The German Institute for Human Rights criticised the continuing inadequate implementation of the UN Convention on the Rights of Persons with Disabilities in Germany (https://www.zeit.de/gesellschaft/2023-08/deutsches-institut-menschenrechte-un-behindertenrechtskonvention-mangel). The lack of inclusion in schools and the lack of payment in working places which are designed to employ handicapped persons, as well as the form of large residential facilities and the lack of barrier-free accessibility are rightly criticised. However, the poor situation of people with rare diseases and multimorbidiy is in Germany is still not acknowledged. Not even by specialised institutions.
First, Rare diseases are not rare. Due to the large number of over 6000 rare diseases, there are a total of about 3 million people affected in Germany (https://bcse.charite.de/).
And there are a number of studies, both national and international, that are analysing their difficult situation. It is therefore astonishing that this remains hidden even from the authorities who are dealing with it. For example, also the makers of the Berlin Anti-Discrimination Act (LADG), i.e. the SPD, PDL and the Greens, do not seem to have been aware that the court fees and lawyers’ fees to enforce the claim (at the regional court there is a lawyer’s obligation and only there such a lawsuit can be brought) can only be paid with difficulty from social welfare and welfare does not cover the costs for a rare disease and multimorbidity. The minimum of existence is based on the average and does not include the needs for chronic and heavy sickness.
So many of us on welfare or with low pension live under the minimum of existence, because one has to pay various treatment costs. That can include a special diet and also therapy as the health insurance focuses on widespread diseases.
There is a lot of discrimination for rare diseasers. They lack equitable access to care and thus face treatment inequality: https://cripples-unite.de/berlin-antidiscrimination-law-to-no-avail-rare-disease.
This was also pointed out by the Rare Disease Day 2023 “Everyone deserves equitable opportunities and access to health care. But for those of us with a rare disease, we are more likely to face misdiagnosis, treatment inequality and isolation!” (rarediseaseday.org a project by Eurordis, https://www.eurordis.org/).
“There are over 6000 rare diseases that are chronic, progressive, degenerative, disabling and frequently life threatening.” – writes the European Organization for Rare Diseases (Eurordis, Factsheet “Equity for people with a rare disease”, https://download2.rarediseaseday.org/2020/Factsheet_Advo cating%20for%20equity.pdf). Over 72% of rare diseases are genetic.
“Due to the rarity of each individual disease and scattered populations, expertise and information is scarce. In healths systems designed for common diseases, patients, face inequities in accessing diagnosis, care and treatments.” (Eurordis, Factsheet “Equity for people living with a rare disease”).
The vulnerability, poor supply situation and insufficient knowledge of doctors regarding rare diseases are also described by the German Ethics Council (Deutscher Ethikrat. Ad hoc Recommendation on Rare Diseases, https://www.ethikrat.org/fileadmin/Publikationen/Ad-hoc-Empfehlungen/deutsch/herausforderungen-im-umgang-mit-seltenen-erkrankungen.pdf). Here it is also described that qualified specialist institutions are often difficult to reach.
The German Ethics Council confirms that those affected are not only medically vulnerable, but also socially and economically.
The Eurordis rare barometer survey “Juggling care and daily life: The balancing act of the rare disease community” (https://innovcare.eu/survey-juggling-care-daily-life-balancing-act-rare-disease-community/) states that rare diseases have a severe impact on everyday life, that the time and care costs are significant, and that the resulting weaknesses and task accumulation increase the burden, with a strong overall impact on work-life balance: absenteeism, damaged careers and economic difficulties.
The Ehlers-Danlos Society states that for EDSers, they “recognise (that) our community’ s experiences of inequality when it comes to race, gender, sexuality, age, body shape, mental health, disability, economic situation and other diversity factors … many around the world face a diagnostic odyssey: years and sometimes lifetimes, fighting for recognition, diagnosis and care.“ (The power of patient-led global collaboration, Bloom et al., Am J Med Genet C Semin Med Genet, 2021 Dec;187(4):425-428.) The Ehlers-Danlos-Syndrom is a high burden disease with many co-morbidities.
A rare disease is permanently acute and fraught with the most severe circumstances. “Like other vulnerable groups, people with rare diseases are at risk of not adequately compensating for their burdens and their interests not being sufficiently taken care of due to their marginalised position. In addition to the general ethical principles of respect for self-determination, charity and harm prevention, the principle of justice, understood as justice of empowerment and distribution, is also of great importance in their case.“ Their burdens must be adequately compensated because of the principle of justice, demands the German Ethics Council.
Pity that all this is ignored by instititions who monitor and fight discrimination and by a nation who so ardently reclaims morals!