As Jews, we lead our lives accompanied by
G-d’s hand, with meaning and connection, through the good times and the bitter
times. Unfortunately, there are a number of families among the readership of the
Where What When that are going
through the bitterness of illness, cancer in particular. A lack of knowledge
and opportunity can heighten the difficulties of these life troubles, whereas
the right information can help bring hope and more meaning to them.
Let me share a
true story that exemplifies this: Mr. L was going through a bitter time back in
early 2016, and I personally witnessed how his dire situation gained a large
measure of hope four months later in June of that year. At that time, I emailed
the following note to my National Institutes of Health (NIH) Bnos Yisroel
Bridge Program interns:
“Today I was
gifted to witness a miracle. It was as close to techias hameisim (revival
of the dead) that you can get without someone actually dying. Since February,
you all have been praying for Tzvi ben
Sorah Chaya, a Jewish patient here in the NIH Clinical Center, that he
should have a complete healing from his lymphoma cancer. Thank G-d, today was
the last day we prayed Mincha in his hospital room because he is now discharged
from NIH – cancer free! Thank G-d! He and his wife were so
appreciative of the dozens of minyanim we held in his hospital room
during the course of his participation in a NIH clinical trial. He told me as I
was leaving how special it was to belong to such a caring community. He now
heads out to three weeks of rehabilitation and then home, G-d willing.
“But the story
does not stop there! As I left his room, his wife was waiting outside in the
hallway. I said to her it was a miracle to see him healed. She certainly agreed
and said that it really was a miracle, with G-d’s intervention seen throughout!
She explained that in January the lymphoma had spread to such an extent that
the staff at Shady Grove Hospital told her to take him home, call hospice, and
let him die in three weeks in familiar surroundings. She told the staff,
‘We don’t do it that way.’ That Saturday night, before his discharge from the
hospital, who shows up but none other than our own Dr. K. (research oncologist
at the NIH, National Cancer Institute (NCI)). He was doing rounds at Shady
Grove Hospital and entered Mr. L’s room. He informed the family about a
possible clinical trial at the NIH Clinical Center. They immediately went for
an intake interview at NIH, and Mr. L was accepted into the trial without even
going back home! There was a hiccup during the treatment, but he was kept in
the study.
“Now, four months
later, I saw with my own eyes as Tzvi
ben Sorah Chaya walked out under his own power from his hospital room,
someone who should have been dead 3.5 months ago. I said two brachos: She’oseh
nes b’makom hazeh and Rophei cholim.”
* * *
It
is with this encouraging story that I begin several articles that will
introduce the Jewish community to clinical trials. They will primarily focus on
cancer, although there are trials for numerous diseases. In my capacity as a
clinical translational laboratory researcher at the NCI from 2007 to 2020, my
laboratory supported the NCI cancer clinical trials with state-of-the-art DNA
and RNA testing. I was involved in many requests for assistance to find
clinical trials and oncologists for rare and refractory cancers that had failed
first lines of treatment; those efforts continue to this day. I have consistently
discovered that patients and their families are unfortunately deficient in
knowledge about clinical trials, are not directed toward them by their primary
treating physicians or oncologists, and once they step into that realm, are
totally overwhelmed by the complexity of finding, enrolling, and participating
in a trial.
In the coming
editions of the WWW, we will explore
together:
Part I: Introduction to Clinical Trials – purpose and
definitions
Part II: Clinical Trial Basics – resources, finding
trials, and knowing what to ask
Part III: How Do Clinical Trials Work? – their intrinsic
and complex details
Part IV: Conclusion to Clinical Trials: There Is Hope –
Q&A
Readers should
know that, while clinical trials do provide hope, expectations for a positive
outcome, much less a cure, cannot be guaranteed; there is risk associated with
participation. This is because, under human subjects’ protections, clinical
trials are first and foremost about the science and the generalization of
medical knowledge for the greater public good. Even if a trial is or is not
successful, the participants help to provide benefit to others from a
scientific, not an anecdotal, basis. Even a failed therapy trial will save
clinicians and other patients the time, effort, and agony of a failed, unproven
treatment.
We hope that, with
G-d’s help, by the end of this series we will have empowered patients and their
families with the necessary basic knowledge, skills, and tools to take a bitter
time and alter it into one filled with more purpose. We pray that new avenues
of meaning and healing may be accessed as they travel their disease journeys.
Daniel
Edelman received his BTL from Ner Israel Rabbinical College, his M.S. in
Applied Molecular Biology from University of MD Baltimore County, and his Ph.D.
in Medical Pathology from University of MD Baltimore. Dr. Edelman worked at the
Food and Drug Administration (FDA) as a Scientific Reviewer for a brief stint
before moving to the NCI/NIH for 13 years as a laboratory manager of a clinical
laboratory supporting NCI cancer research and clinical trials. While at NIH, he
ran a science bridge program for seven years for dozens of young Orthodox
Jewish women seeking a mentored pathway into the sciences; many have gone on to
careers in science and medical fields. Currently, Dr. Edelman
