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CML Horizons Conference Report: Lisbon Portugal May 17th - 19th 2019

CML Horizons Conference Lisbon Portugal
May 17th - 19th 2019

Nigel Deekes, as the CML Support Group’s conference delegate, describes  highlights from this year’s conference.

Conference attendees:

This year, there were 120 delegates with approximately 40% being from Europe. So this year’s conference was weighted towards low to middle income (LMI) countries and therefore whilst very useful, was not particularly applicable to the European delegates.

As is always the case, it’s astonishing how bad access to treatment is around the World, I must say Pat (Garcia-Gonzalez) from The MAX Foundation does an outstanding job with the Foundation providing medication to many countries around the World. The latest update from the Foundation is that they are now providing medication to some 73,000 patients, astonishing, but also dreadfully sad as this will of course only be a small proportion of those people needing them.


One of the speakers from Kenya, unfortunately, was unable at the last minute to secure a visa which meant some of his slides were presented by Dr Jiang from China. She, understandably, didn’t really present them very well as she did not know them and they were applicable to nations other than her own. However, she did her best.

Unfortunately, she was, in my view, a slightly weaker speaker in that a couple of the presentations she gave were not as publicised or as expected. It’s hard to say if that was down to her lack of understanding regarding the expected topic. She spoke good English, so whether being off subject was down to the health system in China, a communist state, and probably so fundamentally different from the rest of the World, is hard to say.

Conference Committee:

New committee members were appointed with Zach Pemberton-Whitely (Leukaemia Care UK) stepping down. Felice Bombaci, from the Italian patient group, Grouppo AIL Pazienti LMC will take his place for a new three-year term.
Of the six regions the world is divided into, there will be voting on two of them each year from now on, thus 3 years x 2 members = 6 members. I think it is a good idea to rotate more regularly as it means there is a constant change of the committee rather than a ‘cull’ once every three years.


(i) TFR:

Topics of most interest were of course TFR. I did mention to committee members at one of the evening meals that I felt considerably more time should have been given to this as it was probably the most interesting topic of the moment, certainly from the First World Countries point of view. As per my comment with regard to LMI countries, that it was not applicable to us and Europe, the same could be said in reverse, that they – many delegates had little ‘relevance/interest’ in TFR. By interest I do not mean ‘interest’ as of course they are very keen on it, I mean more lack of ability to try it due to lack of PCR testing and/or access to drugs themselves.

(ii) Dose reduction:

As mentioned, TFR did not feature as heavily as I thought it would or should have. Whilst dose reduction was discussed, and at some length, it was discussed more in the sense of reducing side effects than as an avenue towards TFR.

As many are aware, it is generally felt dose reduction is very safe and indeed that many patients are being over-treated, with the probable exception of standard-dose imatinib. Various stopping trials were mentioned, unfortunately and as usual, Destiny was not listed, although as I was co-Chair of this part, I did, of course, make reference to it; there seems very little appetite towards a half dose reduction strategy as a step towards stopping with everybody favouring a ‘cold turkey’ approach of just stopping. Sadly I think we are banging our heads against a wall with this currently.

(iii) Patent expiry on TKIs:

Patent protection was again discussed at some length and indeed a half a day was given to "CML in 2023" when the majority of TKIs will be generic. It was felt this is a good thing giving patients a wider choice and cheaper access to treatment. However, it was very much discussed in terms of this perhaps marking the end of the development of new TKIs given that we have a 95% survival rate and given generic TKIs will be so cheap (relatively) that there will be no real advantage in any pharmaceutical company developing new ones.

(iv) New drugs for the treatment of CML:

Contrary to the fear that there will be a lack of incentive to bring new drugs to market, Dr Jiang mentioned one that is being developed in China with a view to attacking the T315i mutation and additionally, another is in vitro-testing. However, with a potential budget of half a billion pounds to bring these to market, it’s unlikely more will follow.

One session featured heavily on Novartis’ in-development, ABL001 drug with there being much anticipation about this as it is not a member of the TKI class. Rather, it attacks the disease in a different way whilst providing little to none of the side effects that are reported for the TKIs. Obviously, Novartis is keen to push this forward as a combination therapy with one of their TKIs.

Which sessions did I find the most interesting and fascinating?

The above ABL001 session and that of Prof Robert Thomas from the UK. On the last day, he provided a presentation about exercise, diet, calorific intake, sugars and so on which was fascinating and has published a book - Life after Cancer – second edition -  which I will read. Whilst the information he gave was very good and made a lot of sense, it is just a shame that we do not generally have the complementary services, Doctors or nurses, in the UK to both support and progress his and his team’s research whilst also providing information for patients.

(v) Ferdinand: an example of the often precarious situation for CML patients in LMI nations:

Very sadly one the delegates, a gentleman named Ferdinand, from Kenya, died just over a year ago, a truly lovely man. He tried three different TKIs, after much delay, which were provided by the MAX Foundation. Unfortunately getting to bosutinib (Bosulif) too late, and therefore passing. His wife, mother and sister attended the conference. This really was incredibly moving and thought-provoking.

To hear first-hand about somebody dying from CML, particularly somebody that I’ve met on a few occasions at conferences is tragic. The more so since his death might well have been avoided had he had the easy access to TKIs we in non-LMI now generally enjoy.
Obviously, I don’t know the full ins and outs of it, and I guess there was much more to it, but the tribute to him was deeply moving as was the emotion expressed by his family. It does make you realise access to CML treatments is not a done deal. Seeing pictures of him in hospital wasting away was incredibly sad. I shared the minibus to the airport with his sister and mother on the way home which gave me the opportunity to chat further. I guess this is why we do what we do.

(vi) Other conversations, thoughts and observations:

  • I had opportunity to speak to representatives from Novartis and Pfizer together with Incyte, all were still very positive about the conference but all felt that as all generics come closer, things may well need to change.
  • As regards future Horizons conferences, I spoke with Jan Geissler and said whilst we had one break-out session this year with Europe and the rest of the World being separate, I felt next year it would be better to have one on a daily basis. My rationale for this is, it seems counter productive to waste many hours listening to presentations on things that do not affect us in Europe directly and which delegates from Europe are in all likelihood unable to alter.

I’m not saying that information from elsewhere in the world is not of importance, as it is of course, but that it’s a question of focusing on, and giving priority to issues most likely to affect us.

  • It will be interesting to see whether my comments are taken on board as I did also put these on the delegates’ feedback form.