Read about Ralph's Clinical Trial Experience
While undergoing a routine check of my heart pacemaker performance in 2020, my cardiac physician heard a murmur in my chest and hoped it was nothing serious. Subsequent tests at Prince of Wales Hospital and then Royal Prince Alfred (RPA) Hospital revealed Idiopathic Pulmonary Fibrosis. At that time, and still today, the main medications were Pirfenidone and Nintedanib, both of which slowed progress of this disease but were not able to cure or reverse it. Both medications can have unpleasant side effects for patients. Knowing about clinical trials through a friend’s participation in one for cancer, I enquired about IPF trials at RPA.
When asked by the RPA research group whether I would be willing to participate in a trial, I readily accepted. I commenced on my trial in June 2022. The reason for my acceptance was because of the importance and benefit of developing improved treatment pathways for IPF patients which can lead to better outcomes.
The trial I was enrolled in was sponsored by the company that produces Pirfenidone. It was not testing a new drug but testing a different delivery method of Pirfenidone. Instead of a tablet, a ventilator is inhaled directly into the lungs thereby attempting to avoid unpleasant side-effects. The trial is to test the ventilator system and to determine the strength level of the Pirfenidone to use.
My twice daily routine is to mix two phials and breathe in deeply by mouth for about 12 minutes and then wash up the ventilator. The whole procedure takes 25 minutes twice daily. I visit RPA Hospital every 3 months to have blood tests, Forced Lung Volume test, my chest listened to, and to receive a new supply of medication and ventilators.
A major unexpected benefit for me of participating in the trial was that on one visit to RPA Hospital, the pulmonary physician noted that she believed I had heart failure which was contributing to fluid in the lungs. This meant that my left heart ventricle was not beating synchronously with my right ventricle. She communicated this to my cardiac physician. As a result, my cardiac surgeon replaced my pacemaker, and a third lead was added across to my left ventricle. By inserting a third lead to the left ventricle, it improved my heart efficiency.
My lung function seems otherwise stable after 2 years and I am not aware of any side-effects. I want to comment that I have not received any personal feedback from having participated in the trial and I guess the trial is determining the results and looking at the outcomes of many participants including those overseas. So far, I have read some initial findings of the trial from the internet. It seems as though the different delivery method does result in less side-effects, whilst at the same time slowing progress of the disease. One hopes this means that Pirfenidone delivered by ventilator might become accepted by health authorities for general use soon.
For my part, I want to state that I feel very fortunate that I am on this particular trial.