Impact of COVID-19 on the mental health of people living with rare diseases

Subject: Impact of COVID-19 on the mental health of people living with rare diseases

COVID-19 has had an impact on many people’s mental health, especially the most vulnerable populations. Thirty million people are living with a rare condition in Europe, and the pandemic has caused additional stress for these people who may already be living in isolation, affecting their mental health. This is particularly concerning for many rare diseases causing cognitive impairment, for example Huntington’s disease. As Member States gradually return to normality, we must ensure that mental health is incorporated and prioritised in the multidisciplinary care for rare disease patients, such as those living with Huntington’s disease.

1. How can the Commission ensure that multidisciplinary care, including the much-needed mental health support for those living with rare diseases, is facilitated through European Reference Networks (ERNs) and adopted at national level?

2. What further steps does it plan to take to support Member States in incorporating ERNs as a key component of their national health strategies?

3. What other measures is the Commission considering to ensure that people living with a rare condition and their carers have access to the right mental health support? How is it planning on supporting Member States in implementing mental health strategies?

Answer given by Ms Kyriakides on behalf of the European Commission

(27 August 2021)

The EU established 24 reference networks for rare and low prevalence complex diseases (ERNs) (1) in 2017, based on Directive 2011/24/EU on patients’ rights in cross-border healthcare (2). One of these networks, ERN-RND, focuses on rare neurological disorders and specifically covers patients with Chorea & Huntington's disease (3).

Under the third Health Programme (4), the Commission supports Member States’ mental health priorities via the implementation of best practices (5) (6). A joint action (7) will implement a system reform to strengthen client-centred community-based services, and a multi-level national suicide prevention programme. A project to tackle depression and suicide (8) also kicked off in April 2021.

The high-level event on the mental health impact of the pandemic hosted by the Commission in May 2021 (9) addressed the needs of people with pre-existing health conditions, including rare diseases, and of informal carers (10).

To support stakeholders (also representing patients and carers), the Commission set up a virtual network on ‘COVID-19 mental health support’ within its EU Health Policy Platform (11).

The new Health Programme EU4Health (12) will support the transfer of practices to tackle COVID-19-related mental health challenges (13) and reward community-based initiatives alleviating their mental health impact (14).

⋅1∙ https://ec.europa.eu/health/ern_en

⋅2∙ https://eur-lex.europa.eu/legal-content/EN/TXT/PDF/?uri=CELEX:32011L0024&from=EN

⋅3∙ http://www.ern-rnd.eu/

⋅4∙ https://ec.europa.eu/health/funding/programme/2014-2020_en

⋅5∙ Via the Steering Group on Prevention and Promotion: https://ec.europa.eu/health/non_communicable_diseases/steeringgroup_promotionprevention_en

⋅6∙ Such as those submitted to the EU Best Practice Portal: https://webgate.ec.europa.eu/dyna/bp-portal/

⋅7∙ Expected to start in October 2021, with participation from 21 European countries and an EU fund of EUR 5 million.

⋅8∙ This EAAD-Best project involves ten European Countries and is co-funded by the EU with EUR 1.6 million, see

https://webgate.ec.europa.eu/chafea_pdb/health/projects/101018325/summary ⋅9∙ As held on 10 May 2021: see: https://ec.europa.eu/health/non_communicable_diseases/events/ev_20210510_en for conference report and video recordings of all

sessions

⋅10∙ Also via a testimonial of a carer of a young person with a rare disease

⋅11∙ This virtual community meanwhile brings more than ninety participants from over fifty organisations together, see: https://webgate.ec.europa.eu/hpf/

⋅12∙ https://ec.europa.eu/health/sites/default/files/funding/docs/wp2021_annex_en.pdf

⋅13∙ Via a call for implementation of best practices on the ground with direct impact on the effort to tackle mental health challenges during COVID-19, with a total

contribution of EUR 750 000.

⋅14∙ Community-based initiatives alleviating the mental health impact of COVID-19 will be one of two specific areas addressed and acknowledged via the 2021 EU Health

Award, with available prize money related to this topic totalling EUR 200 000.