West Hartford resident Tracey Gamer-Fanning, an 11-year brain cancer survivor, is co-founder and president emeritus of the Connecticut Brain Tumor Alliance (CTBTA) and a Medical Oncology Board Member – American Board of Internal Medicine (ABIM).
By Tracey Gamer-Fanning
I was given three to five years to live over 11 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 its 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, a 1,500 percent increase.
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 1,500 percent increase.
One month’s worth of pills, already over $1,500 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 1,500 percent 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, Jonathan 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 and Board of Directors chair, Medical Oncology Subspecialty Board of the American Board of Internal Medicine (ABIM) and Neuro-Oncologist Alexandra Flowers formerly of Hartford Hospital. They all share my anger at this company and their CEO, Robert DiCrisci.
I and many 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 1,500 percent 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.
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