Open Letter To NYU
I am angry.
I trusted the ethics and reputation of your institution implicitly, and in return I was misled, I was used, and my safety was disregarded by your researchers. And the more I think about some of the things that happened during and leading up to those studies, the angrier I get.
I was told that my participation could possibly result in a delay of treatment for up to 60 days. However due to NYU’s delays and false-starts, that length of time was far exceeded, to the tune of several months.
Do you know what it’s like to come off of an amphetamine (Adderall), antidepressant (Wellbutrin) and a benzodiazepine (Xanax) when you’re in active PTSD recovery? Do you know how painful the physical and psychological withdrawals are? About how your body aches for days, as if you have the worst flu of your life? The exhaustion? The return of flashbacks, the white-knuckling through nightmares? The incredible, overwhelming sadness and hopelessness?
Do you know what it’s like to go through that a grand total of 5 TIMES for participation in just three studies because the institution you’re working with keeps having false-starts? Do you have any understanding of what it’s like to hear your husband tell your children, “Mom’s off her meds again…” and it NOT be a joke?
With some of the world’s leading medical experts on staff, NYU understood the dangers of having an on-again, off-again relationship with psychiatric medications. Since my experience with NYU, the medications that I had taken for a decade don’t even work for me anymore. I cannot tolerate them – they no longer provide relief of my symptoms.
And where exactly does NYU stand on looking after the safety of their human research subjects? I was headed to the airport for the several hours-long journey home just minutes after having an arterial line removed…wondering how am I ever going to manage my luggage with this PRESSURE DRESSING on my radial artery?
NYU’s poor planning caused me to be stranded in the middle of an airport terminal in the middle of the night with said pressure dressing to care for. And even though I reached out to NYU for help, I was on my own.
Speaking of subject safety, is it protocol to give a mentally ill subject an experimental, potentially mind-altering medication, subject them to over 10 hours of examinations, triggering sessions supplemented by electric shocks and brain scans, and then usher them out the door at 8 o’clock at night in the middle of New York City and tell them that they have to find their own way back the hotel?
I’m not done. How is it that things were so lax that I was administered an accidental EXTRA DOSE during the trial? And then we just continue on, like nothing ever happened?
The FDA and I agree on something: your aftercare was practically non-existent. I was overwhelmed to the point that I could not speak, could not think and could not even move. I reached out to NYU for help, and again, I was on my own.
That horrible state that I was in finally did settle down, and in it’s place have been unexplained panic sensations/episodes that come in clusters every few weeks.
I was promised that I would be told no later than May 2015 regarding placebo versus medication administration. It was only after one of these new panic-sensation episodes developed into a full-blown grand mal seizure that sent me to the emergency room that NYU finally released the information to me – in March of 2016.
I waited TEN MONTHS to find out if I had taken the placebo. I asked NINE TIMES for the information. And each time I was told: “Pfizer OWNS the data.” or “Eli Lilly OWNS the data.”
I spent almost an entire year knowing only that the lead doctor had suddenly left NYU; that all the trials were canned; all the data was trashed; and that the FDA is investigating.
Can you please just try to imagine what it’s like to wait for 10 months for answers? What it’s like to hear of the FAAH inhibitor related deaths in France, and STILL get no answers? Can you even fathom just how terrifying that is?
I had to talk to a news reporter just to try to get any information – since you weren’t very forthcoming with information, the New York Times was kind enough to guide me in the direction of the FDA report. I have to tell you, seeing my name in a national print publication with the words “sexually abused” and “mentally ill” was one of the most gut-punching experiences in my life.
It was worth it.
I was promised transparency and control in the beginning. I trusted and shared my most intimate pain with you and that trust was violated. Despite endless assurances, you didn’t do YOUR part to protect me.
From preparation for the studies to recovering from them, it’s been over two years and counting.
I have suffered. My family has suffered. And while I did indeed agree to be a part of these studies with the understanding that it would be difficult, much of that suffering was unnecessary and as a direct result of either negligence, incompetency or dishonesty by those responsible for my care at NYU.
Now that I am not treading on eggshells trying to get information, I can freely say that I am appalled at how I was handled.
Is this the standard of care for human research subjects that you strive for? Is this what people get for volunteering to put their lives in your hands? I did EVERYTHING that was asked of me. I held up my end of the deal.
Why couldn’t you do your job professionally – especially with so much as stake?
I want nothing more than to move on and put this all behind me, but at this point…how exactly am I supposed to do that? With the article coverage about this experience being shared across multiple publications, I am still being contacted by those who also wish to write about it. Every time I start to think about my experiences I become distressed. I have ongoing health and wellbeing issues that are not being addressed. Those panic episodes? Still there. Still happening. Thousands of dollars of unpaid medical bills, and nowhere to turn.
I just want this to all be over with so I can move on with my life and my recovery.
Things must change. You can’t DO this to people. I truly hope that NYU and all the other parties involved in this are held accountable…for a change.
AKA: “Subject 11”
Former Human Research Subject.