The dark side of genetic medicine

 kw: book reviews, partial reviews, nonfiction, medicine, genetics, corruption

I began to read The Tyrrany of the Gene: Personalized Medicine and its Threat to Public Health, and soon realized that I could see where the author was going. The Introduction and first chapter lay out his thesis. I read the last chapter, titled The "Gleevec Scenario", and for me, the picture was complete.

Genetic Medicine, AKA Personalized Medicine and Precision Medicine, is the current fad in medical and pharmaceutical circles. However, it is miraculous for a few, useless to most, and incredibly expensive: even the few who can benefit from a precision therapy cannot afford it; without a very robust insurance plan (hard to find or afford), they often cannot even afford the copay.

The Introduction features the sad story of the author's father, who died of lung cancer thirteen months after trying to get out of bed one day and finding that his legs were paralyzed. A metastatic cancer had damaged the nerve trunk to his legs. He had fourth stage lung cancer. When one of the bits of cancer was surgically removed and tested genetically, it was found to be susceptible to a new medication that helps a few percent of lung cancer patients. The cost was a few thousand dollars per month. What kept this from becoming a million-dollar story? The father's life was extended by only a few months. At first, the tumors receded and his body began to heal. He was able to wiggle his toes. Then the tumors became resistant to the medication and resumed growing. Whether his life was extended by two months or ten, from his original situation, is not known. What is known is that the "miracle" was temporary. The author cherishes the memory of those few extra months. Fortunately, his family could afford the medication over that period of time.

Why are such treatments so costly? The author tells of medications that can cost tens to hundreds of thousands of dollars monthly. The reason, we are told, is that it costs millions or tens (or hundreds) of millions of dollars for a pharma company to research and test a drug, and to comply with all the regulations to bring it to market. If the number of people who can be helped is only a few thousand, or perhaps a million, the sunk cost has to be recouped by high prices. This is true, but the last chapter focuses on another factor.

When Gleevec was developed it was miraculous, for a small number of patients. Here, "small" is in proportion to the millions of people who have a certain kind of leukemia that Gleevec can't help. The number of people that could be helped was still large enough that the original developer and manufacturer, Novartis, made billions of dollars in profit. Right away I smell a rat: Gleevec did not cost billions to discover and bring to market. Its cost could have been reduced by a factor of ten and Novartis would still have made tens of millions in profit.

The second factor is "Because We Can". The last chapter shows that over time several medications similar to Gleevec were developed, and then put on the market at even higher prices. So much so, that when generic Gleevec appeared (after a few years of legal delays of the end of patent protection), the generic cost more than the original had at the beginning!

The pharmaceutical industry is an astonishing mixture of blessing and curse. Let us not forget that "big pharma" is the largest lobbyist in Washington (and other national capitols in which lobbying, AKA bribery, is permitted). Yet many, but probably not most, of the industry's products are lifesavers, or at least life-enhancers.

From time to time there is a flurry of interest in radical life extension, and a certain debate arises: If it becomes possible to extend almost anyone's life to 150 or 200 years, but it costs a few million dollars for each extra year, is it ethical to develop it? If only the super rich can afford it, won't they become an oligarchy? Of course, America and other Western nations are already de facto oligarchies, and many of the super rich are already taking advantage of better medical treatment, and frequently have longer lives than most of us. Precision/Personalized Medicine fits right into this scenario.

We have to think this through…except most people are unwilling to think, living on autopilot. 

The author's second theme is public health. There is less emphasis on public health measures as more and more funding and interest are focused on genetic medicine. This is a mistake. Public health advances such as separating sewage from drinking water sources and promoting hand washing have been responsible for most of the increase in average life span and general health since the middle-to-late 1800's. We still have more to do, but now it is being done more slowly or is neglected.

I read an article or book by Lewis Thomas years ago, about the three kinds of medicine:

1. Medical repair, as exemplified by surgery and cancer chemotherapy. This is the most intrusive and costly.
2. Maintenance medicine, ranging from analgesics such as aspirin and ibuprofen to symptomatic relief such as cough medicines and to antibiotics. Such remedies are mostly in the form of pills or injections and are usually inexpensive.
3. Preventive medicine, not only vaccines and antitoxins but also vitamins and other supplements that improve our health or prevent disease. These are usually the least costly (but not always!).

Public health measures could be considered meta-preventive medicine. They remove causes of disease and damage. The author's father had been a smoker for part of his life. Very, very few lifelong nonsmokers get lung cancer. He also had a couple of other "risk factors", secondhand smoke as a child, and a period of time exposed to asbestos. Had his history been different, all three factors would not have occurred. Yet, the two most prevalent addicting drugs, alcohol and nicotine, still plague a large proportion of the population, causing great amounts of premature death. Further, overuse of sugar is behind "metabolic syndrome", which includes Type II Diabetes and, as in the case of my uncle, frequent amputation of toes or feet, and reduction of life span by ten to thirty years (my uncle died in his early 70's; his widow lived more than 100 years. Based on family history, he could have lived to age 85 or 90).

Public health is not "sexy"; genetics is. But it's more effective for more people.

I decided not to read the whole book because it is suffused with the author's pain, and he had made his points well enough in the parts I read, that I get the picture. It's worth reading at least a few chapters of this book; it may induce you to help with the tough Thinking part.