Blog Peter Kapitein – Structurally dissatisfied

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Posted on Monday, January 27th, 2014 at 8:09 AM by

This morning I had a conversation with one of our patient advocates about making drugs available to patients. About the fact that this takes a long time and why this is. And worst of all: that there are drugs in the pipeline that may work very well for patients, but that have not yet been made available. First ‘all sorts of procedures must be followed.’

Recently, I saw the documentary How to survive a plague about HIV/AIDS activists in the ACT UP patient advocate group. I was deeply impressed to see how people facing a certain death sentence fought for their rights and battled to achieve that the drugs development process was dramatically accelerated and drugs were approved much faster than before. ‘We are dying and you are doing nothing for us’ is what they told the US Food and Drug Administration officials in no uncertain terms. The ACT UP people occupied the FDA building and did not leave before their questions were answered. Why is it taking so long? Why aren’t you working harder for us? Why do you decide whether or not drugs become available to us? Who’s dying here, anyway?

The enormous commitment shown by the ACT UP group during the eighties and nineties was one of the main reasons why drugs development and approval was finally speeded up. I was impressed by the interview with Dr. Anthony Fauci, the then head of research at the National Institute of Health (NIH). He responded to ACT UP’s bitter reproach by honestly telling them: ‘At the NIH, we didn’t tell the researchers what they had to do. It’s true that we allowed them to do what they thought was best.’ Admitting that ACT UP was right. The ACT UP activists also made an unrelenting effort to be included in committees occupying themselves with research, approval and trials. And what struck and impressed me in particular was that these people knew exactly what they are talking about.

And this is precisely what it is all about. As long as patients do not manage to acquire the right position and are not accepted as an equal partner in discussions and decisions, nothing will change. Research will continue on its own path and pharmaceutical companies will only produce those drugs that they consider to be important to their turnover and profits, and regulators and enforcers will be allowed to continue their fixation with procedures and we will still call cancer an urgent problem ten years from now, and even more people will die.

We should ensure that patient advocates determine the cancer research agenda. The argument that they are unable to is simply invalid. They are very intelligent and hungry for new knowledge and are driven by a unique force: losing their own lives and those of their loved ones. Good patient advocates are very well able to talk sensibly and freely to good researchers about what to examine, and they are heard. I see this every day, but there is no sufficient clout.

Patient advocates should also be involved in setting up industry trials, which they have proved to be able to do. Merck at the time involved HIV/AIDS activists in setting up trails, asked them for their opinion and involved them in decisions. So don’t say that it is impossible.

Regulators should be told that patients will not and cannot wait any longer. Too many are dying still. Not only should trials be set up better, but also faster. There are all sorts of safety regulations before drugs are introduced, but what about patients who are dying? They are prepared to do anything to survive, and it is their lives we are talking about. Here too, we can learn from ACT UP. People with AIDS called these not yet thoroughly tested drugs, ‘What the hell drugs’, meaning there is no harm in trying, it can’t get any worse. We are letting down people who are dying by denying them drugs that are in the pipeline, but have not yet been fully tested. One of our gravely ill patient advocates hit the nail on the head by saying: ‘There is only one thing worse than false hope, and that is no hope at all.’

We should pool our resources and not be satisfied with the work that we are doing. What we are doing is not enough and we are not making enough progress. This is why we should call in help. And there is help available: patients and patient advocates. They are well-educated, motivated, informed, eloquent and structurally dissatisfied, which is appropriate to a life-threatening situation.

Peter Kapitein, Inspire2Live
Never ever quit!

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