parking rules for cars, and discounts for using transportation ("mobility assistance") to help you get around, lead an active life and participate in events.16
People with disabilities also have special labor rights, including workplace selection and design, performance requirements, career support, entitlement to part-time work, and job protection. They are also entitled to extra vacation days.
Specific disabilities, health limitations, and compensations for disadvantages are indicated in the disability ID card using "indicator codes."

Individuals with a degree of disability (GdB) of 50 or more are considered severely disabled. They are entitled to a disability ID card. Anyone residing or working in Germany can apply for one.17 (for more information and a guide to applying for a disability ID card, visit the VDK website) 

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Support for people with disabilities and chronic illnesses is available here.

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Where can I find additional support?Living with sickle cell disease can be very challenging. It's essential to know where to get support – whether it’s tips on managing daily life with sickle cell disease, help filling out forms, getting health insurance benefits, compensation for disadvantages (school, training, university), or a disability ID card.
  • DRK-Wohlfahrt: provides assistance in a wide range of areas for refugees and other migrantsBeMig e.V . - Verein zur Förderung behinderter Migranten e.V. (Association for the Support of Disabled Migrants [based in Dortmund]): BeMig supports children, teens, and adults with physical, mental and multiple disabilities in all aspects of life. Helps migrants with integration into state support systems, offering comprehensive help to affected families.
  • BeMig e.V. - Verein zur Förderung behinderter Migranten e.V. (association in Dortmund) – Promotes the aid of children, adolescents and adults with physical, mental or multiple disabilities in all areas of life. The association sees itself as a bridge between migrants and the regular assistance system and offers comprehensive help for affected families.
  • InterAktiv e.V. Berlin (an association in Berlin) – provides childcare support and social counseling, assistance in caring for children, teens and young adults with disabilities; helping newcomers navigate the health, social assistance, and education systems; providing personalized social counseling, supporting migrants/refugees with disabilities/chronic illnesses and their families in their efforts to lead an autonomous life; also offers guidance and support for intercultural self-help groups.
  • Patient organizations/self-help groups
ReferencesBundesministerium für Gesundheit. Zuzahlung und Erstattung von Arzneimitteln [Federal Ministry of Health. Copayment and Reimbursement of Medicines] https://www.bundesgesundheitsministerium.de/zuzahlung-und-erstattung-arzneimittel.html  (last accessed: October 2023)Gematik. [Health Card Telematics Applications Company] Das E-Rezept für Deutschland [e-Prescription for Germany] https://www.das-e-rezept-fuer-deutschland.de/ (last accessed: September 2023) Gematik. So funktioniert das E-Rezept [How the e-Prescription Works] https://www.das-e-rezept-fuer-deutschland.de/so-funktionierts (last accessed: September 2023) Gematik. App E-Rezept [The e-Prescription App] https://www.das-e-rezept-fuer-deutschland.de/app (last accessed: September 2023) Gematik. Diese Vorteile bringt das E-Rezept [Benefits of e-Prescription] https://www.das-e-rezept-fuer-deutschland.de/vorteile (last accessed: September 2023) E-Health: „Der Online-Check-In ist für die PKV ein wichtiger Meilenstein“ [Online check-in is an important milestone in private health insurance] https://www.pkv.de/verband/presse/meldungen/e-health-der-online-check-in-ist-fuer-die-pkv-ein-wichtiger-meilenstein/ (last accessed: September 2023) Stiftung Gesundheitswissen. Ärztliche Überweisung – wann und wozu? [Health Literacy Foundation. Medical referrals - when and why?] https://www.stiftung-gesundheitswissen.de/gesundes-leben/patient-arzt/aerztliche-ueberweisung-wann-und-wozu (last accessed: September 2023) DocCheck Flexicon. Facharzt für Innere Medizin und Hämatologie und Onkologie [Specialist for Internal Medicine and Hematology & Oncology] https://flexikon.doccheck.com/de/Facharzt_f%C3%BCr_Innere_Medizin_und_H%C3%A4matologie_und_Onkologie (last accessed: October 2023)DocCheck Flexikon. Hämatologie [Hematology] https://flexikon.doccheck.com/de/H%C3%A4matologie (last accessed: August 2023)DocCheck Flexikon. Hämatoonkologie [Hemato-Oncology] https://flexikon.doccheck.com/de/H%C3%A4matoonkologie (last accessed: October 2023)Sichelzellkrankheit [Sickle Cell Disease]  https://www.kinderblutkrankheiten.de/erkrankungen/rote_blutzellen/anaemien_blutarmut/sichelzellkrankheit/ (last accessed: August 2023)Behandlung: Wie werden Patienten mit Sichelzellkrankheit behandelt? [Treatment: How are patients with sickle cell disease treated?] https://www.kinderblutkrankheiten.de/erkrankungen/rote_blutzellen/anaemien_blutarmut/sichelzellkrankheit/therapie/ (last accessed: September 2023) Society for Pediatric Oncology and Hematology. AWMF S2k guideline 025/016 "Sickle cell disease". 2nd Edition, 02 Jul 2020. https://www.awmf.org/leitlinien/detail/ll/025-016.html (last accessed: August 2023)Hoferer A et al Onkopedia Sickle Cell Disease Guidelines, version dated March 2021 https://www.onkopedia.com/de/onkopedia/guidelines/sichelzellkrankheiten/@@guideline/html/index.html (last accessed: August 2023)German Social Code Book 5 (SGB V) - Statutory Health Insurance (Article 1 of the Law of 20 December 1988, Federal Law Gazette I, p. 2477) Section 60 Travel Expenses. https://www.gesetze-im-internet.de/sgb_5/__60.html (last accessed: October 2023)Einfach Teilhaben. Ihr Wegweiser zum Thema Leben mit Behinderungen- Nachteilsausgleich. [Participation is easy: Your guide to living with disabilities - compensation for disadvantages] https://www.einfachteilhaben.de/DE/AS/Themen/Schwerbehinderung/Nachteilsausgleich/nachteilsausgleich_node.html (last accessed: October 2023)Sozialverband VdK Deutschland. [name of a large German charity] Fragen und Antworten rund um den Schwerbehindertenausweis [Disability ID Questions and Answers] https://www.vdk.de/deutschland/pages/themen/behinderung/9196/der_schwerbehindertenausweis?dscc=essenc (last accessed: October 2023)
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