As many international studies and also the german Ethikrat put it (https://cripples-unite.de/discrimination-unknown-poor-situation-germany-rare-disease/): having a rare disease means facing multiple problems resulting in total exclusion from constitutional rights:
1. the subsistence level is not covered;
2. many health costs have to be paid privately;
3. in addition transportation and travel costs to see specialized doctors;
4. and there are other costs, like home modifications, extra nursing costs.
Birgitta Wehner, who is suffering from Ehlers-Danlos Syndrome, hypermobile type, wants to bring these questions to court, even to the European Court of Human Rights (EGMR).
Most of the german judges do not acknowledge the special situation of rare diseasers, they overlook the above mentioned studies. They did not approve even a statement from an international organization for the disease in question, the Ehlers-Danlos-Society, „we recognise 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.) and not of the medical certificates which confirm the extra needs in nutrition, health care costs ect..
One court case is based on the problem, that because of money saving the german government had switched the payment of pensions from the beginning of the month to the end and that the rents were drastically reduced an can fall to 48% of the former average income. Persons who have to go on pension early because of disability face very low pensions and therefore have to go on additional welfare. Because as the first pension does come in only by the end of the month the welfare agency gives you a loan and which has to be paid back each month. This means that persons on welfare who have a pension will sink under the subsistence level while others without pension will receive the full amount. But already the subsistence level does not cover the additional costs for rare diseases. Because the subsistence level is orientated on the average need (and continuously calculated down, because so it pressures wages and keeps pensions down). This court case is one of others, which are based upon the violation of constitutional rights as the subsistence level must be instantly at disposal. More under: http://www.gegenmacht.net/das-erstrentenproblem-hat-gesetzgeber-noch-interesse-an-gerechtigkeit/
The judge of this case at the court of social justices sees no problem here, if the subsistence level of the severely sick is put further down.
The second court case is against the public support institution of the city state of Berlin, because, as there are no guidelines for the support of rare diseases, they regularly get support denied. Then they get a negative medical report written by a doctor who not only knows nothing about the disease but ignores the medical letters written by the experts. This court case is based upon the antidiscrimination law. More under: https://cripples-unite.de/berlin-antidiscrimination-law-to-no-avail-rare-disease/
The third is against the university hospital of Heidelberg, as here it is often the case with rare diseasers that due to the lack of research knowledge of interfamilial development of the diseases and comorbidities is important to have. With §630g BGB there is a paragraph which gives direct relatives access to a patient record if the former patient is dead. The university hospital of Heidelberg is the only one who until now did not give access. And the judge of the case wants to interpret the law in the sense that only partial access is given and only if the plaintiff can prove a positive therapeutic effect from the information. This is especially absurd when it comes to rare diseases because there the development needs to be studied first and then one can think about therapeutic approaches. Birgitta Wehner gained much helpful information on her disease from her fathers records and is determined to move on also with this court case.
Generally it is a problem with short deadlines made for lawyers. As legal aid is often denied by the judges who then have to judge the case and hope turning down the aid means one case less, Birgitta Wehner defends the case herself without a lawyer, but burdened with the consequences of a severe disease she often lies in bed. There are decisions that for acute sickness the case gets reinstalled after missing a deadline, for permanent diseases decisions are lacking. Especially poor people who can not afford a laywer are discrimininated here.
Another problem is, that the situation of a rare disease qualifies for existential hardship which means that judges have to be more accurate. This plead was constantly overseen.
The last case of hers is really sad, because the in the inheritance law the courts of Berlin made decided the facto, that a poor person is entitled to inherit a genetic disease, but not to inherit money. And not even the legal potion, because the german government has made fraud in inheritance cases very easy and an old testator burdened by rare diseases can be easily frauded. Usually the courts have to check testacy and to check this with several severe and rare diseases a medical expert is called, but in this case the judges decided without any knowledge that there was no problem with testacy. There were some more justice violating aspects in this case. More under: http://www.vulnerabel-rechtlos.de/
So in Germany rare diseasers do not reach there subsistence level, but shall also be prevented from inheritance.
Unfortunately this situation is hushed up- even institutions which should know or shall inform themselves remain silent, like ACHSE or the Institut für Menschenrechte. Pretty bad for a country whith such a history of extinction of the disabled as Germany has.