Some of you may have read and being appalled by the following piece in this morning’s Guardian.
Robert Booth. Coronavirus: real care home death toll double official figure, study says. 13th May 2020
Excerpt: “More than 22,000 care home residents in England and Wales may have died as a direct or indirect result of Covid-19, academics have calculated – more than double the number stated as passing away from the disease in official figures.”
The hidden burden of COVID-19 goes way and beyond care homes. I was on a Zoom video conference with my UK colleagues last week and each person was asked about their centre’s COVID-19 experience. Almost everyone had had a COVID-19 related MS death. The tragedy was the deaths tended to be in older people with MS who were more disabled and with comorbidities. I am aware of two MS deaths in our patch, both bed-bound with end-stage MS. Whether or not these patients died from COVID-19 related problems is unknown. Both deaths have been ascribed to complications of MS.
Forget about the deaths what about MS disease activity? Before COVID-19 it was very unusual to have patients on established DMTs have severe relapses. Severe attacks were typically seen in patients presenting with their first attack or in patients who were non-adherent to their DMTs.
Since the lockdown, I have had three patients who have had severe relapses waiting to be initiated on treatment. One who has been furloughed and decided to be locked-down in her parents home far away from London. One waiting to start a DMT, but had delays in relation to baseline screening bloods and making a decision about treatment. As she has now had a severe and disabling brainstem or cerebellar relapse this shifts her into the high-disease activity group so she is now eligible for natalizumab. The latter could be viewed as some kind of “COVID-19 pyrrhic victory” as she now gets to be put on a high efficacy therapy. Fortunately, she is young so she should make a reasonable recovery from the relapse, but the damage has been done and some of her precious brain reserves has been shredded and lost forever.
The final patient is a bit of a procrastinator and he decided to delay starting his treatment until after the peak of the COVID-19 epidemic. If there was no COVID-19 he would have almost certainly be treated two months ago, which would have potentially prevented the relapse.
I would be interested to hear if any of you have had similar experiences, i.e. poor outcomes due to a delay in your treatment or untoward events due to your MS service being mothballed during the COVID-19 crisis.
I have little doubt that people with MS will be paying the price for COVID-19 for years to come. I suspect many will have been started on lower efficacy DMTs, some will have had their DMTs stopped or switched to lower efficacy or supposedly safer DMTs, others would have had their treatment initiation delayed and other would have had repeat dosing postponed to some yet to be determined date in the future. In addition, many people with very active MS who were lined-up to undergo HSCT have had their procedure delayed indefinitely.
I wonder what the true cost of the above will be for people with MS?