Neurological Patient Groups Tackle COVID-19 Challenges

Last month patient groups and Members of the European Parliament pledged to “leave no-one behind” in their response to the COVID-19 pandemic. Advocates are outlining what that pledge might mean for people living with neurological conditions in particular.

The European Federation of Neurological Associations, or EFNA, sees a number of challenges facing people with dementia, migraine, stroke, epilepsy, Parkinson’s and Alzheimer’s and other neurological disorders.  EFNA highlighted several of those challenges in a recent webinar, whose presenters included the European Alliance for Patient Access.

Barriers to Neurological Care

While some patient groups are having trouble accessing medications during the COVID-19 pandemic, EFNA reported that patients are more often struggling to access support and services.  In recent months, the risk of virus exposure has led some facilities to cancel procedures, while reduced services in turn led some facilities to furlough staff.  In some cases, health care providers were deployed elsewhere to help manage COVID-19 cases.  

As a result, people with neurological conditions have not been able to proceed with neurosurgeries or thrombectomy, a procedure that removes blood clots.  Some patients have struggled to access ventilation and gastric feeding when needed for advanced or progressive diseases.  Caregivers have been stretched thin, trying to provide ongoing care with limited or no outside support.  

Meanwhile, some patients have deferred care due to fear of leaving their homes or visiting medical facilities where they feel they might risk exposure to the coronavirus.  These decisions may have been fuelled by widespread misinformation on social media or from other sources, EFNA noted.

Policy Solutions & Strategies

The good news is that policy solutions are within sight.  

In particular, EFNA pinpointed the need for:

  • An increased health budget from the EU, with spending commensurate to the needs of those living with neurological conditions
  • Coordinated action at the EU level, including an EU Union for Health
  • Better connectivity to bridge the digital divide that prohibits more widespread use of telemedicine for patients
  • Patient involvement in policy decisions beyond the COVID-19 pandemic.

EFNA has its own ideas for furthering these goals.  The organisation plans to equip patients and patient organisations with advocacy tools and educational resources.  EFNA also looks to collaborate with the European Brain Council on prioritising brain research in the next EU framework programme.  

With the coordinated effort of patient advocates across Europe, COVID-19 could offer a silver lining – spurring meaningful and long-lasting policy change for people living with neurological conditions.

Sign up to receive updates from GAfPA