Dear Members of Dáil Éireann, Seanad Éireann, NPHET & High-Level Task Force on Covid-19 Vaccination,
I hope this finds you well and that you and your loved ones have been spared so far by COVID-19.
Before I detail my issue, I wish to thank the government, NPHET, HSE and especially those on the frontline in healthcare services for the extraordinary manner they tackled the novel coronavirus since it landed on our shores. The often bold, alternative ways of thinking, researching, and governing make me proud to see what Ireland is capable of by aiding in the creation of vaccines in no time. In contrast, I fear a cure for my illness multiple sclerosis will not happen within my lifetime.
My name is Willeke, and I have been living in Ireland since 2002. There are many things that brought me here, in a nutshell: Ireland itself, Irish people, its literature, nature, history, sense of community spirit, and much more. Like James Joyce eloquently said in just a few words, ‘When I die, Dublin will be written on my heart.’
Ireland and being counted as ‘one of yours’ will forever be engraved on my memories and my heart. That memory, however, has received some bumps and bruises along the way, which is why I wish to write this letter.
MS is the most common, disabling, progressive and incurable neurological illness of the brain and spinal cord, affecting at least 9,000 people in Ireland. Because it is a central nervous system disease, symptoms can range from severe fatigue; cognition and emotional changes; altered sensations; harrowing nerve pains; mobility, movement and coordination impairment, problems with vision; etc.
Considering there are 50+ symptoms related to multiple sclerosis, it is easier to say that any neurological symptom or sign may be part of a person’s MS. Symptom management like drug treatments where possible, physical therapies and lifestyle changes can help slow down its progression.
The public’s idea of what MS is, does and how it progresses is something not always easily understood, as MS is not what it says on the tin. It is multifaceted. It is a lonely illness that is both devious and an affront, as it never arrives at the right time. It pervades the physical body of its owner, and adds question marks to future dreams with, or without loved ones, while others are wondering why you are not yet in a wheelchair, and if you are therefore honest about that invisible illness of yours. It is also a loveless, lonely affair because only you know and understand what it is like to be in your shoes as someone with an incurable illness that will worsen over time if not treated as it should.
I am part of the MS community and received my diagnosis a few years after moving to Ireland. That verdict arrived after checking into A&E after months of many peculiar, intensely painful sensations. Trigeminal neuralgia (TN) was the first to cross my path. Informally called ‘the suicide disease’ because of its severity, TN is an excruciating piercing pain that affects the trigeminal nerve which carries sensation from your face to your brain. It translates into bursts of sharp pain every few seconds and feels as if an ice-pick is plunged around and into my left eye; ear; temple; small spot behind left ear, and is triggered by an extensive list of the unlikeliest things like frigid air; brushing teeth; touching my face; talking; laughing; sudden loud noise; vibration from walking; etc. This can last for up to two hours.
Equally unexpectedly, disabling fatigue crept up on me; the ten steps from the couch to the kitchen felt like 5,000 steps. Worse, any energy I had during the week, had already dissipated by noon, and after coming home from work, I stood crying at the bottom of the staircase, unable to go upstairs and straight to bed unless I slept for an hour downstairs first. After my diagnosis, more unidentified symptoms received a formal title. Years later, I had to retire early as I not only became a liability to myself but also to those in my professional life.
Sixteen years post diagnosis, MS taught me that new symptoms can strike at any given moment and severity, and sometimes for no apparent reason other than, “MS is what MS does.” As the list is long, these are just a few ways MS misbehaves and has affected my life, e.g., waking up of intense pain, and then being unable to fall asleep again because of that same pain; blurred vision; noise sensitivity; hearing loss in one ear; vertigo; prospective memory issues; pins and needles or numbness over several parts of my body; severe fatigue, and I almost hit the dentist one day during a difficult tooth extraction because his hand on my face caused such unbearable pain I could not stop crying for 30 minutes. It was the first time I cried because of MS since my diagnosis 12 years prior. It also led to PTSD of fear of experiencing such pain ever again. And no, I have not been back to the dentist as I still have PTSD, now enhanced because of COVID-19.
The long list of symptoms has an equally notable list of medicines attached that were sometimes trial and error, or when higher doses stopped working and had to be replaced, a new search began with of course, more trial and error. Now on 29 tablets and a daily injection for MS, endometriosis, chronic bronchitis, diverticulitis, and heart arrhythmia problems because of other medicines, I often feel like a walking pharmaceutical facility. It has also given an ample insight into what works for people with MS, and what to avoid.
Which brings me to the reason for writing this letter, and please forgive me for the long bio and cutting into your time legislating while reading this, but I want to do justice to the MS community’s worries by using my issues as a template, as I am sure others will recognise themselves in my letter.
Allow me to explain a basic medical fact about MS. The UK’s Brain and Spine Foundation explains MS like this: “The nerve damage experienced by people with MS is caused by a problem with the body’s immune system. Our immune system defends us from harmful bacteria and viruses but, in the case of MS, it mistakenly attacks a healthy part of the body, the myelin sheath. This is called an autoimmune reaction. We do not know exactly what causes the autoimmune reaction.”
As such, the immunosuppressant divide is smaller than its difference as everyone with MS is immunocompromised, regardless of which treatment they are on.
For people with neurological illnesses in Ireland, the past year has not been easy. Claiming they will be OK without proper funding to neurorehabilitation services and, for example, Ireland’s national MS society, is the greatest disdain given to patients and organisations already stretched to their limits. Ten years after the launch of the National Neurorehabilitation Strategy, it could have been a lauded plan that enhanced neurorehabilitation across local communities. Instead, today, just 9% of neuro-trauma patients have access to specialist rehab care.
The recession has come and gone, so the question must be asked, “What was Dáil Éireann doing during that time to improve the quality of life of those with neurological conditions?” There continues to be sustained absence of new neurorehabilitation services, and recent decisions made by Dáil Éireann about the provisional rollout of COVID-19 vaccines, have led to anger and wide-ranging consternation in the MS community.
When early prevention is key in both MS and COVID-19 diagnoses, the latest changes to the vaccine priority list have forced people with MS into a cognitive dissonance that is deeply concerning on several levels.
It seems that the Department of Health now believes that certain people with MS are at no greater risk than the general public, simply because they are on different medicines. But, please let me remind you that disease-modifying treatments try to calm down the inflammation that causes MS by interacting with different parts of the immune system. In other words, immunomodulation is at play.
It therefore simply defies all logic, for not being on immunosuppressant treatment for MS, does not mean a full or partial absence of MS, and its divide is smaller than its difference as everyone with MS is immunocompromised, regardless of which treatment they are on.
It cannot be generalised and subsequently forced from (very) substantial risk groups 5 or 7 to the second-to-last group 14 of people that don’t have any comorbidities. Despite decades of advancements in research into multiple sclerosis, this is a staggering breakdown of knowledge.
This downgrading has as such, added a significant layer of anxiety, worries and feeling discarded by the government, as many already had a hard time managing their illness. Not only is their illness a red target for anything that might stick, but many with MS also have comorbidities that make their physical bodies an even bigger target. Many like myself, have voluntarily placed themselves under self-isolation or lockdown since March 2020 of fear of catching COVID-19 from those who flaunt guidelines.
Arguing otherwise goes against the knowledge that no matter what type of MS you have, if you leave it untreated, it can strike your body at will, giving neurodegeneration a chance to roam free. Does Dáil Éireann and NPHET really want to take that chance?
The updated provisional list of vaccine allocations therefore attests of an almost lackadaisical way of redesigning healthcare for people with central nervous system illnesses, and at its worst time in modern history.
Of course, it speaks for itself that urgent immunisation is required, especially for patients on immunosuppressant treatments like Gilenya, Mavenclad, Tysabri, Lemtrada., Ocrelizumab or Rituximab. Nevertheless, unlike the ‘provisional’ list of priority recipients, MS is not provisional.
People who are not on immunosuppressant treatment remain at risk by triggers that can cause old or new symptoms. These can lead to exacerbations that acutely affect people’s lives for a prolonged period. Like this, I found myself in an MS attack last year that took four months to clear. Had I caught the coronavirus my body would have had an exceedingly tough time fighting it, especially since my immune system thinks it is OK to accept hospital-acquired superbugs that now place me at a higher risk catching it again.
Also, those on other drugs can be at risk, as side effects are real things that often go unreported. Personally, I am on high-tech drugs, including twelve different medicines for my MS and for other conditions. I could not be more acutely aware of other risks that might require urgent hospitalisation as issues like a partially collapsed lung during a brutal bout of bronchitis, and severe allergic reactions to medicines have already required urgent hospitalisation. Also, my BMI on its own places me in the high-risk category.
Yet, Dáil Éireann’s calculation that neurodegenerative illnesses plus lots of medicines equals no added health risks, is almost laughable if the novel coronavirus weren’t so deadly an illness for those who already are immunocompromised. As I am writing this, I can only imagine what the other 9000+ people with MS are feeling, as it surely makes my heart race of fear right this minute.
The current government still seems to believe that they can control the pandemic with statistics instead of using medical and scientific data from NPHET to tackle an ever-mutating illness that does not have an expiry date. COVID-19 has shown that it lives by its own rules. Also, by late or refusing to follow the advice of NPHET and other medical experts, another Christmas debacle might roll into a 2021 repeat, and I foresee more lockdowns as fewer and fewer people seem to believe in its value.
At the time of writing this, one day after St Patrick’s Day, we are one year into a pandemic, and despite guidelines that have proven their worth, the current Health Department is still lost in translation.
The last issue that causes worry is the disconnect between who will eventually decide into which group patients will fall. Neurologists who do not always have access to all your health information, or your GP who doesn’t always have updated reports of your neurological exams?
One thing is for sure; as much as I would like, my GP is not a neurologist. From what I understand, GPs will decide the priority of individual people within each group, with input from neurologists at a level of informing policy making. However, the planning seems to have shifted again from GPs to hospitals informing people when they’re due their vaccine.
Unless the level of sharing patient-sensitive data between consultants and GPs changed, the only thing my GP sees is the date of new hospital appointments, and what the outcome was of certain diagnostic tests. Similarly, my MS team might not have any knowledge about my other conditions. Is this truly where the cross-functionality stops and patients—together with advocacy groups and charities will need to fend for themselves?
There is much power and common sense to be found among patient communities because of knowledge not shared by decades of underfunding neurological services. Putting their patients into a general statistic without further exploring their medical needs is sad, and not something I ever thought possible in Ireland.
I hope you can understand that many people with MS, because of the nature of the beast, have been astonished and angered by decisions made recently by the Dail. Opening newspapers these days only adds more aggravation as conflicting reports or promises not kept flood the media.
We do not want to be “special” to get early vaccination access, but we urge you to reconsider what neurological and other health needs are required when assessing priority list decisions. All we ask for is for multiple sclerosis to be regarded for what it is: an incurable neurological, autoimmune illness of the brain and spinal cord, the two items we all so desperately need to see another day.
Thank you kindly for reading,
Have a wonderful day & stay safe,