The NYT just published this editorial.
Pay careful attention to the final sentence in the byline.
I have attempted to explain to people why my own expectations per another life extending drug are low to nil. With ALK+ patients comprising 4-6% of lung cancer patients, it was surprising that ALK inhibitors were ever considered a viable investment. I am exceedingly grateful that they were, and that second and third generation ALK inhibitors were also produced.
However, by the time you get to where I am at (1, 2, 3 exhausted), that 4-6% is a much smaller figure, due to the fact that even though survival stats for ALK+ patients have improved significantly (6.8 years median–I believe), overall mortality is still high. So now I, and other outliers, are essentially in the rare disease category. There is very little financial incentive to produce new therapies that benefit a handful of individuals. I have argued that clinical trials should not be seen primarily as science experiments nor as a way to enrich shareholder’s portfolios—rather they are social contracts. And as part of that social contract, outliers should not be left high and dry simply because we are now a poor investment. You don’t send soldiers to war and then just leave them on the front line with no way home.
And then there is this chilling line part way through the editorial: ‘For example, there are huge incentives to bring certain new cancer drugs to market, even when those drugs have little impact on survival rates.‘
They’re talking about us. And if you follow the link, it will lead you to a previous editorial with this paragraph: ‘Based on the data we do have, the thousand-plus cancer drugs now in clinical development are quite likely to help only a handful of patients, and only a very little bit: According to one recent study, targeted cancer therapies will benefit fewer than 2 percent of the cancer patients they’re aimed at. That reality is often lost on consumers, who are being fed a steady diet of winning anecdotes about miracle cures. Those stories are heartening, especially if you or someone you love is one of the people battling the long odds who could be helped. But they omit a lot, including the number of people who aren’t saved — or even helped — by a given drug, and the likelihood that any given success would have occurred even without the new medication.’
Viewpoints such as this are why I support Dr. Alice Shaw’s transition to industry, as she has an entirely different perspective owing to her years spent in clinic. She can instill that sense of urgency as well as a moral imperative: Alice will put patients first. Fingers crossed that she is successful in identifying innovative treatments and that she is able to help bring them from bench to bedside quickly.
I view my role as a canary in the coal mine. Those of you who are fortunate enough to be walking the same path–this is of great concern to you as well. We cannot afford to be complacent. It is not enough to simply support medical research, we need to make sure there is focus on long term solutions. It is a hell of a note to make it this far only to realize that your status as an outlier means your life is suddenly worth not more, but less. In the topsy turvy world of cancer, progress is a negative and rare, not a commodity at all.
As part of the fewer than the purported 2% to benefit from new cancer drugs, I want to let the world know that my continuing survival is not a trivial thing. That it means the world to me, my children, my family, my friends. To those who have benefitted from my participation in early clinical trials. Stakeholders and shareholders alike.
A good return on an investment, I should say. But in this society that is driven not by altruism but rather commerce, I have become a diminishing return.
That’s a bitter pill to swallow.
Linnea 🌀 Thank you for this… There should be a “Schoolhouse Rock” for clinical trials; so complicated and important. As someone on their second Phase 1 trial, I really appreciate your explanation and passion around this. 👏🏻👍🏻
Separately, hugs to you for continued sass and strength, and cheering for Alice: she is the superhero we all need and so glad she’s your angel. – Colleen
On Sun, Nov 3, 2019 at 7:15 AM life and breath: outliving lung cancer wrote:
> linnea11 posted: ” The NYT just published this editorial. Pay careful > attention to the final sentence in the byline. I have attempted to explain > to people why my own expectations per another life extending drug are low > to nil. With ALK+ patients comprising 4-6% o” >
What can I do to help?