I read something in Scientific American categorized as an advertisement titled, “Putting innovation on the
front burner: NPAF’s blueprint for action on cancer” and I have a response as a Leukemia survivor about clinical
trials. I think the specific paragraph about “Enhance the delivery of innovation through improved communication and
coordination between providers and patients…” made exactly the point I would like to discuss.
I was approached by an unfamiliar doctor with a huge packet of consentment paperwork asking if I wanted to
participate in a trial for anti-microbial medication. Just having been diagnosed with Acute Myelogenous Leukemia
only 8 weeks prior, I was not educated enough on the any of the medications and procedures to feel safe straying
from the most normal tried and true regimen prescribed by the doctor I knew. Had this awesome coordinator I dealt
with, or even my doctor approached me to discuss the benefits, the medications that would be different, and the
importance of these trials (besides the fact that most research I did on trial medication says it generally a last
resort when all other options fail) I would have said yes.
I guess what I am trying to say is the approach to patients could be greatly improved, especially for newly
diagnosed people. I was 33 at the time, so certainly did not need parental consent, but was still scared and
overwhelmed. I was uneducated about the positive impact I could have contributed for future survivors, and not
comforted by the appearance of an unfamiliar doctor when I had been mostly dealing with caring, nurturing females
known for their incredible personalities. In the hospital they provide plenty of reading literature, found some on
the cancer websites, but I was all alone to make all these important life changing decisions. I think the
publication in Scientific American is a great way to spread awareness and hope to see more in the news so people
know what trials are, how to find them, and how to feel about them. Unfortunately, I chose not to participate in
that trial, but I did participate in a research project when I was approached by a nurse I knew asking me if I
would be willing to meet with a doctor to discuss the opportunity.