Why Patients Need to Be Heard At Medical Congresses: The Patient's Perspective on CLL (chronic lymphocytic leukemia)
Here is the hope that this season of miracles offered up its miracles to those of us in need.
And if the time is not right for miracles, then let's at least do what we can to be sure that the researchers and doctors acknowledge and take into account our concerns about what we want from our providers, our therapies and our clinical trials.
If I can't get the miraculous cure, I want some incremental movement towards better therapies for all us.
This is the second part of a 5 part series on my take on the very specific topic on what the patients' voices should be part of medical congresses.
And that is just the start.
Our voices must be heard at the meetings between researchers and funders on how trials are set-up, at IRB (institutional review boards) that approve those trial designs and any subsequent revisions, payors who decide what treatments get covered and what don't, and of course in our doctors' offices when we are planning our therapy using a shared decision making model.
Listen to the first brief section monologue published on Dec 4, 2014 where I introduce myself
Here is the next segment.
Please let me know what you think?
More soon.
And if the time is not right for miracles, then let's at least do what we can to be sure that the researchers and doctors acknowledge and take into account our concerns about what we want from our providers, our therapies and our clinical trials.
If I can't get the miraculous cure, I want some incremental movement towards better therapies for all us.
This is the second part of a 5 part series on my take on the very specific topic on what the patients' voices should be part of medical congresses.
And that is just the start.
Our voices must be heard at the meetings between researchers and funders on how trials are set-up, at IRB (institutional review boards) that approve those trial designs and any subsequent revisions, payors who decide what treatments get covered and what don't, and of course in our doctors' offices when we are planning our therapy using a shared decision making model.
Listen to the first brief section monologue published on Dec 4, 2014 where I introduce myself
Here is the next segment.
Please let me know what you think?
More soon.
Labels: Monologue, patient advocates, patient perspective, Treatment decisions. Clinical trial, Video
posted by Brian Koffman at
5:23 PM
7 Comments:
Dr. Brian, well said. Thank you.
Totally agree! Thank you, Dr. Brian.
My thoughts EXACTLY!! It is disturbing to see most of the clinic trials that are available are for relapsed and refractory, which usually means a failure on FCR or BR if you are a "younger" patient <65 years and without 17p deletion. I have 13q14 deletion age 61. My fatigue is life altering although my numbers aren't bad enough for my oncologist to consider treatment. I want treatment that would improve my quality of life without risking worse problems down the road with a second cancer. In my opinion, chemotherapy will never be an option for my treatment. So for now I have no choice but to continue on W&W.
Additionally, many studies require CT scans as part of the protocol despite the fact that imaging studies cannot show MRD negativity. As long as clinical trials continue to use lymph node reduction, organ size reduction as part of the endpoint, the FDA will probably continue to require such imaging which also increases risk for second cancer. If imaging is mandated by the FDA, someone needs to be our advocate for MRI although I understand this is not as sensitive for lymph nodes. However, if we are going for a cure for this disease, imaging will never provide the endpoint data required.
We need more trials for non chemo first line treatment for all CLLers, not just 17p, that do not require CT scans. Someone needs to be our advocate for trials that do not further add to the risk I already have for developing a second cancer. I hope this is the year I can be part of a clinic trial with that type of design so that I can return to my previous level of activity and not continue to watch and wait for worsening numbers, severe infections and worse clones before someone is willing to help me.
Totally agree ! Thank you
I think a lot of this is about money. At a recent appt, I asked my CLL specialist at a major university and as big a name as anyone Brian has interviewed what he would recommend to me if I needed treatment today. He said ibrutinib. Can you imagine how much it would cost to offer people like you and I ibrutinib,idelalsib and ABT199 to take for years on end?
Exactly ! It's all about the $$ not the patient . Am I suppose to go bankruptcy , sell my personal belongings and go live in a tent just to swallow several pills a day . Is that the quality of life that I desire . Think not big pharma and insurance companies.
This is a very important endeavor, Brian--thanks to you, maybe things will change.
I am a dermatologist with CLL for 11 years. Can I suggest we address the CT scan issue from another angle? I have an ATM mutation/11q deletion. A correctly functioning ATM makes a protein that specifically allows for DNA repair after damage from radiation exposure. If I am repeatedly exposed to radiation damage through multiple CT scans, doesn't that lead to more DNA damage to my few remaining normal B-cells,as well as my already abnormal B-cells, not to mention increasing chances for lung cancer, etc?
It's seems as absurd as if I asked all of my skin cancer patients to stand outside in full sunlight for 30 minutes many times a year while I checked their skin for new skin cancers.
I understand the need to participate in clinical trials---but we are not just a bunch of statistics---we are individual people, assuming very real individual risks to our bodies in these trials, and the CT scans should be replaced by some less invasive, less harmful methods of followup. Throw this out to the Radiology community to come up with higher resolution ultrasound---if ultrasound can see such distinct features of my daughter's 12 week-old fetus, with precise size measurements, and date of delivery, why can't ultrasound more accurately size our lymph nodes?
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