02.21.17
Gemini version available ♊︎Insensitivity at the EPO’s Management – Part VII: EPO Hypocrisy on Cancer and Lack of Feedback to and From ECPC
Summary: The European Cancer Patient Coalition (ECPC), which calls itself “the largest European cancer patients’ umbrella organisation,” fails to fulfill its duties, says a source of ours, and the EPO makes things even worse
THE merciless EPO is one those things that, once you go further and delve even deeper, reveals much broader abuse which implicates more institutions. Not only European institutions are implicated but international ones too. 2 years ago we mentioned the ECPC's letter, which is still available online [PDF]. One can also access it from the link in this introductory page. We have already published the whole letter as text (mentioned in part 2), but one of our readers called it “another piece of information about the EPO and its bla bla mission, so caring about us citizens.”
“Our experience is not only about fighting cancer, but also about the absurd state of things in this branch of healthcare, the cancer and the many powerful industries connected.”
–AnonymousThe EPO does not even care about its own workers, let alone citizens. One day we intend to show just how poorly if not arrogantly (inflammatory and indignant psychosis) the EPO treats workers with disabilities, illnesses, etc. It always leaves our jaw on the floor because in any other working place the employer would get sued for improper treatment (or mistreatment) of workers. Psychopathology at the EPO is what inflicts and now wholly dominates the management, not ordinary workers such as examiners. For the most part, examiners are the victims.
One of our readers was eager to share an old story which demonstrates just how bad experiences with the EPO’s management can be.
“At the time,” a reader told us, “I was struggling with my mother’s cancer, pancreatic cancer. The fight we went through is a chapter on its own and one day (hopefully soon) [when] I will find time and guts to publish it as a case study, since even if that terrible disease finally claimed my mother’s life, we could obtain some good results. Our experience is not only about fighting cancer, but also about the absurd state of things in this branch of healthcare, the cancer and the many powerful industries connected. Surprisingly, but now not really, EPO management jumped into this tragedy of my family, by exploiting (and in fact provenly aggravating) my nervous breakdown, and exacerbating the difficulties of coping with a deadly disease in my family distant over a thousand km and a severely ill father, with dementia.
“The letter speaks out the concerns that the ECPC has about a recent decision of the Enlarged Board of Appeal, how it is an obstacle and a further hurdle for scientific information sharing and consequently how it actually hampers progress in a field of medical research which is already burdened by questionable practices of keeping secret and hidden vital information. ”
–Anonymous“Well, in that horrible state of mind of those days, I bumped into this European Cancer Patient Coalition (ECPC) group (to me previously unknown) and into De Lorenzo’s open letter to the EPO. The letter speaks out the concerns that the ECPC has about a recent decision of the Enlarged Board of Appeal, how it is an obstacle and a further hurdle for scientific information sharing and consequently how it actually hampers progress in a field of medical research which is already burdened by questionable practices of keeping secret and hidden vital information.
“I was already on a long-term sick leave, having been missing from the Office for about a year, so I mailed it to my colleagues at the EPO to ask about it and they told me that no information whatsoever had ever been disclosed internally about that letter or about its related issue, which was to me no surprise of course.
“But whatever: up until the day I found that ECPC open letter no answer or even the slightest consideration could be documented, from the side of the EPO, and this was already several months after it was issued.
“…up until the day I found that ECPC open letter no answer or even the slightest consideration could be documented, from the side of the EPO, and this was already several months after it was issued.”
–Anonymous“I phoned the Italian branch of that institution, where its president Mr. De Lorenzo mostly operated and following their very own directions I sent a mail to ECPC, precisely addressing the attention of its president, asking whether an answer from Battistelli and the EPO had ever been received. Well, I got no answer from them either. De Lorenzo had been hit by scandals in the nineties in Italy, then being Minister of Health, and had been condemned to a third degree sentence, hence fully confirmed. So, maybe after his own troubled experiences, on which I express no opinion, he saw no [point] either and not much of an interest in messing about the “nasty and powerful” as he might sense EPO and Battistelli are (and rightly so). By the way, I never got an answer from ECPC or from De Lorenzo ever since… Don’t know, maybe he’ll answer, one day. I don’t tolerate politics mess-abouts with a topic like this, especially after what I have been through with mum’s disease and death. The painful efforts of a desperate fight and after that cancer caused the loss of so many people I knew.
“Anyway, and this is the juicy bit for you, after a good while I found a post in the LinkedIn profile of EPO; they posted a stupid pink ribbon, to show their support for the fight against this deadly disease…Ugh! Seeing the nerdy servile comments and thumb-ups on the post, I could not take it. So I took a screenshot for safety and posted the link to the ECPC letter there as a provocative reminder, to point out the hypocritical attitude of the EPO, so disgusting on such an issue. In the image below, a .png file, people should [be able to] see it. It is dated February 2015, so well after the open letter from ECPC and three months after my mother left us.
“Same as when I recently posted, as an ironical pun with the recent infamous habits at the EPO, a link to an exhibition on The World of Spying held in Berlin. Some visits on my LinkedIn profile, often anonymous, started to buzz around. Yet, and as up to present, no answer at all. Not on my post in LinkedIn, nor to the ECPC letter, what would be more important.
“How should I not think for a while, that Big Pharma is also having a say on that and dictates EPO/Battistelli behaviour?”
–Anonymous“Now, the issue addressed by the letter is urgent. It deals with the struggle that research has in pursuing a cure and it points out an obstacle caused by decisions and policies of the EPO. If the EPO believes in what it says about promoting research on cancer, it should at least give an answer. Well, no answer; So the EPO simply and very openly does not care, yet is hypocritical enough to purport the opposite with a stupid LinkedIn post, with a pink ribbon they should better shove up their [expletive].
“This episode has implications: why is the EPO reticent on this issue? Why not have the EBA [Enlarged Board of Appeal] express their views openly, on their very own decisions, either reconsidering or not their position? How should I not think for a while, that Big Pharma is also having a say on that and dictates EPO/Battistelli behaviour?
“The people at the Alltrials.net initiative should be also made aware of this…”
Checking the link of the letter again, it’s still there. “To my knowledge,” our reader noted, “it had never been answered by EPO or Battistelli himself.
“…if ECPC itself fails to further pursue such an important issue they brought up themselves and tolerates a total lack of consideration by EPO, then we might ask whether this is another corporate European money machine…”
–Anonymous“For the record, my direct enquiry by ECPC also remained unanswered: At the time I asked whether they got an answer from the EPO they told me, on the phone, they’d surely answer on this, they would surely follow up the issue and also let me know. But they never did. Which might cast some doubt about the seriousness of this type of initiatives or even about the organisations promoting them: if ECPC itself fails to further pursue such an important issue they brought up themselves and tolerates a total lack of consideration by EPO, then we might ask whether this is another corporate European money machine…
“But this might be a side note… or another story…” █
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Anton_P said,
February 21, 2017 at 9:28 am
The decision the ECPC were taking issue with had nothing to do with clinical trials. The patent was held invalid because of added subject matter.
Alastair Waugh Reply:
February 26th, 2017 at 1:05 pm
The letter from ECPC has everything to do with clinical trials.
In particular, the fifth paragraph of the letter should be enough to reconsider your statement, which appears rather out of pertinence. Whether the decision cited in the letter is motivated by added subject matter is immaterial to the scope of the letter, which raises a rather urgent point.
Considering the notion of existing clinical trials as prejudicial disclosure is an incentive towards secrecy and concealment of vital scientific medical information. It is a hurdle that the state of cancer research really does not need. That is the core of the message of De Lorenzo’s letter.
Even if T0598/12-3.3.02 had been misinterpreted at ECPC, EPO should have been felt rather urgently the obligation to answer and redress the issue, actually even more so in case of a wrong interpretation.
The whistle still blows.