I am truly worried.
Call it arrogant, Call it love But whatever the reason, I am worried. Beyond myelofibrosis, I have multiple co-morbidities, lethal, progressive and incurable. At 82, I have also aged out of all curative options. The problem is not me. I have had a full, good life. And, ever optimistic, I look forward to the next chapter, free of body, time and space, home again among the eternal cosmic elements.
I’m worried about you.
Without MPNforum who is there to stand against the rampant commercialization of our healthcare? Where are the physicians who raised their voices against Sanofi’s radical betrayal of patient and healthcare provider confidence. Who expressed outrage at the need for the FDA to step up and demand Incyte grant clear and prominent space to the nasty side effects of Jakafi? Who else reported on the astonishing depth and breadth of physician and medical institution financial engagement with drug companies and conflicts of interest revealed by the Sunshine Act
In the brutal blowup of the Sanofi Fedratinib trial — perhaps the coldest, clearest example of drug company behavior — only MPNforum interviewed patients, Sanofi officers, investors, physicians to ferret out the awful truth that thousands of us were abandoned at the very end of a Phase III trial. Tossed out like the day’s rubbish to seek what solace we could from our own private doctors. That there were unreported deaths and severe adverse effects on that trial that raised no advance warning signals to investigators or patients. And there was no ultimate accounting, no corporate taking of responsibility, no transparency.
Who will try to wean MPN patients away from our naïve belief that clinical trials are staged for our benefit, that it makes sense to place hope in profiteering corporate testing of chemical molecules in human experiments. The research labs, the university scientists are focused on research and science. The drug companies are focused on profit and shareholder value.
For some of us, the imperfect and risky option of stem cell transplant gene therapy and the early use of the interferons are our current rational hope for a cure. MPNForum has published reams of materials, sponsored open Facebook meetings, traced the history of SCT, interferon , immunotherapy and CRISPR and brought its main proponents like Richard Silver, Nick Kroeger, Hans Hasselbalch, Jennifer Doudna, Zhaohui Yi , George Church, Feng Zhang, Shaoguang Li home to our pages and computer monitors. Who will step up after MPNforum?
Who will point out the cruel waste in failed JAK inhibitor drug trials, the merry go round of changing corporate hands – YMI, Gilead, TargeGen, Celgene, Sierra. Sanofi, Cytopia — after failures to reach clinical endpoints, squandering the time, energy, immune resistance and hopes of thousands of MPN patients?
Who will illustrate how Incyte has papered the MPN landscape with millions of dollars accumulated through sale and aggressive extension of its temporarily palliative billion dollar drug? When physicians, medical institutions, non-profits and commercial organizations depend on injections of Big Pharma capital where are the voices of protest going to come from?
I remember our early innocent days when we came together in solidarity as an MPN patient cooperative to petition the FDA, to investigate gene therapy, to challenge CEOs, to enjoy monthly MPNforum columns by Dr. Arch, Harvey, Jeremy and Mike…and dare to hope for an ultimate cure.
But we do have allies today. After MPNforum we will still have friends:
Caring patients, some supporting us on social media, some carefully following the science. are the core. And we have a handful of physicians on our side. A couple of institutions, too. The MPN Research Foundation and MPN Advocacy and Education, may accept Big Pharma grants, but, Like CR&T. they are driven by commitment to the MPN patient and run by scrupulous people. Together, our allies may not be willing to fully fill the void left by MPNforum but they will never throw us under the bus either.
After MPNforum, who will speak for us?
And if not now, when?