The third aHUS alliance affiliates meeting was held on 28 June 2015 , the day after the second UK aHUS patients and families conference, which most of the international delegates had attended. Joined by others it had been a late night with exceptionally sunny and hot weather , the delegates enjoyed the sights of the city from the London Eye , and a meal of english cuisine ( there is always a downside) at the Sherlock Holmes restaurant. Quintisensionally English but , as always in the brief time we have together , the conversation was about aHUS.
So, Chaired by my daughter Emma ,the meeting began the next morning in another room in the University of London’s Senate House. It was the largest attendance for an alliance meeting to date and all countries were represented in person apart from aHUS Canada whose representatives had a personal event to attend.
What was talked about and decided upon at the meeting can be read in the notes of the meeting kept on the alliance’s website here.
After the usual updates of aHUS activity in each affiliate country, talks were given by Prof Tim Goodship about the aHUS Expert Centre in Newcastle and UK aHUS treatment. A representative from another Pharma making a complement inhibitor was to follow:
Three other highlights were:
Kamal Shah alliance affiliate from India had studied the progress made by countries in the alliance in accessing eculizumab since the first alliance meeting in Barcelona. From his analysis , Kamal showed what were the key steps to progress and the extent to which they had been reached in each coutry. A fascinating study and of value to any aHUS patient group aiming to get treatment in its country.
I took the opportunity to report back on the the alliance inaugural representation at the Global aHUS Registry’s Scientific Advisory Board. In particular to get an answer to the question asked of me ” What do aHUS patients regard as priorities for aHUS Research?” The ideas for research topics were captured, analysed and I reported them back to the aHUS registry. Little did I know where that would ultimately lead to!
I also led a discussion about how the alliance’s stated aspirations from the Barcelona meeting could be turned into a mission statement and simple vision for the alliance.
I had condensed the 30 or so aspirations into seven over-archiving strategic objectives, and from those the following ,even more overarching, mission statement was drafted.
The aHUS alliance, through the collaboration of its affiliates
will promote global awareness of aHUS,
will work with international aHUS researchers and,
by supporting newly emerging national aHUS patient groups,
will bring relief and support to those affected by aHUS to save, and improve the quality of, more lives.
Taking that one stage further and seeing that it would be its collaborative efforts which could help to make the lives of aHUS patients and their families better, a simple vision for the alliance sprung out
Good will Come Together
Although not all alliance affiliates were convinced that this was the best stated alliance mission and vision, enough supported it as something to use until something better could be proposed. That is the way it has remained.
Led by Francisco Montfort and Linda Burke, the alliance considered whether it should have its own website as a platform for its work , rather than just use Rare Connect, which had been its chosen platform at the start. Francisco showed the meeting an interim alliance website he had created himself , but it lacked capacity for development. The alliance having agreed to have its own website , a task group was set up to work on a website design acceptable to the alliance affiliates,
Also led by Linda and Francisco , the meeting discussed and agreed plans for the first aHUS Awareness Day on 24th September 2015. The theme was to be a message for the social media by individual patients around the world ( using an “air mail letter format” to emphasis it was international). This was the first unifying event of the alliance, but national aHUS organisations were encouraged to hold their own awareness events too.
The alliance meeting ended on time and was a great success. It demonstrated how, despite distance and language barriers, a group could collaborate on projects with a common mission towards a common vision. All in all it was very promising.
It was gratifying to the aHUSUK that it had hosted a very successful gathering of alliance affiliates.
Prior to the alliance conference aHUSUK had received an e mail from a Canadian TV documentary makers. It was asking about aHUS advocacy organisations in different countries and what they did. I offered them the opportunity to come to the alliance meeting to see for themselves, as there was nothing to hide to my mind. They declined my offer.
Several months passed and the documentary appeared on Canadian TV. It did a hatchet job on patient organisations which had been funded by Alexion , and in the process demonised aHUS patient advocates “as not wanting to bite the hands that feed them”. It did damage to aHUS patients organisations around the world , painting them as “advertising groups for Alexion ” instead of the unpaid volunteers who just wanted a treatment for their families and others. I would have welcomed the chance to show the TV company the reality of patient advocacy , but I guess that would not have been good TV.
The video of the programme can still be seen at this link here
My wife and I had spent hours doing unpaid menial work preparing conference packs and badges behind the scenes for that conference weekend , and it felt like the media now portrayed that as something to be ashamed of. That kind of thing could make someone reluctant to advocate, even though it was for people who through no fault of their own have had their lives taken away , diminished or burdened in a brutal way but that’s not a good story for these investigative journalists who were treating a specific group of patient advocates unjustly using all the power the media held.
Patient groups ,and increasjngly individual patients working independent of national patient organisations,do need to be fully aware of the need for ethical relationships with Pharma. Rules covering such interfaces exist in all countries. In the UK they are set out in a Code of Practice by the Association of British Pharmaceutical Industries (ABPI), and are independently “policed”.
A year or so later the alliance was approached by a reporter from Bloomberg about a matter along similar lines in the USA . A scandal was brewing there, involving non aHUS patient charities which would result in a $13 million fine for Alexion ultimately.
The alliance put all this to one side and just got on with the agreed programme of projects to achieve our vision
“Good will come together”.