Kohte, Anna

Schmidt, Lara

English

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1/5Expert Interview: COVID-19 and the Rights of Peoplewith Rare Diseases in the EUjean-monnet-saar.eu/17.09.2021The interview was conducted by Dipl. Jur. Anna Kohte with Dipl. Jur. Lara Schmidt1. COVID-19 and the rights of people with rare diseasesQuestion: People with pre-existing medical conditions are among the most affectedgroups in the pandemic. Many are at increased risk of a severe course of infection andare at the same time particularly affected by pandemic-related restriction measures. Whatdifficulties do people with rare diseases face specifically?Answer: The impact of the Covid-19 pandemic has arguably caused great difficulties forall those affected by a chronic disease, especially those living with a rare disease. Adisease is considered to be rare if it affects no more than 5 in 10,000 people in Europe.  Itis estimated that there are about 30 million people affected across the EU. Even beforethe pandemic, those affected were particularly vulnerable not only medically, but alsofrom a social and economic point of view. This is even more the case when one considersthat rare diseases are often genetically caused and therefore many children are affected.As a result of the pandemic, people living with rare diseases are now in a situation thatgoes far beyond the individual risk of suffering a severe or even life-threatening Covid-19infection. They are particularly exposed to structural problems in the health care system:These diseases are often medically very complex, and due to a lack of qualifiedspecialists, these patients have no established pathway through the national healthsystem. This is reflected in their overall quality of medical services, from diagnosis totreatment and care. Hence the healthcare of people with rare diseases already poses asignificant challenge under normal conditions for all involved. The effects of the pandemicon the health care structures lead to major additional health risks. This even applies tothose affected living in Germany and Europe, whose medical care situation is quite goodcompared to the world‘ s average. In particular during the first year of the pandemicimportant treatment measures were cancelled and check-ups not performed becausecapabilities were reserved for the pandemic. Professional care providers were alsounable to carry out their work due to a lack of personal protection equipment and carematerials. Consequently, these activities had to be performed by private caregivers –mostly by family members who were already under great stress.  In short: All the systemdeficiencies revealed by the pandemic have in one way or another affected those who areliving with a rare disease. These extra burdens are indeed related to the pandemic. Butthere is also a systemic cause: people with rare chronic diseases are unfortunately stilloften forgotten in political decision-making. In Germany, for example, caregiving relativeswere initially not adequately considered in the prioritization of vaccinations. Thoseaffected were also left alone with regards to information on the general possibility ofvaccinations for a rather long time. Recently, there is a fear that those affected who[*]2/5cannot be vaccinated for medical reasons will be once again forgotten, or excluded, asthose that have not been vaccinated or recovered from an infection can be refused entryand service in Hamburg, for example.2. A response at EU levelQuestion: The primary legal competence in the field of health protection falls to theMember States. To what extent can EU institutions (e.g. the European Commission)nevertheless contribute to safeguarding the rights of people with rare diseases in thepandemic?Answer: The EU’s objectives in the field of health do not always correspond to asufficient legal competence in the area, which was also noticeable in the pandemic. Inany case, there are no provisions for legal harmonisation in the area of health, not evenfor a pandemic. The Union’s legal competence in the health sector is explicitly limited tocomplementary measures, see Art. 168 TFEU. Nevertheless, the interdependenciescaused by European integration are stronger than one might think at first glance.Particularly in the field of rare diseases, the quality of healthcare has improved greatly asa result of Union activities. As early as the end of the 1990s, the EU launched a healthpolicy action programme with a focus on rare diseases, which has drawn a lot of attentionto the „rare community“. A 2009 Council Recommendation then initiated National ActionPlans for people with rare diseases in the Member States and led the path for medicalcentres of expertise and European reference networks. The EU regulation to promote themarket introduction of so-called „orphan drugs“, i.e. medicines specifically for rarediseases, was also important. With regards to EU actions in the COVID-19 crisis inparticular, everything that helps to combat the pandemic and its negative effects on healthcare systems and improves the medical as well as the socio-economic and socialsituation of those affected is, in general, welcomed. For example, there have beenconcrete attempts by the European Commission to improve the availability of scarcemedical equipment in Europe by means of non-binding solicitations. There is also hope,that the “NextGenerationEU” reconstruction programme will improve the management ofthe economic fallout from of the pandemic and enable the Member States to invest intheir health systems. In any case, I am interested to see whether and how the debateabout more EU legal competences in the field of health, which has been brought upduring the pandemic, will have an impact in the future. What it has brought so far is apublic debate on options for action by the Union in a globalized world.Question: With regard to people who are disabled as a result of their rare disease, theUN Convention on the Rights of Persons with Disabilities of 2006, which is the first globaltreaty under international law to specify the rights of people with disabilities, is particularlyimportant. In addition to all EU Member States, the EU itself has also ratified the UN Convention onthe Rights of Persons with Disabilities. What does this independent ratification of theConvention by the EU mean in practice, especially in times of pandemics?3/5Answer: According to the UN Convention on the Rights of Persons with Disabilities (UNCRPD), people with chronic illnesses are first of all “impaired”. They are furthermoreconsidered “disabled” if they also encounter barriers and the interaction of impairmentand barrier “may hinder them from full and effective participation in society”. Therefore,not every person with a rare chronic disease is automatically disabled. However, inpractice the vast majority of those affected will be.The fact that the EU has ratified the UN CRPD independently is remarkable in itself, as itis the first time that the EU has become a party to an international human rights treaty. Interms of disability policy, the ratification marked a change of paradigm towards theunderstanding of the term „disability“ in a social and human rights context at a Europeanlevel. This had a signalling effect beyond the borders of Europe. From a legalperspective, EU actors are directly obliged to implement the contents of the Conventionand to uphold the human rights specified. Considering the distribution of legalcompetences between the EU and the Member States, an independent ratification by theEU was also necessary in order to ensure the comprehensive validity of the Conventionin Europe. Of course, what is important for practical implementation is that EU legal acts potentiallyhave to be measured against the UN CRPD and that the Convention becomes justiciablethrough the ECJ. Still, the independent ratification has also had an influence on theinterpretation of EU primary law, in particular Art. 26 CFR. The Union must also submit anindividual report on the status of implementation of the Convention. This will help togenerate meaningful data about the situation of people living with disabilities in Europe.Future reports will certainly also address the implementation of Conventions rights in thepandemic period. In this context, the guarantee of the highest possible level of health andcorresponding access to health services, as guaranteed in Article 25 of the UN CRPD,will be especially noteworthy. Still, it can be said that the practical enforcement of the Convention in Europe faces thesame difficulties as in Germany. Due to the Convention’s high level of abstraction and thehigh density of regulations at the same time, there is hardly any room for a directapplication of the Convention.  Only when it comes to discretionary decisions can the UNCRPD influence legal interpretations. In German law on aids and appliances, this is thecase with „basic needs“. The provision of assistive devices in accordance with theConvention must aim at full participation in society and must not be geared solely towardscompensating for disabilities. In this area, German courts already explicitly recognise theimportance of the Convention.Question: Criticism was voiced in Germany in particular over the fact that people withcertain pre-existing conditions were not sufficiently prioritised in the vaccinationcampaign. For example, people who have trisomy 21 were assigned to the secondpriority group despite the fact that the risk of a fatal outcome is just as high as for peopleover 80.  What opportunities are there at the European level to work towards inclusivenational vaccination strategies?4/5Answer: Indeed, especially at the beginning of the pandemic, the German vaccinationmanagement did not prioritise all chronically ill people according to their real risk ofbecoming severely ill with Covid-19. In fact, people living with trisomy 21 were onlyincluded in priority level 2 in the German draft of the vaccination regulations if they lived inan institution for people with disabilities. Relatives providing care and other assistantswere also not sufficiently prioritised at first. Fortunately, this later changed, also thanks tostrong civil engagement and advocacy. However, this could not always prevail, forexample when priority groups were opened up for certain professions at short notice atthe expense of people with high health risks. So there were potential reasons for EUinfluence. A possible approach could have been the joint vaccination strategy of the EUand the Member States. The European Commission had spoken out in favour of such astrategy early on and pushed it forward. However, the focus was on the procurement ofvaccines and simultaneous access to vaccines for the Member States. Within theframework of this voluntary cooperation, the EU should also have created steering effectson prioritisation issues and worked towards a consistent implementation in the MemberStates. The same applies to barrier-free access to vaccinations. Here, the EU shouldhave acted more as a multiplier.3. Disability Mainstreaming as a solution?Question: The German Institute for Human Rights recently published a position paper inwhich it calls for „consistent disability mainstreaming“ in pandemic response.  This isdefined as the systematic consideration of people with disabilities in all pandemicresponse measures.  At the global level, António Guterres, Secretary-General of theUnited Nations, has already called for disability mainstreaming in the pandemic.  How canwe imagine such disability mainstreaming in practice? Are there already examples ofthis?Answer: In the mentioned position paper of the DIMR, it was already criticised that thepersons affected were not sufficiently consulted in political decision-making processesduring the pandemic. However, the political participation of people living with disabilities isan indispensable component for realising a non-discriminatory and self-determinedexistence in all aspects of life. Participation is both a goal and an instrument for disabilitymainstreaming. Art. 4 para. 3 of the UN CRPD therefore rightfully obliges the statesparties to structurally include people living with disabilities in legislative processes.Representative organisations of people living with disabilities play an important role in thisregard. This applies even more to the area of people who live with a disability due to arare disease. In this field, a unique expertise is concentrated in disease-specific self-helporganisations. They offer affected individuals and their relatives a platform for exchangeand networking. “Rare people’s” organisations are also often the first point of contact onthe way to diagnosis as well as therapies and are excellently networked with specializeddoctors and therapists. They are also able to reliably identify and promote the needs andinterests of their members to the public. Health-related self-help makes those affectedvisible. Self-help is empowerment and serves participation. In this way, self-help alsoprovides the preconditions for disability mainstreaming. Politicians have understood thathealth-related self-help groups are indispensable consultation partners. However, the5/5representation of affected people as a whole still lacks reliable financial resources thatcorrespond to its responsibilities. Given the mentioned obligations under the UN CRPD,this is not a satisfactory situation. Europe also needs to get involved here. The EU has tomake full use of its possibilities in the field of engagement policy.Question: Can such disability mainstreaming actually be expected to improve thesituation for people living with disabilities because of their rare disease?Answer: To consistently involve people living with disabilities in decision-makingprocesses has the potential to prevent barriers from arising in the first place, instead ofhaving to correct deficient decisions or their effects in retrospect. If implemented in arealistic way, this can be expected to lead to a considerable improvement in the situationof people living with disabilities. Holistic „disability mainstreaming“, however, requires aprofound change in the way our whole society thinks. Personally, I think it is important torecognise that in many areas there may not be a simple and cost-effective „one fits all“solution. And yet these efforts must be made, because inclusion is not a favour, but aright. What I would like to see for people who live with a disability due to rare diseases isgreater visibility. As a potentially multi-marginalised group, they are particularly in need ofan inclusive process aimed at equal opportunities and participation. Lara Schmidt works as a legal expert at the Alliance of Chronic Rare Diseases(ACHSE) e.V. As an umbrella organisation of over 130 patient associations, ACHSErepresents the interests of those affected and their relatives in politics, society, medicineand science. The contents of the interview are her personal opinions and do notnecessarily reflect the opinion of her employer.[*]

Expert Interview: COVID-19 and the Rights of People with Rare Diseases in the EU

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Expert Interview: COVID-19 and the Rights of People with Rare Diseases in the EU

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