Research and rationing

Our ability to research pathogens and continually develop drugs or treatments that thwart them is likely to have changed the course of human life on Earth. Without medicines it’s probable our numbers would be severely curtailed through regular outbreaks of communicable diseases. Many of us may never have survived beyond childhood. In the mid 1800’s around 15% of infants died in their first year and many more before the age of five*. Our quest to cure illness and preserve life has, for many years, been founded on our ability to design and conduct well formulated scientific research. 

Roll forward about 180 years and we’re still conducting valuable research, advancing the discovery of new treatments or more effective drugs for the control of human illnesses, even if we remain unable to cure many of the ailments that afflict us. We appeal regularly and insistently to the public at large to help fund gargantuan efforts of scientific and humanitarian endeavour because resources are scarce and without them we might never find a cure.

As a scientist at heart, the importance of research isn’t lost on me. Neither is the dedication of the people who make it their life’s work to find a breakthrough that might just deliver the elusive cure. The process of research is a huge commitment; intense, time consuming and expensive. Resources involved run to millions of dollars yet recent articles suggest anywhere between 95 – 99% of Alzheimer’s and cancer research fails when tested in humans. It’s a high stakes situation for everyone, scientists, funding bodies, those newly diagnosed and those now desperate for new drugs because all else has failed them.

In the U.K. the situation becomes even more desperate when patients are prohibited from accessing new, proven drugs classified too expensive for NICE (the National Institute for Health and Care Excellence) to support. In reality this non-departmental public body ought to be called the National Institute for Health if it’s Cost Efficient because cost plays a major role when evaluating the provision of new, breakthrough drugs. The postcode lottery NICE was supposed to eradicate has been replaced by a national lottery where no-one wins when a new drug is deemed too expensive. At this juncture I’m left wondering whether any of the money I’ve donated to medical research over the last 25 years has achieved anything worthwhile. Continued rationing of life changing or prolonging drugs makes me suspect my small contribution may have been better invested in items to support those undergoing existing treatments. 

Just recently news of significant research grants includes the statement “hope this work could improve survival rates.” We all hold on to this hope but hope alone isn’t enough. Drugs evaluated as clinically effective are rejected by NICE if the price is too high.  Nivolumab is one example, there are many others. So if NICE continues preventing access to new treatments and patients can only receive older, cheaper drugs, what real term improvements can we expect to see?  Have we forgotten Articles 3 and 25 in the Universal Declaration of Human Rights and if so, should we continue donating to clinical research or would our donations be better spent providing respite or hospice care? Once upon a time I’d have argued medical research was money well spent, but as more and more of my friends get caught in the fight between NICE and the Pharmaceuticals my thoughts become increasingly conflicted.  When life is slipping away, it seems better care for the dying is more important.

*In Western societies