Having just passed the crucial four week point in my treatment, I spent this morning in the clinic having blood tests. I’d received explicit instructions from the trials nurse that she needed to see me before I took the day’s medication, to take a “trough” level. As I was flying in from Bali at 7:30am, I rocked up to the clinic straight from the airport, smelly, sweaty and half asleep from an overnight flight. Bloods taken and meds downed, I had a chance to duck home for a shower - I was due back at clinic for more bloods in two hours. Time for a quick snooze, then back I went, rolled up the other sleeve and sat back while more bloods were taken. Then back home again with instructions to come back at....ahh...tired and confused now...When am I supposed to go back?... Why am I going back again? (I had to send a text to clarify). Another quick snooze then back to the clinic for more bloods. This time I was awake enough to collect the next months’ supply of meds and to get the good news that my hep C viral load was beneath the level of detection. UN-DE-TECT-ABLE. All my other markers are on track so this is a very good indication.
Many people who have lived with hep C for a long time are keen to get access to interferon-free treatment via a clinical trail. But being part of a clinical trial is no picnic. If it were not for the fact that the hospital is five minutes walk from my home, I would have wasted the whole day going back and forth. I have to complete a dosing card every day noting the time and date I take each medication, including the number of pills taken. I get none of the patient support resources (like creams, reminder apps, treatment diary etc) that drug companies often provide for listed drugs. In some clinical trials, patients are not given any results until the trial is finished, which can be months after treatment ends.
I’m not complaining really. I feel good knowing that what the clinicians learn from my treatment experience will help them manage the treatment of everyone who goes through this treatment, when our Government agrees to make it available for every Australian with hepatitis C.