How Jessica Ragusa is conquering life and CF

By Jessica Ragusa

Hi, my name is Jess, and as you may already know, I have cystic fibrosis (CF).

I am excited to share my journey of living with CF, my family’s commitment to getting me on Trikafta, our fight against the government to get it on the PBS, and the little miracle children in my life. 

The condition we have all intimately come to know as CF, shaped my life’s narrative and gave me a unique perspective on the power of human endurance. I was diagnosed at birth, so for me, I know no different, but the news of my diagnosis felt like an earthquake to those around me, shaking the very foundations of my family’s life, with hospital visits, treatment routines and uncertainty, becoming our new normal. But a sentence from one of the best put us on a path that was going to set me up. Dr Peter VanAspern told Mum and Dad, “Don’t you dare wrap her in cotton wool,” and knowing nothing else, they did just that, and for most of my life, it served me pretty well. As a kid, I had the regular flare-up but nothing too serious, I got to run and play as any ‘normal’ kid would. 

Everything was going so well, until it wasn’t, haha.  When I turned 18, I went from Westmead Children’s to John Hunter and then shit hit the fan.  

It was an entirely different world in there. They ran appointments differently, they spoke to me differently, no sugarcoating anything there, it was a rude shock to the system.  

It wasn’t long after that I got a call telling me I had to race up to John Hunter. I was at work, and being the stubborn person I am, told them I would finish my shift at my local leagues club, pack a bag and head up, so give or take 3 hours and I’d be there… but no, this was one hospital admission I couldn’t wait three hours for, so they called in the big guns, Mum. Mum was quickly at my workplace, we had a bag and off we went to Newcastle, where they sat us down and told me I had caught Burkaldia Cepacia – bug that they had to try and eradicate quickly before it took over my body. So, in I went for my first hospital admission, with 5 IV infusions a day, a handful of oral antibiotics to add to my meticulous daily routine and two physio visits a day. Weeks went past and nothing changed, I was still growing Cepacia and didn’t seem to be getting any better. The colour slowly drained from my face, my lung function continued to decline, as did my mindset. 

I’m not sure what happened next, it becomes a bit of a blur here, but too many hospital admissions came and went, my lung function wasn’t getting any better and there were a lot of tears. I remember a very upsetting conversation with Mum and Dad, where I sat them down and said I don’t want to do this anymore. I don’t want to kill myself, but I don’t want to be alive. This is too hard; life shouldn’t be this hard. 

On top of this, at some stage the doctors called in Mum and Dad for a meeting, sat them down and told them this bug was going to kill me, and that I wouldn’t live to see the next 6 months… that was 10 years ago. 

Sheer determination, a whole lot of stubbornness and the little bit of spark I had left got me through the darkest of days. 

I started seeing a PT, but not for your typical weight-lifting gym session personal trainer; so, we went back to basics: learning how to breathe properly, breathe whilst walking and talking and getting my body to function to do the most basic of tasks. With 3 sessions a week, I slowly got faster, I got stronger, I took deeper breaths.  

We bought a dog, Mr Ollie George. The most gorgeous Choccy lab you’ve ever met. Ollie failed puppy school, but he was the best support dog a girl ever had. But it also meant I had to walk Ollie, so instead of doing my pep mask, I went for a walk, and living on the central coast, the salt air replaced my saline nebs and so I started to function as a human. Yes, I still had CF, and this bug that never fucked off, but I was going to Uni, I started playing sport again, I was keeping up with my friends, my lung function was stable and for me that was enough. Years went on and I was having 2-3 hospital admissions a year, a tune-up as we all know it as. It seemed to be keeping my CF at bay, and as I said, for me that was enough. Looking back, I think we were in denial about how sick I really was, but I was surviving and to me, that was all that really mattered. 

2020 came around, I married my husband, James. COVID also hit, and well wasn’t that a scary time… anyway, I was now working, living out of home, being an adult. CF admissions came and went but they seemed to be getting worse, I was regularly coughing up blood, my lung function started to slowly inch lower and lower and daily chores like vacuuming were becoming harder and harder.  

October 2021, I was eating a quiche at home, and then all of a sudden, I was in bed coughing up a considerable amount of blood. A normal day for most CF’ers, but this one scared me.  So as anyone does, they call their mum… 

Mum comes over and we head into the hospital. Hours pass and more blood comes up. This one was bad. This one rocked me. I was sent for a CT scan, where they found out I had two chest infections and pleurisy. A trifecta of issues and a terrible diagnosis for a CF patient. I spent three lonely nights in a hospital, because, well… COVID.  

I was discharged and sent home on IV antibiotics for three weeks.  

In the past we’d spoken about Trikafta, we’d applied for special consideration to get it at cost rather than market price, but I was rejected three times, because in the eyes of the pharma companies, I was, “too well.” We’d looked at the option of self-funding the drug, but I always put it aside because it was too much, financially and emotionally and I didn’t want to be the reason we lost our family home. But this hospital admission was different. This one broke me. It hurt both physically and mentally and I was in a world of pain. So, we did it. We took the leap and started the process as a self-funding patient to gain access to this life-changing / life-saving medication. At a cost of $21,375 a month… a ludicrous amount of money for a family to be paying to keep their little girl alive, but, it did just that. 4 weeks since taking the first (two) little pills, my lung function went up by 24% and sat in the 80’s for the first time since I 15. I was happy, I was healthy, I was well. For the first time in a very long time I could breathe, I could sleep, I could function! 

No more coughing, puffing or vomiting on the footpath after going for a walk. It was incredible. But unfortunately for a country that claims it has the best health care in the world, our health system was failing me, and my family.  

Financially we could afford to self-fund Trikafta for 9 months before we had to pack up and sell and probably live in a tent. We just kept living our lives hoping this day would never come. 

Then one day, I decided to share our story. 

James and I were sitting in the IVF clinic, discussing what we do next. I should say, at this stage, James and I had been trying to have a baby for 2 odd years. We had taken all the tests, and nothing was wrong with either of us, it was just CF. Another thing this terrible disease was taking away from me.  

So I sat in an empty waiting room, and I started to write an Instagram post. This post was just to share my story, to tell people what the hell was going on in my life, and that the government was failing me. I called on the government and the PBAC to pull their shit together and start subsidising the drug. Never thought anything more of it. But then my story got shared, and reshared and reshared, and that’s when the fight began.   

People wanted to help and joining forces with CF Australia, we took on the government. We started a petition, I spoke with media outlets, and I went on TV and radio to share my story. I wanted people to know who Jess Ragusa was, what my life was like and the ridiculous means a family has to go to, to stay alive. Very quickly, people with power knew my story, and claimed they were doing everything they can to help… 

A few months past, maybe three, and I got a phone call saying that Greg Hunt, the minister of health (at the time) wanted to meet me. Two thoughts went through my head, either he is going to say sit down, shut up and back off, or congrats, it’s going on the PBS. And well, April 1st, 2022, it happened. The drug which cost over $20,000 a month had been subsided and was going to cost me $6.40.  

Absolutely insane…  

Let me tell you, when I say this drug is life-changing, I mean it, with my whole heart. 

This drug changes lives, it saves lives but, in my case, it also created life for me, Mr Cooper James Ragusa and the little squidlette currently growing inside of me. 

4 months on this drug, my body started to function like it should, and despite being booked in for IVF, James and I fell pregnant and by October, we had a little boy…  less than two years later, were pregnant again and due any week now. 

To think that 10 years ago, they gave me six months to live after being so incredibly sick, basically a walking talking zombie, to having absolutely everything I ever wanted, everything you’d literally die for, you can’t make this shit up. Something about having CF makes you a warrior. You have this determination, this fight, this drive that is instilled in you. I look back at my journey now, and I have this deep sense of purpose, to raise awareness and advocate for change. I’ve joined hands with others in the CF community to amplify our voices, challenge misconceptions, and fundraise for research. Together, we are not only changing our own narratives but also shaping a brighter future for generations to come. 

So, let my journey be a testament to the power of resilience, hope, and embracing life’s challenges head-on. Cystic fibrosis may be a part of my story, but it does not define me.  

I share my story with you today, not as a victim, but as a victor—a living example that life’s obstacles can become catalysts for growth and transformation. 

I urge each of you to find inspiration in your own challenges, to embrace them as opportunities for growth, and to stand in solidarity with those who are fighting battles unseen.  

So, I will leave you with this… remember that next time a day goes all wrong… to somebody else, you will always be strong. ♥️