Huntington’s disease – the impact of COVID-19 on delivery of care

Subject: Huntington’s disease – the impact of COVID-19 on delivery of care

COVID-19 has placed unprecedented strain on European health systems and shed light on the need for more investment and better infrastructure. Rare diseases affect over 400 million people worldwide – more than cancer – including 30 million in Europe. Their unique, complex nature poses significant challenges for health and social care systems.

People with rare diseases such as Huntington’s disease experience significant delays in diagnosis, fragmented care and lack of access to treatment. This impacts Huntington’s disease patients, their families and carers, and health-related quality of life, on account of the high levels of support required to deal with increased disability (motor, cognitive and behavioural disturbances) and loss of independence. COVID-19 is exacerbating these challenges.

On the issue of Huntington’s disease, how is the Commission supporting national healthcare systems to:

1. improve access to the appropriate rare disease infrastructure, including high-quality care services, particularly given the new demand on healthcare systems as a result of COVID-19?

2. ensure that all individuals at risk of genetic disorders are able to access genetic counselling, regardless of whether they go on to have genetic screening?

Based on the lessons learnt from COVID-19, does the Commission believe that it should broaden the scope of its areas of competence in order to support Member States with rare disease infrastructure needs?

Answer given by Ms Kyriakides on behalf of the European Commission

(14 August 2020)

The Commission is working with Member States and international partners on all fronts to tackle the COVID-19 outbreak . Supporting health systems and health workers is among its key priorities (1).

EU action in the field of public health must fully respect the responsibilities of the Member States for the organisation and delivery of health services and medical care (2). This includes screening for genetic disorders and related counselling.

The Commission’s efforts in the field of rare diseases focus on supporting Member States’ policies, improving recognition and visibility of rare diseases, and developing EU cooperation (3), also to improve patient access to diagnosis, information and care.

European Reference Networks (ERNs) (4), (5) bring specialised healthcare professionals from across the EU together via virtual platforms to provide guidance on rare disease diagnosis and treatment. The Commission co-funds ERNs through the EU Health Programme (6) and Connecting Europe Facility (7) with further support foreseen from Horizon 2020 (8). In the EU4Health Programme (9) the Commission proposes more direct and increased funding of ERNs.

In April 2020, the Commission launched the COVID-19 Clinical Management Support System (10), organising webinars to support clinicians and other healthcare professionals. All ERNs also initiated specific activities (11).

⋅1∙ https://ec.europa.eu/commission/presscorner/detail/en/IP_20_468

⋅2∙ Pursuant to Article 168(7) of the Treaty on the Functioning of the European Union, see http://eur-lex.europa.eu/legal-content/EN/TXT/HTML/?

uri=CELEX:12012E/TXT&from=EN

⋅3∙ https://ec.europa.eu/health/ph_threats/non_com/docs/rare_com_en.pdf and https://eur-lex.europa.eu/LexUriServ/LexUriServ.do?

uri=OJ:C:2009:151:0007:0010:EN:PDF

⋅4∙ https://ec.europa.eu/health/ern_en

⋅5∙ https://eur-lex.europa.eu/LexUriServ/LexUriServ.do?uri=OJ:L:2011:088:0045:0065:en:PDF

⋅6∙ https://ec.europa.eu/health/funding/programme_en

⋅7∙ https://ec.europa.eu/inea/en/connecting-europe-facility

⋅8∙ Horizon 2020: call topic SC1-HCO-20-2020 ‘Coordination of the clinical research activities of the European Reference Networks ’

⋅9∙ https://ec.europa.eu/health/funding/eu4health_en

⋅10∙ https://ec.europa.eu/health/sites/health/files/ern/docs/cmss_factsheet_en.pdf

⋅11∙ https://ec.europa.eu/health/sites/health/files/ern/docs/covid19_erns_en.pdf






















| | )In April 2020, the ERN on Rare Neurological Diseases (12) co-organised for the first time in collaboration with the European Huntington’s Association a webinar (13) on COVID-19, to allow people living with Huntington’s disease to discuss with leading medical experts.

⋅12∙ http://www.ern-rnd.eu/ , this ERN also addresses diagnosis and medical expertise related to Huntington’s disease

⋅13∙ https://ern-euro-nmd.eu/webinars/