People living with SMA or providing care for someone living with SMA may face difficulties as this new coronavirus propagates. Leading experts in neuromuscular conditions are working with colleagues across Europe to learn from their COVID-19 experience over recent weeks.
We are gathering information, which will we share with you as it becomes available but more importantly, together with Eurordis, we are advocating for the specific needs of people living with a rare disease. Please read our statement on this.
The current novel coronavirus (COVID-19) outbreak has led to a lot of uncertainty and questions, especially from families with children and adults who have a medical condition like SMA.
SMA Europe is gathering information from expert neuromuscular healthcare professionals to provide you with the latest information and advice, as it becomes available. You can find this in the paragraphs below.
Importantly, SMA Europe is actively advocating with Eurordis, a patient-driven alliance of patient organisations of which we are part, for the specific needs of people living with a rare disease during the COVID-19 pandemic. Two statements, which we endorse, have now been released:
Eurordis has also found, through an international survey they carried out over the past few weeks, that 9 out 10 people living with a rare disease is experiencing interruptions in care due to COVID-19.
Coronavirus disease (COVID-19) is an infectious disease caused by a newly discovered coronavirus called severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2).
Coronaviruses (CoV) have been identified as human pathogens since the 1960’s. Coronaviruses infect humans and many other vertebrates. Illness in humans manifests itself mostly through respiratory or gastrointestinal infections, however symptoms can range from the common cold to more severe lower respiratory infections such as pneumonia . They have emerged in recent years to cause human outbreaks, such as the Severe Acute Respiratory Syndrome (SARS) in 2003 and the Middle East Respiratory Syndrome (MERS) since 2012. Although
COVID-19 began in December 2019 in Wuhan, China and has since spread to other parts of the world.
It is not know exactly how this virus spreads from person to person. In humans, the transmission of coronaviruses between an infected individual and others can occur via respiratory secretions either:
The most common symptoms of COVID-19 are:
Some patients may have aches and pains, nasal congestion, runny nose, sore throat or diarrhea. Other associated symptoms can include loss of taste and smell. These symptoms are usually mild and begin gradually. Some people become infected but don’t develop any symptoms and don’t feel unwell. Most people (about 80%) recover from the disease without needing special treatment. Around 1 out of every 6 people who gets COVID-19 becomes seriously ill and develops difficulty breathing. Older people, and those with underlying medical problems like high blood pressure, heart problems or diabetes, are more likely to develop serious illness. People with fever, cough and difficulty breathing should seek medical attention.
Leading experts in neuromuscular conditions are working with colleagues across Europe to learn from their experience over recent weeks. They have reached the following conclusion:
All people (children and adults) with a diagnosis of a neuromuscular condition and their carers should consider social distancing at this time. However, those caregivers and family members who live with, or regularly visit, a person living with SMA, should also follow the recommendations outlined below to reduce the chance of bringing COVID-19 infection into the home:
At this time, there are no specific vaccines or treatments for COVID-19. However, there are many ongoing research initiatives. For example at the University of Oxford: Mapping, vaccine development, drug repurposing and trials.
In terms of treatments, chloroquine and hydroxychloroquine are being used in the context of the ongoing pandemic for treating patients with COVID-19 and investigated in clinical trials. Recent studies however, have reported serious, in some cases fatal, heart rhythm problems with chloroquine or hydroxychloroquine, particularly when taken at high doses or in combination with other drugs. The European Medicines Agency has issued a communication, warning that clinical data are still very limited and inconclusive and the beneficial effects of these medicines in COVID-19 have not been demonstrated. Results from large, well-designed studies are needed to make any conclusions.
How the virus impacts the SMA population is currently not known nor if the community is at an increased risk of serious disease.
People with chronic diseases, including neuromuscular disorders, such as spinal muscular atrophy, should take extra precautions to minimise the risk of getting COVID-19. The Association of British Neurologists indicates that people living with Type 2 SMA are at high risk as are Type 3s high if FVC is less than 60% or if using BiPAP (usually nonambulant).
Our experts are working together to learn from their COVID-19 experience over recent weeks. We will share information as it becomes available.
If you are concerned about Spinraza™ administration, please contact your study/ administration site as the situation may vary from country to country.
Biogen issued a community statement on 24th May stating that:
If you are concerned about the status of your current participation in clinical trials or about Spinraza™ administration, please contact your study/ administration site.
Access to COVID19 vaccines will differ throughout Europe as approval is granted. The United Kingdom (UK) is the first to have approved BNT162b2, a COVID19 vaccine developed by Pfizer/BioNTech. Please read how our member, SMA UK, is working to ensure access to people living with SMA and other muscle-wasting conditions. We also highlight a stakeholder meeting to be held by the European Medicines Agency (EMA) this Friday, 11th December 2020, ahead of approval in the European Union.