Patient on trial- what trial participation really is like

50 years of B lymphocytes and why it matters for Melanoma

Immunology: Fifty years of B lymphocytes

http://www.nature.com/news/immunology-fifty-years-of-b-lymphocytes-1.16653

In 2013, Cancer Immunotherapy was chosen as the breakthrough- therapy of the year 2013 by the scientific journal Science, a choice Melanoma patients can relate to very well- as it is novel anti-based therapies blocking brakes in the bodies own immune system- like CTL4, PD1 or PDL1 antibodies- that for the first time ever provide substantial hope of long-term survival in Melanoma.


The article in Nature at the occasion of the 50th anniversary of the publication of the paper that first described two classes of lymphocytes- without this knowledge, we wouldn't have today's greatest hopes in Melanoma.


From the article- 

'At the time, the central question in immunology was how vertebrates tailor their defences to bacteria and viruses, whose chemical structures show nearly unlimited diversity. Within two years of joining Good's laboratory, Cooper had made a discovery about the cells that accomplish this task — lymphocytes — that proved essential to cracking the mystery, and ultimately to unifying the camps of his field.

Fifty years ago this week, Good, Cooper and their colleague Raymond Peterson published a paper¹ in this journal revealing that there are two types of lymphocyte. The insight shaped the course of modern immunology and influenced the study and care of immunodeficiency conditions, cancers of the immune system and the development of monoclonal antibodies — powerful research tools and therapeutics.

…. read further here

p.s. considering the amount of tax-funded research that went into these discoveries over now more than 50 years, maybe society should be getting a better ROI in form of affordable drugs? 

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

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 Herrgård in Sweden!

The Melanoma trial of the future- the trials we want

GSK MEK inhibitor authorised in Europe!

The GSK MEK inhibitor (also Trametinib, now called Mekinist ® has been approved in Europe-  http://goo.gl/xoZwrN

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?

Benefit/risk assessment in patients- really good webinar!

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

http://vitaltransformation.com/2014/05/webinar-the-patients-understanding-of-benefit-risk/


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