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Patients Against Lymphoma


 About Lymphoma > Patients Can't be Research Bystanders

Last update: 04/30/2013


Here's a very brief summary of our experience at the AACR conference on Molecular Targets and Cancer Therapeutics. As the conference name suggests these were very technical scientist-to-scientist meetings and presentations.  As such, it was a challenge to integrate patient perspective into the many excellent conversations we had ... but we managed to remind:

* of the need to identify biomarkers to predict toxicity -- that it's important to fail fast in order to concentrate on treatment candidates that would be safe enough to apply in clinical settings as recommended by the FDA.

* of the competition for patients in trials; and that it can be important to consult informed patient on trial design; and to try to harmonize research goals with the clinical needs of patients in various clinical circumstances.  To reach enrollment goals, a study must compare favorably with all other standard and investigational studies. Targeting the investigational drug to the characteristics of the patients tumor is likely to make clinical trials more attractive to patients and to their treating physicians ( the benefits of the National Biospecimen (NBN) approach to clinical research to patients and to drug sponsors).

* of the need to modify intellectual property (IP) law so that patents on molecular "defects" in cancer cells do not restrict competition to develop drugs to target these defects. 

Coincidentally, this concern was raised by a speaker at the conference, and it caused quite a stir.  Indeed, most researchers I spoke to felt there is a need to modify the IP rules.  One suggestion is that we might reduce the patent life on "defect" discoveries, and provide incentives for broad and faster licensing - a way to maintain incentives to discover molecular defects that drive cancer, without inhibiting competition for development of drugs that target the defects.  Probably this is not a new idea among researchers, but I think the patient communities and our representatives in government need to be made aware of this significant obstacle to translational progress.

I came away with a deeper appreciation of the complexity of different cancers, but also with a conviction that pre-clinical researchers are on the right path.  The task is to unravel the fundamental molecular defects and pathways that cause malignant behavior in different cancer types, and to selectively target these defects to maximize effect and minimize toxicity.  It is simply awesome to contemplate how much has been achieved in terms of basic knowledge, and how new tools are primed to accelerate our understanding exponentially. 

Indeed, we are in a revolution that will lead to the discovery and selection of treatment based on the molecular targets (such as STAT3, Myc, bcl-2, Src, angiogenesis factors, ... ), instead of by cancer cell type (breast, lung, lymphoma...).

Is this not also a signal to advocacy groups -- representing patients with different cancers -- to unify our efforts?

I can't help but believe that we already know enough about cancer targets to dramatically improve the treatment of lymphomas, we need only do the hard work of characterizing the variations of targets even in the same diagnostic categories.   For example, follicular lymphomas all look like sedans on the outside, but they often have very different engines under the hood.

Importantly, cancer survivors cannot be bystanders.  The metamorphism in cancer research, described by Dr. Von Eschenbach, *requires* our participation in order to be fully realized, because the discovery and translation of this knowledge, again, is dependent on standardized capture, storage and analysis of tumor and normal tissue.  Comparable cells.   Enabling identification of patient-specific targets.   We already know that diagnostic-specific protocols are not good enough, and we know why.

I believe that cancer patients and caregivers can accelerate basic and translational research by identifying centers that are enabling research of the highest quality, and by contributing tissue to these centers.  This will make it possible to match existing and investigational drugs to patient-specific molecular targets.  This approach could be a way to bypass even very good centers that are, unfortunately, more interested in ownership than in sharing - or moving these centers to change IP policy in ways that accelerate the benefit to cancer patients, present and future.

Finally, I wish to express my thanks to AACR for the invitation to exhibit at the conference.


Karl  Schwartz BA, MFA
President, Patients Against Lymphoma

Caregiver and Patient Advocate

Patients Against Lymphoma
Education, Support, and Advocacy

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