Saturday, 27 September 2014

Banning patient advocates from parts of congresses is unconstructive and anachronistic.

The ultimate purpose of medicine is to serve patients. 

Only patients can tell us whether a treatment meets their expectations. In these exciting times, where break-through discoveries meet financial austerity, ignoring patients’ demands is a waste of resources that we as civil society should not tolerate.
Patient advocates are de facto health care professionals, providing patients with support, advice and information. It is therefore in all our interest that advocates have access to reliable, validated information sources and are as educated as possible to 

1. best serve patients and 
2. contribute the patient perspective in a maximally constructive way, so that we are reaching our goal- meaningful medicine for all patients.

The current situation at the ESMO 2014 congress where advocates are banned from certain areas of the conference is therefore both unconstructive and anachronistic. The very same advocates meant to require protection from the- highly regulated and checked for scientific and legal accuracy- promotional material for new drugs have already discussed the clinical trial protocols and set on the advisory boards when these very drugs underwent development.
Patient advocates attending scientific congress are highly motivated individuals who dedicate enormous amounts of their time- often unpaid- to educate themselves in order to help others. We as society ignore that expertise at our own peril.

Today, it is opportune for everyone in health to claim to have 'the patient at the centre' of all endeavours. For all of us as society to profit from the existing patient knowledge to build a better future, not only for today's but also for future patient generations, will require more than lip service.

Bettina Ryll

Founder Melanoma Patient Network Europe

Tuesday, 22 July 2014

MPNE Workshop Nov 2014- project management for European Melanoma advocates

Registration for the MPNE Workshop Nov 2014
'project management for European Melanoma advocates' is open!

Why a project management workshop?
Most Melanoma advocates are highly- motivated volunteers who use their spare time for advocacy, in addition to their profession, their family life and sometimes while being patients themselves. 
We all want to see the desperate situation of today's Melanoma patients change and managing advocacy projects with limited resources of time and money successfully is one of the key factors to ensure progress- therefore this workshop!

In addition, there will be plenty of opportunity to meet Melanoma advocates from other European countries for you to share your experiences and to get inspired by what others have been doing.

Read more and register via the MPNE website- looking forward to meeting you at Krusenberg HerrgÄrd in Sweden!

Sunday, 6 July 2014

GSK MEK inhibitor authorised in Europe!

The GSK MEK inhibitor (also Trametinib, now called Mekinist ® has been approved in Europe-

So now we are waiting for the up-date of the BRAF/MEK combination versus BRAF mono therapy! The latest results as presented at ASCO surprisingly looked like that the GSK BRAF monotherapy (Dabrafenib) was actually better than initially assumed- much more in the league of the Novartis BRAF inhibitor which makes for quite some interesting thoughts in the light of the currently ongoing Novartis/ GSK deal, especially as Dabrafenib was priced at a *lower price* than Vemurafenib in the US- so who knows we might actually see the day where we get better drugs for lower prices, very much in line with the recognition of the Novartis CEO Jimenez that the endless stacking of expensive cancer therapies is not sustainable as published this April in Forbes.

These latest results are at odds with previous results that had shown that the BRAF/ MEK combo resulted in longer time to resistance and fewer side effects, in particular less joint pain, rash and new skin cancers forming than either mono therapy with a BRAF or a MEK inhibitor.

Because the REAL question is obviously going to be- who is going to pay for a drug that in mono-therapy is not as good as a BRAF inhibitor?

Friday, 13 June 2014

Benefit/risk assessment in patients- really good webinar!

This was a really good webinar organised by EMA, EFPIA and CASMI

The cancer community can learn a lot from the experience of the rare disease groups!

Wednesday, 11 June 2014

Watch the space- NIVO post-Ipi coming soon in Europe

For patients who have progressed on Ipi-

Friday, 6 June 2014

Patient on intermittent MEK/ BRAF combo for 85 weeks

Absolutely worth reading!!

On/ off treatment of the BRAF/ MEK combo is possible and can lead to a long time on treatment- this patients has been on it for 85 weeks!

Unexpected MEK1 Mutations Not Cause of Potent Melanoma Drug Resistance

Not from ASCO but on my list of noteworthy!

The previously held belief (it was very much thought of the day when Peter was diagnosed with Melanoma) that resistance to BRAF inhibitors (like Dabrafenib or Vemurafenib) is caused by the acquisition of new mutations in MEK1 turns out not to be true as patients who have mutations both in BRAF and MEK1 from the beginning still respond to the drugs-

read the details here!

Sunday, 1 June 2014

ASCO 2014

I am currently at ASCO - see the separate ASCO blog! Thanks to the great Masterclass from the European School of Oncology, I got to know many other advocates in other cancers- many of which are now here, too. It is good to learn from others' insights, Melanoma unfortunately doesn't have the organisation other cancers have- and the faster we learn and the better we get at advocating, the better for Melanoma patients!

Best regards from Chicago!

Thursday, 6 February 2014

Science: Cancer Immunotherapy breakthrough therapy of the year 2013!

The scientific journal  Science  has selected Cancer Immunotherapy as breakthrough therapy of the year 2013.

Patients with metastatic Melanoma will be familiar with the drugs- like Ipilimumab, Nivolumab and other CTL4, PD1 and PDL1 antibodies- that make use of the body's own immune system to attack the cancer and that for the first time are able to provide long-term survival in Melanoma.

Read the full article under: