Posted - February 2021 in Living with HSP - Management & Treatment News
What are the issues?
The vaccination rollout – Phase 1a is underway
The first of 142,000 doses of the Pfizer/BioNTech COVID-19 vaccine was administered on 22 February with a total of 80,000 vaccinations happening by month end. These are going to priority recipients, called Phase 1a, comprising frontline quarantine and health workers who interact with returned international travellers, and aged and disability care staff and residents. In total, this phase will cover about 678,000 people, using around 1.4m doses of the Pfizer vaccine.
Compelling evidence for vaccination
The vaccine is free and voluntary, with an unprecedented-in-human-history volume of compelling medical evidence globally supporting the safety and effectiveness of approved vaccines. There may be good reasons not to vaccinate in individual cases and these can be determined by one’s own medical professionals, however there is no scientific evidence to support the arguments against vaccination.
Phase 1b rollout will include many with HSP
The next stage of the rollout, Phase 1b, will include many with HSP based on the criterion “adults of any age with underlying medical conditions which make them vulnerable to the virus”. This phase also includes the following groups: everyone over 70, other healthcare workers, Aboriginal and Torres Strait Islander people over 55, and certain high-risk workers including army, police and those working in meat processing plants. This will cover around 6.14 million people and use up to 14.8m doses of mostly the AstraZeneca vaccine.
How will it work
Whilst the details are not yet finalised, authorities at state and federal level have said that priority groups will be “identified … based on your level of risk and invited to register for a vaccine, if you wish to receive one”. Reference has also been made to a “national booking system” for vaccination. Federal Health minister Greg Hunt said “Our goal for the public is to have a very simple access approach. So, you can phone your GP, you can phone the state clinic, or you can come through a single front door”.
Concerns for the disability community
Some disability advocates believe that the live-at-home disability community may be somewhat overlooked, especially those with significant mobility constraints and the challenge of going to get vaccinated, which is arguably the case for a not insignificant chunk of the HSP community. No plans have been announced to date to address this challenge.
We did a Q&A with neurologist Dr Kishore Kumar of Concord Hospital in Sydney, who is well-versed in HSP:
Q: Dr Kumar, how vulnerable to the coronavirus are people with neurodegenerative conditions in general, and HSP specifically? How is vulnerability conditioned by factors such as disease severity and age?
A: I could not find any specific evidence of HSP being more vulnerable due to COVID-19, but this is probably because HSP is a rare disorder and researchers have not had time to collect the evidence. Those with complicated HSP (e.g. swallowing or memory problems) may be more at risk of severe COVID-19 than those with pure HSP.
People with Parkinson’s disease are at high risk of developing complications of COVID-19 when their disease is advanced. Recent advice suggests that the benefits and risks of COVID-19 vaccines do not appear to be different in Parkinson’s disease compared to the general population (COVID-19 Vaccination for Persons with Parkinson’s Disease: Light at the End of the Tunnel?, Bloem et al., J Parkinsons Dis).
Certain factors are known to be linked with death, severe disease, or admission to ICU for COVID-19 in the general population (Risk factors for severe illness and death in COVID-19: a systematic review and meta-analysis, Degarege, medRxiv):
chronic respiratory disease
older than 60.
My assessment is that if you have another one of these risk factors you may be particularly at risk. People who are in nursing homes due to HSP may also be vulnerable to contracting COVID-19.
It is worth noting that COVID-19 can cause a range of neurological complications (Neurological associations of COVID-19, Ellul et al., Lancet Neurology) and I assess that these may be particularly harmful if they occur in patients who already have neurological problems due to HSP. Those neurological complications include brain involvement (encephalopathy), acute peripheral nerve involvement (Guillain-Barre syndrome), stroke and loss of smell (anosmia) and taste (ageusia).
Of course, it is important to follow the usual recommendations such as hand washing, social distancing, and staying at home when sick.
Q: What about side effects from vaccination? What can people expect?
A: Common side effects to the COVID-19 vaccine include pain at the injection site, headache and fever (COVID vaccines and safety: what the research says – Nature). It is unlikely that the COVID vaccination will cause a severe allergic reaction (anaphylaxis) since this side effect occurs very rarely. Currently, there is no definite link between COVID vaccinations and death. Overall, the benefits of the vaccination outweigh the risks, and this may be particularly so for patients with HSP.
Q: For the HSP community as a whole, what is your advice re COVID-19 vaccination?
A: I would strongly recommend that the HSP community get vaccinated against COVID-19 coronavirus.
Q: Are there factors that may need to be considered in specific cases?
A: The general rules regarding the vaccination would apply, it is likely to be appropriate in nearly all people with HSP, but this should be discussed with your doctor.
Q: So people with HSP should consult their GP or specialist for individual advice?
A: Please talk to your specialist and GP about whether you are suitable for the vaccination.
Q: Anything else HSPers should know?
A: A recent study from the Netherlands
suggests that lockdowns can result in a reduction in physical activity in most people with HSP, which was associated with increased muscle stiffness, pain, fatigue, and problems with walking. I would recommend home exercise as much as possible during extended periods of lockdown, such as those that were experienced in Melbourne.