EPIC FAIL

To say that a patient failed a treatment is to use fairly common jargon in describing a situation in which the patient is no longer benefitting from that treatment.  That doesn’t mean it is the right thing to say, however….

The Melanoma Patients Information Page (MPIP) is the world’s oldest and most robust online community of melanoma patients.  Many people who read and post on this bulletin board have been doing so for years.  Over that time they have watched people come and go.  They come in crisis:  Just diagnosed and scared to death.  Just learned that their mother/father, sister/brother, daughter/son, neighbor/co-worker has melanoma.  Trying to understand this odd, scary place called cancer.  Some drop off the board because the melanoma is resolved—at least for now—and they need some distance from the anxiety.  Some drop off because the melanoma is resolved in a much darker way.  These are called “melanoma angels”. 

But those who stick around become something very special indeed.  They immerse themselves in this cancer.  They offer advice and comfort, counsel and support.  They are experts, with insights that are nothing short of stunning.  So when someone from this circle of reluctant experts offers feedback, I pay close attention.

I wrote a post on the bulletin board about a new clinical trial that had just started.  I said it was available for people who had failed another drug.  One long-time participant took me to task on my use of language—and rightly so.  The fact is, patients don’t fail a treatment—the treatment fails them.  And for melanoma patients, that failure has happened far too often for far too long. 

The litany of drugs proven ineffective against melanoma is like the tolling of the death bell—dark and relentless.  To some extent, the research community, the non-profit community, and the drug companies have participated in this failure.  We should have clamored for more research funds, should have been smarter in choosing which therapies to try, should have been more aggressive in raising awareness.

Things are changing now.  And changing for the better.  For our dear friends who are now melanoma angels, the changes are too late.  They have paid the ultimate price for the failure of the cancer world.  For those who are still in the battle, hope is the watchword of the hour.  New treatments are coming on line.  New approaches are being tried.  And melanoma is, at long last, getting some of the attention it deserves.  We are faced now with an opportunity to usher in radical change in melanoma treatment.  This is our challenge, and our hope.  Need I say that we must not, cannot, and will not fail.

Tim