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ASH 2014 Interviews on newest CML data, adherence and advocacy

ASH-interviewsAt the ASH Meeting in San Francisco, PatientPower, Brandcast Media, The National CML Society USA and the American Journal of Managed Care conducted interviews with Dr. Michael Mauro, Giora Sharf, Greg Stephens and Jan Geissler.

See the the ASH 2014 interviews covering issues around newest CML trial data and quality of life issues, accessing CML treatment, patient advocacy, treatment adherence in CML, the book "Faces of Courage and Hope".

 

ASH 2014 CML Research Update by Dr. Michael Mauro

Interview of Dr. Michael Mauro by Andrew Schorr, PatientPower

Where do we stand with developing CML research? Dr. Michael Mauro, a leading expert, joined Andrew Schorr at the American Society of Hematology meeting to provide an update. Dr. Mauro shares his thoughts on emerging research and expresses his hope that CML could become a "functionally curable disease."

Patient Advocate Perspective: Stopping CML Treatment After Remission

Interview of Jan Geissler by Andrew Schorr, PatientPower

During the 2014 American Society of Hematology (ASH) annual meeting, Patient Power caught up with Jan Geissler.  Jan is a patient advocate, living with CML 2001, and he is director of the European Patients Academy on Therapeutic Innovation. He provides an update on the latest in his CML treatment, or lack thereof. Like many other CML patients in deep remission, Jan recently stopped treatment. He shares his perspective on his latest treatment decision, what it means for others with CML, and why he’s hopeful about the future.

Accessing Financial Support for CML Medications

Interview of Greg Stephens by Andrew Schorr, PatientPower

With CML now being treated like a chronic condition, how do patients afford a lifetime of treatment? Greg Stephens, founder and executive director of The National CML Society, joined Patient Power at the 2014 American Society of Hematology (ASH) meeting to discuss his advice for accessing financial support and assistance. Greg explains the important role advocacy groups—and patients—can play in championing treatment affordability.

A patient perspective on news presented on CML at ASH 2014, the book "Faces of Courage and Hope" and the patient-friendly summary of the ELN Recommendations

Interview of Jan Geissler by Brandcast Media

Patient perspective on news presented on CML at ASH 2014, the book "Faces of Courage and Hope" and the patient-friendly summary of the ELN Recommendations. Interview with Jan Geissler, Co-founder, CML Advocates Network, conducted by Brandcast Media at the Annual Meeting of the American Society of Hematology (ASH) Annual Congress in San Francisco, USA, in December 2014. 

Giora Sharf Discusses How to Make the CML Patient Voice Represented

Interview Giora Sharf by the American Journal of Managed Care

Becoming active participants in their own care by understanding treatments and becoming a full partner with their physicians is not the extent to which patients with chronic myelogenous leukemia (CML) can make sure their voices are heard, Giora Sharf, co-founder of the CML Advocates Network, said at the 56th Annual Meeting of the American Society of Hematology, held December 6-9 in San Francisco, California. In addition to empowering patients by educating them with materials like patient-friendly guidelines to CML treatment, his network is partnered with companies and researchers so the patient voice can be heard during the research and development process and they can be represented throughout the entire process.

Dr. Michael Mauro shares his thoughts about CML

Interview of Michael Mauro by Greg Stephens, The National CML Society, USA

As the 2014 annual meeting of the American Society of Hematology came to a close, Greg Stephens from the National CML Society, USA, asked physicians and advocacy group leaders what they thought key takeaways were from the sessions. In this short video, NCMLS Medical Advisor, Dr. Michael Mauro shares his thoughts.

Jan Geissler Explains Differing Perceptions for Living With CML

Interview of Jan Geissler by the American Journal of Managed Care

Perceptions of chronic myelogenous leukemia (CML) and how to live with it are very different for patients and physicians, and a strong dialogue is needed to overcome the disparity, according to Jan Geissler, co-founder of the CML Advocates Network. At the 56th Annual Meeting of the American Society of Hematology in San Francisco, California, December 6-9, he discussed how there has been a lot of movement and a number of studies in the past years to help understand how CML patients perceive quality of life and severity of side effects. “Especially in CML we’ve seen a lot of movement, because a very lethal disease, in the last 15 years, has turned into a chronic disease,” Mr Geissler said. - See more at: http://www.ajmc.com/ajmc-tv/focusoncml/Jan-Geissler-Explains-Differing-Perceptions-for-Living-With-CML#sthash.QfxSCxqB.dpuf

Giora Sharf Discusses Intentional, Unintentional Nonadherence in CML Patients

Interview of Giora Sharf by the American Journal of Managed Care

Although there is a clear link between nonadherence and outcomes of a patient with chronic myelogenous leukemia (CML), some patient intentionally stop taking their medication, said Giora Sharf, co-founder of the CML Advocates Network. Some patients are unintentionally not adhering to their medication, sometimes because they simply forget, which the CML Advocates Network hopes combat through its new app. However, there are times patients choose intentional nonadherence, often because the patient does not want to suffer from the side effects of the medication. Another dangerous barrier is when a patient feels fine, and stops treatment because he or she doesn’t see the point in taking it, Mr Sharf explained.

Revolutionizing Healthcare Through Patient Advocacy

Interview of Jan Geissler by Andrew Schorr, Patient Power

During the 2014 American Society of Hematology (ASH) annual meeting, Jan Geissler a patient advocate and director of the European Patients Academy on Therapeutic Innovation, joined Patient Power to discuss the patient advocacy revolution. Jan and Andrew talk about the importance of patients being more in control of their healthcare, more knowledgeable about their disease, and gaining more access to information. They also touch on the concept of the “ePatient” and how it’s revolutionizing patient care and access. Produced in partnership with European Patients’ Academy on Therapeutic Innovation (EUPATI).
 

 

 

 

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