4th year in Attendance
by David Wallace
On October 25th, 2019 approximately 50 MPN advocates representing over 25 advocacy groups from around the world met in Lisbon, Portugal for 3 days. The objective was to share best practices of support and advocacy activities, learn about new MPN research and discuss issues that patients in each country are dealing with.
The annual conference is organized by the MPN Advocates Network, founded in 2013, with a focus on forming a global alliance of MPN advocacy groups.
Medical and Advocacy sessions formed the heart of the agenda. Doctors and advocacy leaders shared their experiences. Some examples include:
- The Psycho Social Impact of an MPN Diagnosis
- How to be an Effective Advocate
- MPN 301, More Details on MPN Blood Cancers
- Clinical Trials
- Living with an MPN
New Groups Formed
It’s encouraging to see advocates with a clear vision create their own organizations providing the latest MPN information, while aiming to improve the quality of life for MPN patients in their country. In the last couple of years, we have seen new groups formed in Thailand, Canada, India, Spain and The Philippines.
Highlighting some key points:
– We are concerned about “fear of progression.” Having cancer may cause psychological distress, including depression, anxiety, social isolation and panic to name a few.
– Self help strategies to tackle anxiety include a “Fight” attitude, exercise, activity and diet. Speaking with other patients is a biggie.
– Access to medication is the top concern in many countries. Hydroxyurea, Interferon (Ropeg & Pegasys) and Ruxolitinib are not available in some countries.
– Anagrelide for ET has fallen out of favor (as per MPN specialist). During the conference, a U.S. MPN advocacy group informed me that patients were having difficulty obtaining the drug from their pharmacies. As it turned out, I learned something new from a colleague (thanks Amy!) at the Leukemia & Lymphoma Society (LLS). The FDA maintains a website specifically addressing drug shortages. I was able to report back to the U.S. MPN group that Anagrelide was in fact, “currently in shortage.”
– Dr. Martin Ellis gave us a primer on understanding mutations and their prognostic value. He also discussed his experience with patients who refused conventional therapy. It is more common among newly diagnosed, patients with multiple illnesses and the under informed. These patients fear the unknown, may prefer a naturalistic/holistic approach, think “not another pill!,” are afraid of needles or have religious beliefs that may impact their decision to refuse therapy.
– What are Patient Reported Outcomes (PRO)? Traditionally, measuring success or otherwise of a therapy or intervention has been part of the clinician’s job. Patient Reported Outcomes are a way of measuring success by the patient. PROs usually use a standardized questionnaire and scoring system that asks patients about the factors that matter to them. They can be seen as a bridge between feelings and data.
– Dr. Claire Harrison provided an update on the pipeline of treatment options for MPN. She shared, there are no standard MPN guidelines around the globe. The guidelines are missing data and should be more patient-focused.
– There are too many inclusion and exclusion criteria for clinical trials, thus limiting patients.
– New drug testing in PV & MF: KRT-232 and Idasanutlin MDM2 inhibitors, Givinostat an HDAC inhibitor, Momelotinib, Pacritinib, Combo trials with Ruxolitinib (long list), CPI-0160 a BET inhibitor, LSD1 inhibitors, Imetelstat, PRM-151, Pentraxin-2 and more. The big takeaway is multiple new drugs are in clinical trial leading to exciting prospects ahead.
Making new connections, catching up with old friends, learning new techniques to be a better advocate while enjoying the camaraderie of fellow advocates on the same mission to improve lives back home made for a successful conference!
