Clinical Trials are an Essential Option for Patients

International Cancer Advocacy Network Provides Personalized Assistance to Stage IV Cancer Patients

08.26.13 | By Stephanie Fischer

I recently learned of the International Cancer Advocacy Network which provides personalized assistance to patients facing stage IV cancer.  I invited Marcia Horn, President and CEO of ICAN, to elaborate on the mission and programs the organization offers.

SF: There are many organizations that provide resources and support for cancer patients.  Can you tell us about ICAN’s mission and your unique niche?

MH: ICAN offers Personalized Medicine Cancer Case Navigation Programs to Stage IV cancer patients and their caregivers, covering all solid tumors and blood cancers.  ICAN's patients hail from all 50 states, most U.S. territories, and 52 countries abroad at last count.  We take time to fully understand the specifics of each patient’s case so that we can recommend specialists and suggest questions for the patient’s medical team. We introduce patients to molecular profiling and whole genome sequencing. In addition, we often help plot a course on other issues in the patient's journey with cancer--whether it be through clinical trial enrollments or research regarding compassionate use. 

Because of ever-growing patient demand - some of which stems from having been profiled in Newsweek and in Pharmaceutical Executive magazine - we sometimes have to put new patients on Wait List status, which is counter not only to our mission but also to our heartfelt commitment. We relish bringing patients back from the brink--especially those who have been "written off" by their medical teams and who had been told that there were no further options. Our patients range from those who have multiple comprehensive cancer center opinions in tow to patients in rural oncology clinics in the U.S. and abroad. 

ICAN patient advocates work daily with members of our Physicians Advisory Council.  For complex and rare cases, we use a Tumor Board or an "all hands on deck" approach with input from medical advisory councils comprised of renowned specialists from around the world.

 SF: You recognize on your website that less than 5% of the nation's cancer patients enroll in clinical trials.  Why should patients consider enrolling in a clinical trial? 

MH: Without clinical trials, drugs can't move through the pipeline.  With over 94% of patients reporting to survey researchers that their physicians never even mentioned clinical trials in general or suggested a trial specific to their history and condition, it is no wonder that clinical trials have such alarmingly dismal accrual rates.  We at ICAN are aiming to change that through a health information technology initiative in development called Remission Coach®.

When patients are at a point at which they are about to exhaust the standard armamentarium for a particular cancer, a clinical trial becomes all the more essential.  There are also promising trials for treatment-naive patients that are well worth considering. We encourage our patients to keep the conversation about clinical trials on the front burner with their medical oncologists throughout their journeys with cancer.

Given the cutting-edge and world class care provided for the cancer patient actively enrolled in a clinical trial along with the ultimate in the monitoring of that patient's condition, it can become the dispositive factor in extending the patient's life while maintaining the highest possible quality of life. From a benevolent perspective, patient participation - which may save their own lives - may help bring to fruition the approval of a promising new drug that may save the lives of other cancer patients fighting a similar battle.  In our world - and in the patient's - the right clinical trial is a home run.

SF: How can patients, caregivers or people interested in volunteering learn more about ICAN?

MH: Patients and caregivers can contact us via ProgramServices@askican.org.

We have more than 1100 volunteers at ICAN in 30 departments, where the leadership of those departments lives in 17 different time zones.  As one network affiliate anchorman, in announcing a recent honor to ICAN, put it: "ICAN has transformed from a traditional nonprofit to a global volunteer colossus." 

We can place volunteers in our Research teams and on our Lobbying, Legislation, and Public Education teams (we are hard at work on issues such as oral chemo parity, biosimilars, and the reimbursement of personalized medicine--both novel therapeutics and molecular diagnostics).  We are especially in need of medical editors and biomarkers experts who can revise work product pertaining to specific cancers or cancer subtypes. Potential volunteers are invited to visit http://www.askican.org/volunteer.html or email us at volunteer@askican.org so we can customize a position for them.

As chairman of the newly created Patient Engagement Community of DIA, I want to encourage patient advocates from across the world to become involved in important initiatives seeking to both improve patient outcomes and integrate the patient voice at each stage of the research continuum.

Please join us on Facebook, follow us on Twitter and learn more at www.askican.org. You can also join ICAN’s Group on LinkedIn and add to the discussion!

 

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