The coming medicine may be gene-therapy - but who could afford it?


We promote "pro-future" arguments at The Alternative UK. We want to turn scary or intimidating technological and biological developments into opportunities for human flourishing - and encourage us to feel capable of shaping these opportunities.

The field of genetic engineering and health is one of the most nerve-jangling for many. Our friend and futurist David Wood has written extensively on the possibilities for health and longevity that we should get ready for.

This story from the New York Times is useful because it shows one of the potential bumps in the road, towards medicines that can attack rare conditions at the genetic and cellular level - and that is sheer cost. See this excerpt:

The first gene therapy treatment in the United States was approved recently by the Food and Drug Administration, heralding a new era in medicine that is coming faster than most realize — and that perhaps few can afford.

The treatment, Kymriah, made by Novartis, is spectacularly effective against a rare form of leukemia, bringing remissions when all conventional options have failed. It will cost $475,000.

With gene therapy, scientists seek to treat or prevent disease by modifying cellular DNA. Many such treatments are in the wings: There are 34 in the final stages of testing necessary for F.D.A. approval, and another 470 in initial clinical trials, according to the Alliance for Regenerative Medicine, an advocacy group.

The therapies are aimed at extremely rare diseases with few patients; most are meant to cure with a single injection or procedure. But the costs, like that of Kymriah, are expected to be astronomical, alarming medical researchers and economists.

One drug, to prevent blindness in those with a rare genetic disease, for example, is expected to cost between $700,000 and $900,000 per patient on average, noted Dr. Aaron Kesselheim, director of the program on regulation, therapeutics and law at Brigham and Women’s Hospital.


Drug makers argue that the prices ought to reflect the value of a curative treatment to the patient. Dr. Kesselheim and other experts are far from convinced.

“We don’t pay the fire department that way,” he said. “When the fire department shows up at a burning house, they don’t ask, ‘How much is it worth to you to put out the fire?’ ”

And this is where the politics (indeed, political economy) comes in. Is it best that the driver of the development of these extraordinary gene-medicines is primarily commercial?

The Archbishop of Canterbury, Justin Welby, warned a few years ago that gene-therapy - not just for rare diseases, but applied to enhancing human faculties - could create super-elites who were rich enough to purchase these enhancements. 

That marketplace is already opening up, and at the heart-breaking end - where parents of children with leukaemia will now be petitioning their health service (or the general public) for resources for this next "wonder drug". 

The sociologist and science historian Steve Fuller imagined how we might collectively, rather than commercially, cope with transforming medical technologies in his book Humanity 2.0. An excerpt from a 2011 interview:

These developments do have the potential to create whole new deep class divisions, maybe not along the lines of the old industrial class divisions, but just as deep. Sometimes, people talk about this as the "knows" versus the "know-nots". Divisions open up along the lines of who has access to all of these potential enhancements. At the moment, the problem is that the state is dwindling away and it is becoming less of regulator of any kind of activity, so market forces are basically determining the development of all these things I'm talking about. And what that means is that the rich get access to them more quickly and the poor get left behind.

For example, in terms of the NHS, we don't deprive people of prosthetic enhancements such as hearing aids and eyeglasses along the lines of income, so we should be thinking about what other future enhancements we want people to have access to as part of being human 2.0.