A/HRC/44/46/Add.1 58. Moreover, in order to protect older persons affected by Hansen’s disease from any type of abuse, it is necessary that the Government establish standards to regulate and monitor the work of caregivers and care providers dealing with issues related to Hansen’s disease. Training health-care workers to acquire structural competence (A/74/174) and overcome discriminatory and abusive attitudes should be implemented as a top priority, alongside the monitoring of health-care services and health-care delivery and ensuring the accountability of the health-care workforce, with adequate indicators. C. Responses from the health system to a rare disease 59. Hansen’s disease in Japan today has the epidemiological and sociological profile of a rare disease. This means that persons affected by Hansen’s disease encounter difficulties in obtaining an accurate diagnosis and proper treatment within the health system, and that accessibility and reasonable accommodation measures, as well as social protection strategies, are inexistent. This can ultimately hinder these persons’ full inclusion in society.29 60. The Special Rapporteur observed a significant lack of knowledge within the health system on key issues, such as: the therapeutic itineraries of persons with Hansen’s disease when seeking medical assistance; the complementary care needs of persons with Hansen’s disease, such as psychological counselling, prevention of impairments, rehabilitation or reconstructive surgery; and the psychosocial and economic impact of the disease. By the same token, the Special Rapporteur observed the inexistence of a formal referral system within the public health system. Moreover, according to private medical practitioners, very few medical doctors are qualified to diagnose and properly treat Hansen’s disease in Japan, which can result in delayed diagnosis and development of impairments and disabilities. 61. Hansen’s disease is a highly complex disease from a medical point of view and often requires multidisciplinary expertise and care. As is the case with most rare diseases, Hansen’s disease is chronic, progressive, degenerative and disabling. Given that it is an imported disease in the country, it might impose an additional burden on immigrants who may already suffer from the difficulties associated with their status, even more so in the event that their legal or economic situation may exclude them from the public health insurance system. However, given its history, Japan is well equipped to develop a multisectoral response to the epidemiological and sociological profile of Hansen’s disease as a rare disease in the country. It is therefore well equipped to implement guarantees with regard to the right to the highest standard of mental and physical health of persons with Hansen’s disease, which should include accessibility, availability and quality of multidisciplinary health-care services, alongside proper monitoring and accountability measures. 62. In order to preserve the very specific nursing and medical expertise on Hansen’s disease in the country, the Special Rapporteur suggests expanding the scope of the work of the relevant museums. This could include recording medical and nursing knowledge with a view to preserving it, but also training health workers on the specificity of the medical and nursing care associated with such a complex disease. Such a strategy might respond to the difficulties rare diseases impose on health systems, as Hansen’s disease does in any postelimination context. VI. Conclusions 63. Japan became a leading protagonist in the global elimination of discrimination against persons affected by Hansen’s disease and their family members by acknowledging the voices and the choices of all of those persons in the country. During her visit, the Special Rapporteur identified several good practices that are in place and provided advice on remaining challenges concerning the reparation schemes, the rights of older persons affected by Hansen’s disease and the guarantee of the right to 29 16 See www.ngocommitteerarediseases.org/wp-content/uploads/2018/05/NGO-CfRDs-Submission-TheRight-to-Health-in-Rare-Diseases_Feb-15-2018.pdf.