Crossgar woman hails wonder drug

Crossgar woman hails wonder drug

31 March 2021

AFTER 12 months of sheltering during the Covid pandemic, disability rights campaigner Michaela Hollywood has hailed a new wonder drug she just has received as “liquid gold”.

The Crossgar woman said getting the £1,000 a day drug Risdiplam was the “light after the dark” of a year of constantly doing everything to protect herself from Covid-19.

Michaela has spinal muscular atrophy (SMA), a genetic and degenerative condition which weakens muscles and impacts movement.

She is a full-time wheelchair-user, is unable to sit-up unaided and her breathing muscles are paralysed.

Apart from having to shield since last March to protect her health, she lost the ability to bend two of her fingers last autumn which left her distraught and even more worried about her condition.

“That was the sign of my condition over the last 10 years which had the most impact on me,” said Michaela.

“My fingers were just not as responsive as they used to be. The thing about having SMA was that you were always basically untreatable, there would never be anything that the doctors could do, there was no cure.”

She has been taking Risdiplam for nearly a week now and already her family and carers have seen some improvement in her speech.

Michaela has become an expert on clinical drug trials, often scouring over medical research  journals over the years and was aware of the drug as some of her friends took it as part of a clinical trial.

“There was another NHS approved drug, Spinraza, that would have done what Risdiplam does but it was not going to work out for me as it needed to be injected into the spine,” explained Michaela.

“As I personally know some people who were on the clinical trials for Risdiplam, it was something I had my eye on for years.

“It became available from last August on a Compassionate Use Scheme so we have been working since then with my medical team in Belfast to make it available here.”

While it’s not licensed in Europe yet, the drug was made available to Michaela in the early access scheme.

“I’m very acutely aware that many of friends have not been able to get this drug yet and I know that I’m very lucky. But it’s been a long time coming.”

Michaela will take the drug through her feeding tube every day. “I may not see any major differences in my condition at all. The aim is to really stop the progression of my condition,” said Michaela.

“The majority of my friends in America who take it have all got a little something back that they had lost.”

She explained she had only taken the drug for a few days, yet her carers noticed a muscle tremor in her tongue, which can impact on her speech, had relaxed so her speech was clearer.

“It’s a small improvement but I will take it,” added Michaela. “I have been told that Risdiplam costs in and around £1,000 a day. It’s like liquid gold. Getting it has made the last year bearable. I would go through 10 years of lockdown to get it. I feel like it’s the light after the dark.”

Michaela intends to keep highlighting her experience of the drug to campaign for others can also avail of it.

“I’m in a unique position to help others and they deserve the same treatment as I do. Hopefully, over the next few months we will begin to widen access to Risdiplam.”

She acknowledges that such a drug has come too little for many SMA sufferers, including her 14 year-old sister Martina, who died from the condition 24 years ago.

“My sister died in 1987, so this drug came too late for her which makes this all the more special for us that I have survived to see this happening.

“I remember we all supplied blood samples years ago for genetic testing to help develop the drug.

“To be able to reap the benefit of this kind of research is very rare. I’m so lucky to be benefiting from research we contributed to, so I’m really going to make the most of it.”

Before lockdown and despite the limitations of her condition, Michaela lived a full and varied life.

In 2019, her campaign work saw her fly around several US cities to speak at conferences and she once did a marathon trek across Belfast in her wheelchair and organised a charity skydive in memory of Martina.

She has represented people with disabilities for years and continues to do so now in her role for the charity, Disability Action.

But the threat of Covid-19 stopped her in her tracks, causing her to begin to limit her access to the outside world days before the official shielding advice letter ped through her letter box early last March.

One year on, she said: “It’s been extremely challenging and I’ve felt completely hopeless. We were dealing with a situation where nobody really knew how I would respond to Covid, it was something that nobody really wanted to test the theory.

“There was heightened anxiety, constantly watching for any sign of infection. But it was also getting access to food and medicine and my normal treatment which was extremely challenging. I also had to ensure that my PAs/carers were also adequately cared for and at one point they moved into our home for a couple of weeks.”

Even getting a delivery of pizza was incredibly fraught for Michaela and her parents.

“Every food delivery was sterilised in our hallway before it could be enjoyed, every piece of fruit or vegetable was washed, etc. All of that takes time and we have been doing that for the last 363 days,” she said.

“Every venture out to the hospital or to have X-rays has been so anxiety inducing so I’m looking forward to coming out of shielding.

“It was traumatic going into lockdown but I hope people will realise that as lockdown eases, it won’t be straightforward for someone like me to come out of shielding after spending virtually every day at home for the last year.

“I hope people will give us some time and space to adjust to it in our time and in our own way. I’ve really missed going out to the cinema and everything I used to so but I will be anxious going out again.”

Michaela will have her second vaccination on April 14.