Updated: Jan 13
I used to think handwriting was the biggest weakness of many doctors. But, now I know that's not true. It's the other kind of communication, verbal communication.
A survey of 400 pancreatic cancer patients conducted by the Pancreatic Cancer Action Network with support from Celgene reported the following results:
ONLY 19% of patients reported their doctor discussed clinical trials upon diagnosis.
ONLY 4% of patients reported their doctor discussed clinical trials after first-line treatment failed
ONLY 4% of patients reported their doctor discussed clinical trials after second-line treatment failed
With a disease like pancreatic cancer where developments are desperately needed, these statistics are outrageous and pathetic. The survey results came out a few years ago, so hopefully, communication has improved. However, based on my own personal experience, which I'll discuss in a later post, I have my doubts.
As a member of several pancreatic cancer support and awareness groups on social media, I often read posts from patients and caregivers asking clinical trial questions and advice on whether they should participate. They are on a search for information that should have been shared by their doctors, usually weeks, if not months, earlier.
In the absence of doctor communication, educating patients and caregivers is critical.
What are some of the reasons patients do not participate in clinical studies?
Patients fear they will receive the placebo.
Incorrect. The standard definition of placebo – a drug or treatment that has no therapeutic impact – is not the same as used in clinical trials, specifically studies. No patient who participates in a study receives a fake drug. In experiments, the placebo group receives at least the current standard of care. The other group receives either an entirely new treatment or the standard of care +a new drug. For example, this study randomly pulled from clinicaltrials.gov tests a new drug (Paricalcitol) in combination with Gemcitabine and Nab-paclitaxel. The latter drugs are one of the standard treatments used in pancreatic cancer. A placebo in this situation would be the Gemcitabine and Nab-paclitaxel combo.
In cases where a new treatment is tested, there is more risk, but there is also potentially more opportunity. There are many steps a drug most go through and pass before it is given to patients, and although the specific outcome is unknown, there are guarantees that a patient gets going in.
Clinical Trials cost more than the standard treatment.
For insured patients, federal law requires insurance companies to pay for the trial's standard care costs. Examples of non-standard care that insurance would not have to pay includes:
Tests that outside of standard treatment protocol and conducted for research purposes. However, these situations are research costs, and thus, covered by the trial’s sponsor.
Out of Network costs. If the clinicians associated with the trial are outside the policy network, reimbursement is not required.
Cost should never be a determining factor in clinical trial participation. Researchers and sponsors desperately need participants, and they, along with many nonprofit organizations, work with patients to find funding sources. Help can always be found, insured or uninsured.
Clinical trial sites are too far away from home.
Sponsors understand logistics and travel are often issues, and many times have backup plans and options to prevent patients from having to travel.
Most sites require at least an initial visit, but then researchers often work with local doctors, coordinating local follow up appointments. Apps, devices, telehealth (video-conferencing, etc), and other innovative solutions have come about in the last few years. In many instances, sponsors reimburse patients for travel, and sometimes, they even go as far as to offer compensation for participation.
Studies show patients who participate in clinical trials have better outcomes.
Patients receive highly engaged, personalized care from a dedicated treatment team.
The level of attention participants receive is much higher than the average patient. Clinicians want the trial to succeed. And, success only comes through patients.
Patients receive potentially new, better treatment.
The placebo / current standard of care has its shortcomings, or a trial would not be necessary. With a new drug, there is the possibility that it will be better, offer more. And, regardless of whether one receives the placebo or the new therapy, the dedicated treatment team is there to support, and personalized clinical care is, honestly, priceless these days.
Patients play an active role in the future of disease treatment.
Enrolling in trials provides patients the opportunity to both play a role in their own treatment, as well as impact the future of disease treatment. If a trial is successful, participants pave a better way for other. If one fails, participation is no less valuable; failures lead to new insights and better understanding that will impact future research.
There are over 100 active pancreatic cancer clinical trials. A complete list with detailed information about each study can be found using The Pancreatic Cancer Action Network’s new personalized clinical trial finder. If you've found a trial or know someone how has and would like to share your experience, please contact me at firstname.lastname@example.org. I've love to hear!