I had a really interesting conversation with the local Abbvie patient experience and medical team, and I heard three things which I think are important to those using the Vyalev / Produadopa Pump. I posted this to the relevant Vyalev Pump Facebook Group and the WhatsApp group of users.
In brief, we discussed the following topics in a summary with more detail, but in brief, three things came up which gave me strong positivity.
Data trend on skin issues is positive – The main fear for the users I know is the damage to the skin and the infections. It sounds from the research that they have from the trials that the skin conditions are improving over the time a patient has the pump and are decreasing. They discussed showing the data which I am of course keen to see but this does go someway to addressing my big fear – that the infection that I am now recovering from is just the tip of the iceberg. Perhaps it will get better. We will of course see, but I am far happier to know that this is the seeming trajectory (subject no doubt to hundreds of caveats, etc.).
The team acknowledges the challenge – they are clearly starting to address the language that they acknowledge the challenges we as patients are facing, and this is positive. The language is not one of the patients causing the problems with lack of hygiene. They seem to agree that those like me using the pump are being as careful as possible and that there are other issues as well as hygiene. I understood from what they said that the initial trials indicated that there were more infections with the drug than with the placebo.
Lastly was the attitude and energy – I have been in the professional world a long time , and what I saw was a team seriously trying to deal with the challenges patients have and to welcome the discussion. They are on the journey with us. We have different objectives of course but are aligned on the goal. We discussed more communication, and of course, they have their limitations in communication due to regulations, which is entirely understandable.
I said that from my personal perspective, I am realistic. This is not a free lunch – there will of course be side effects and bumps – we can cope with these if there is support. Today I saw support.
These were the big topics.
I am not a spokesperson for pharma companies, and I represent no one other than myself and my own personal journey. Just to be clear I have absolutely no commercial or other interest other than as a patient. The success of the treatment is my objective for purely selfish (and some selfless) reasons. I know, of course, there are different agendas out there, but given all of that, I was positive I had the call with the team and pleased with the dialogue.
They reminded me that all users of the Vyalev / Produadopa Pump ensure they are logging through each of our primary points of contact all safety issues, so it is really important to keep them up to date with issues that arise. I am certainly doing it with my contact (a star!).
I am a glass half full. As I recover from a second infection, I admit I am desperate for the Vyalev / Produadopa Pump to succeed because it has made such a huge change to me. I, therefore, am not objective, so treat this with a degree of wishful thinking, but it is working for me this evening.
