The Hartford Courant, which is my local Daily Newspaper, let me know that they won’t post my Op-Ed. They prefer exclusivity… and other newspapers around the country will also be publishing it. I’m not mad, a little disappointed, but I understand this as a former journalist.
But, Connecticut is where my friends and family live. It’s where the Connecticut Brain Tumor Alliance is. It’s where our patients and caregivers live. It’s where my Drs, Nurses, Hospitals, and Researchers live. So, how do I let them know what I’m doing?
Here’s the Op-Ed I sent to The Hartford Courant. I hope you will share it with your friends. I’d like as many people to know about this!
“Taking advantage of Brain Cancer patients – again.”
I was given three to five years to live over eleven years ago when I was diagnosed with a Grade
III Brain Tumor in 2006. I have had surgeries, radiation treatment and chemotherapy over these
years and somehow managed not just to survive but thrive.
I co-founded the Connecticut Brain Tumor Alliance (CTBTA) in 2006; aided in the legalization
of Medical Marijuana in Connecticut; been voted onto the American Board of Internal Medicine
Oncology Board with all this extra time I’ve been given. I’ve met hundreds of Brain Tumor
patients and their families and continue to be their advocate until the day I no longer can.
I have seen some fantastic results in the Oncology field and I have experienced disappointments.
However, this latest news takes the horror of cancer to a new, greedy low.
NextSource, a 2013 startup drug manufacturer, purchased a drug called “Lomustine”, which had
marketed as “CeeNU” for 40 years. It is a way to treat Brain Tumor patients with little or no
options left. “CeeNU” has been on the market for decades and lost it’s patent rights. NextSource
then simply re-branded the older, generic drug and changed the name to “Gleostine”. The CEO of
NextSource, Robert DiCrisci, then changed the price of the drug from $50 per pill to $768, an
It was like they purchased Aspirin, put a pretty label on it, called it “Crapsin” and charged people
tons more money. That’s literally all they did, a quick rebrand, a new label and a 1500% increase.
One month’s worth of pills, already over $1500 per month, will now cost over $23,000 per
month. Insane prices that have been made more insane by one massively greedy CEO who wants
to build his profits on the backs of dying women, men and children who can barely afford the
treatment to begin with. The stench of Martin Shrekli is back again.
This was brought to my attention by retired Neuro-Oncologist, Dr. Alexandra Flowers, who sent
me a small article announcing this 1500% increase in a Pharma trade mag. They literally tried to
sneak it past patients and medical professionals knowing insurance would just pay the increase
and the patients would keep taking the drug. Just another number, in another line, of a ledger that
keeps growing off the backs of the suffering and dying.
I am calling on all our elected officials and those running for office this year to scream at the top of
their lungs this outrage. Clare Kindall (D), running for Attorney General and the former
Commissioner of Consumer Protection, Johnathan Harris (D), who is likely running for Governor are
just some of our state leaders that support me. Additionally, Robert D. Seigel M.D., Cancer Program
Director, Bon Secours St. Francis Health System & Board of Directors Chair, Medical Oncology
Subspecialty Board of the American Board of Internal Medicine (ABIM) and Neuro-Oncologist Dr.
Alexandra Flowers formerly of Hartford Hospital. They all share my anger at this company and their
CEO, Robert DiCrisci.
I and some of my fellow CTBTA board members, our patients, friends and families have joined
together and resolved ourselves to not let this insanity go unanswered. Please call 1-855-543-
3784 and tell the FDA that this can’t happen. Tell them that regular people can’t keep paying for
corporate profits thru sneaky price increases, this has to stop, this must stop.
Brain Tumors are challenging enough to endure – a 1500% increase in price just adds more pain and
indignity to a terminal diagnosis. For those of us fighting Brain Tumors, the drug “Gleostine” is a
lifeline in a desperate fight. A fight for memories, smiles, the ability to talk and walk again – and
sometimes to just see one more day.
Tell NextSource and their CEO to start working for patients again and not their stockholders and put
the price of Gleostine back to an affordable price.
Co-Founder & President Emeritus of the Connecticut Brain Tumor Alliance (CTBTA)
MEDICAL Oncology Board Member – American Board of Internal Medicine (ABIM)
11 Year Brain Cancer Survivor