On a sunny, cold day, just off 54th Street and Fifth Avenue in New York City, 200 or so patients and caregivers file through the classic stone entry of the posh University Club. They will mill around red cloth-covered tables, greeting one another, waiting for the CR&T MPN Patient Symposium to begin.
There’s an air of excitment in the room.
For weeks, from Europe, from Chicago news of the successful completion of an experimental drug’s clinical trial had leaked out. Within days the FDA seemed likely to approve ruxolitinib, the first drug to deal with myelofibrosis, a rare, incurable, and sometimes fatal disease.
On stage a small group of specialists and scientists assembled by Weil-Cornell’s Dr. Richard T. Silver, the acknowledged dean of American hematology. All eyes were focused on two young physicans, principal investigators of the new drug, MD Anderson’s Dr. Srdan Verstovsk and Mayo Clinic’s Dr. Ruben Mesa.
Earlier that year, in April, 2011. The first MPN on-line graphic news magazine, MPNforum, a patient cooperative project, was launched on the Internet. The first issue featured an interview with Dr. Claire Harrison, the first in a long seriesof medical interviews to follow. The early MPNforum featured an interview with a patient who posted support messages from his Florida hospital bed to the MPDchat email list. His name Karl Lachevet He died a few months later when his MF progressed to AML. Our tribute to him was sadly the first of many we would publish in the following decade.
This was the beginning.
Entry fee for The CR&T Patient MPN Symposiun of 2011 was a couple of hundred dollars. Plus the costs of travel., a New York hotel the night before, meals New York priced restaurants. Men had to wear a jacket and tie to partipate in the event. But it was a chance to particiate in medical history. Ruxolitinib was on the presentation menu.
.I met Mary Cotter and her husband Brian at our assigned table.. It’s also where I met Bonnie Evans and her husband Joe,. a. During the break I had a chance to talk with Serge Verstovsek, Ruben Mesa, to meet with the CEO and President of the MPN Research Foundation, Robert Rosen and Barbara Van Husen. Over the next decade, each of these people would become friends and were critical to the future of MPNforum.
It was the beginning, The beginning of everything.
That was the beginning, In a room filled with people greeting and jostling around tables freshly laid with red cloths, The first flush of meeting friends, and strangers who would become friends. Legendary MPN specialists talking to small groups awaiting the start of presentation.
These are the early days of MPNforum. For months against he drumbeat of news from the Jakafi COMFORT trials there was an air of optimism. The real hope for a breakthrough, a cure for the incurable. A myelofibrosis drug Finally. And an MPN community coming together.
That was then. This is now.
This week, in the teeth of the 2020 CoVid pandemic, on the eve of another CR&T Patient Symposium, a new era opens with the separation from friends. The tarnished hopes for a cure, the last issue of MPNforum.
On Wednesday, with the arrival of the 11th CR&T Patient Symposium we have come full circle.
In a few days, on October 28, in front of our tablets, cell phones or computer monitors, we will be able to watch and listen to a virtual CR&T meeting. An echo of the past, the event will be structured like the 2011 meeting. plenary session, presentations, questions and answers, workshops.
According to David Boule, while the first section will only permit viewing of presenters and PowerPoint slides, participants in the afternoon breakout workshop sections will be visible and interactive in a ZOOM setting. Instead of greeting friends and meeting patients, isolation and separation. Instead of formal jacket tie, pajamas will do.
Sayonara. Adios. Arriverderci, Shalom See’ya, Auf Wiedersehen, au revoir —
Personally, I know I should have quit long ago. I tried several times. This time it’s real. This is the final issue of MPNforum
Together we did a lot of stuff. Kicked off the Fatigue Project that led to ASH posters, multiple journal papes and some minimal therapeutic intervention. The Zebra Coalition did get FDA spport for a Patient Advocate on clinical trial but no buy-in from drug companies. MPNforum introduced CRISPR and gene therapy to the MPN community taking readers into Jennifer Doudna;s Berkeley lab. Created MAGIC, the MPN Assessment Graphic Internet Calculator with an international consortium of 15 interdisciplinary specialists….and backing from the MPNRF. And together. in the magazine, we published many personal patient triumphs and tragedies and too many memorial tributes.
None of that compelled me to stay I should have quit years ago,.
I was always brought back by some event. The Sanofi scandalous blow up of its Fedratinib trial… Geron’s inflated claims over Imetelstat.. And worst of all Incyte’s penetration into the chronic MPN market via aggressive promotion of FDA approval despite a deeply flawed Jakafi trial and high risk to patients.
MPN patients have other more immediate and personal concerns. Pain. Itching Fear. Doubt. Recipients of Incyte/Novartis financial support were constrained. That left the Forum to sound the alarm. And we did and this time we got results.
Call it arrogance, probably it was, a bit. But I could not quit. No other voice publicly challenged corruption, false claims, MPNforum has been patients’ sole loud voice in the wilderness. How could we leave the field of battle – littered with the bodies of our friends – when vulnerable patients could not protest and respected physicians, many of whom we genuinely liked, remained silent?
Two of my closest MPN companions, literally blood brothers in this battle,died while taking Jakafi.
Whether the proximate cause of death was failure to undergo a timely stem cell transplant as Jakafi masked MF symptoms….or the impacts of the Jakafi drug itself on their metabolism and immune system is unknown. We just don’t have the long term studies, the science to understand. In fact we don’t even yet fully understand the basic forces that create and drive myeloproliferatfe neoplasms.
Despite personal off the record confirmation that the Incyte Jakafi PV trial was disgraceful, I watched as Incyte trumpeted its FDA approval but soft-pedaled warning of dangerous and life threatening side effects in its ASH booth, in literature, in publicity.
Here’s why we couldn’t quit until now. Incyte’s aggressive marketing and generous payments to medical institutions, physicians and nonprofit MPN advocate organizations has corrupted the therapeutic environment and funneled patients without MF symptoms into a longterm deadend. 2014 MPNforum published Jakafi – Fair trial? We submitted letters of objection to the FDA. In 2016 the FDA issued a Black Box warning letter to Incyte. We have reported it fully in the Double Face of Janus listing the known side effects and linking to the FDA’s letter to Incyte.. And when two of the original Jakafi investigators raised the issue of High Risk Mutation arising from Jakafi, we pubished that as well in a Special Report.
Earlier this year, a report from Europe in the journal Cancer, verified poor outcomes of patients once off ruxolitinib. (This link to that report is our last raising of a warning flag. )MPN patients should now know that Jakafi may be useful for short-erm symptomatic relief, most notably splenomegaly, but it carries a heavy burden of secondary effects, has no effect on the progress of myelofibrosis, creates genomic instability, and has unknown impacts on multiple biological systems.
There is a natural order of things. MPNforum arose when there was no graphic, long-read investigative patient-oriented MPN site on the Internet. We helped expand our horizons and helped bring the MPN community together by giving a face and a story to our doctors and patients. We provided a forum for patient and physicians voices and an archive of photos, advice, clinics. articles, lists.