What can I do about it?
November 10, 2013

Fist istockThe other day I attended a gathering of the European Organisation for the Research and Treatment of Cancer (EORTC), where I talked to some 75 doctors, scientists, pharmaceuticals staff, government officials and also, luckily, naturally, patients, about the set-up of new types of trials. And I thought,  “What can I do about it?” And then I thought, “Yes, I can do something about it.” Together, patients can even do a lot about it. In fact, they must do something about it. Because that is in their own interest.

Trials are carried out to thoroughly test new drugs. Does the drug work? Isn’t it too poisonous? Will it kill the tumour and, perhaps, the patient as well? What dosage is required? Once a drug is found safe and effective, it can go to the market and patients may use it. By then, ten years will have lapsed, one billion dollars been spent, and the bottom line is that most patients using it will, to the tune of many tens of thousands of dollars more, eke out bad-quality lives for a few months longer. Drugs work poorly, if at all. We have known this a long time. So why don’t we do something about it?  Why do we spend tens of billions of dollars a year researching drugs that for decades have failed to achieve much progress? With the exception of blood cancers and testicle cancer, the major advancements have all been achieved in early diagnosis, surgery and radiotherapy. We have known this a long time. So why don’t we do something about it? Surgery and irradiation can’t be patented and don’t bring in massive profits. How inconvenient. Drugs, by contrast, can be patented and after ten years, when the patent expires, you can, if you’re clever, modify your drug a little and re-patent it for another ten high-earning years. But India and China are about to change all that. They will just dump the generic drug on the market at knock-down prices and boy, does it make a difference!

But what if you invite patients to the discussion and the decision-making meetings? If the object is to market only drugs that ensure many years of high-quality extra life, at a price that is “acceptable to society”? If a few robust patient advocates are invited in, who do not bow or bend, who come informed to the teeth, are really independent and gifted with a smooth but sharp tongue? If these advocates turn up the heat to scalding level and just say, “We can do better!” like José Baselga at our Amsterdam conference in January 2011. “We are not meant to be here for one or two months life extension.” To me, the operative word here is “we”. If you want something done, never point at others. It’s a problem patients run up against, so patients should be prepared, and allowed, to help. And boy, can they make a difference! Patients should be given at least equal voting rights in the committees that set the research agendas. Because it’s all about their sickness. They can see that more patient data is made available for research, more tissues, more blood. They will see that the research community amalgamates into a real community, where people and firms collaborate unselfishly – for a change, they will see that the publication-citation cycle is broken and remuneration structures are reformed into a culture where science is appraised and rewarded for its contribution to the well-being of patients and their loved ones, of society as a whole. The patients will make a pact with the pharmaceutical industry: patients will gladly volunteer for trials, and the industry will lower the price of drugs to socially acceptable levels. No more astronomical amounts to pay for unnecessary spending on inefficient research projects. That is the kind of help and positive action I imagine patients might have to offer. But it will have to be based on equality and on voting power. Otherwise it won’t work and we will muddle on.  Another month of miserable life caused by the drugs’ “side effects”. Another few hundred billions of research money down the drain. It just doesn’t make sense, does it?

So yes, we can do something about it. And it’s about time, too. Ten million die every year! So take up the challenge and do something about it. And open the door when we patient advocates knock. It will make the world a much lovelier place.