Why am I ‘not qualified’ for a cancer study I was already approved for?
Dear John: This email is being sent to you because you are a smart guy and I hope that you will know what to do, because I don’t.
Allow me to begin with the fact that I was a volunteer at the World Trade Center disaster site and have a 9/11 condition. Specifically, I was diagnosed with breast cancer.
On April 9, 2019, The Post ran a story titled, “Cancer Rx hits tumors.” I thought I was a good candidate because I have metastatic breast cancer, which is a polite way of saying the cancer spread to other parts of the body.
I was on hormonal therapy for five years, but my cells have never been tainted by chemotherapy. My cancer advocate assisted me in applying for a trial at Mount Sinai Hospital.
The first thing that Mount Sinai asked for was all of my medical records.
I am a baby boomer, and am sure that the doctor who gave me polio vaccinations and treated my measles retired years ago.
So I put together what I thought the hospital would need concerning my present condition. Of course it was not everything that it needed, but rather than giving me a list, they used the “Oh, gosh, we also need …” method — which is why the process took so long.
On Sept. 27, I received a text that I qualified for the study.
I spent the weekend composing a note to Carl Icahn, thanking him for the Icahn School of Medicine, where Merck Sharp and Celldex Therapeutics are conducting a trial.
When I arrived at the hospital, I filled out paperwork, then was called in to a back room. It was not for a physical exam. I was not asked to disrobe.
The first thing the doctor said was that I did not qualify for the same trial I was told I was qualified for six days prior.
After months of collecting data, it took that doctor less than 48 hours to get me an appointment with another doctor. When I called the new doctor’s office, I was informed that my medical records would be needed.
At first I thought that Mount Sinai was just passing me along from one doctor to another. But the fact that my data had not been put into its computer system made me wonder if I was actually a mark in a classic bait-and-switch. It needed time to select what it was willing to share, not wanting a paper trail to follow me.
I have been living with cancer for six years, and have seen over a dozen doctors. Some of them were good and some of them just wanted to make money doing tests. But I never had a doctor do an exam without asking me to remove some clothes. L.G.
Dear L.G.: I’m very sorry to hear about your medical condition. And I wish I really was smart enough to come up with answers for you.
My educated guess is that, after looking at your medical history, the people conducting the cancer trial decided you weren’t a good candidate. Because of privacy rules I can’t find out any more, but you should ask.
I’ll send you the name of someone at Mount Sinai who should be able to give you the answers.
Just so you know, I tried very hard to get you into that trial, but haven’t been successful. I’ve known Icahn, who is a major contributor to the hospital, for a lot of years, and if he could get you into the trial he would. He’s a good guy.
But this would be a decision made by the doctors, not by someone who happens to have his name on a building. And the hospital has its protocols on tests. So there isn’t much it can do, either.
Let’s hope that putting this in the paper generates reasonable ideas from readers.
I understand your desperation. That’s why some publicity makes the most sense to me at this point.
I wish you the best. Let me know if you get any results in your quest for treatment, and I will pass any ideas on to you.
Any ideas out there?
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