New Physician Based MPN Newsletter Emerges

MPN Updates – New Resource for Physicians

by David Wallace

MPN doctorAs the number of MPN patients continues to grow, the need for innovative, physician-based resources has started to develop.  While patient based (and Foundation/non-profit) websites focused on MPNs have flourished during the last few years, our disease tends to get tossed into the general “blood cancer” coverage, buried deep inside the many pages of existing hematology/oncology journals and other media.

MPN Updates is a new physician based newsletter that will be published 3 times a year.  It will focus on the diagnosis and treatment of MPN diseases and provide awareness of emerging therapeutic agents and their impact on patient outcomes.  While it is sponsored by Incyte through a third-party grant, I found the reporting to be totally non-biased, patient focused and rather informative.

It is encouraging to see a digital newsletter, led by well-respected MPN specialists.  With the inspiring array of treatment options in the pipeline, as well as existing medications, there is a crucial need to better educate all hematologists, particularly those at the “local level” who will treat very few MPN patients.

Faculty Includes

  • Dr David Henry (Editor-in-Chief) – Pennsylvania Hospital, Philadelphia, PA
  • Dr Ruben Mesa – Mayo Clinic, Scottsdale, AZ
  • Dr Jerry Spivak – Johns Hopkins, Baltimore, MD
  • Dr Brady Stein – Northwestern University, Chicago, IL

The premiere issue focuses entirely on Polycythemia Vera, referred to as “The Great Masquerader.”  Sections include – Presentation and Symptom Burden of PV, Patient Profile and Effective Management of PV.

Click here or on the image below to view the Issue 1  

MPN Updates Newsletter #1

 

 

 

 

 

 

Key points

  • “In addition to a mutation in the JAK2 gene, an unexplainable increase in red blood cells is an indicator of PV.”
  • “PV is a progressive disease, and the progression can occur in two ways: myelofibrosis and acute leukemia.”
  • “Progression to acute leukemia typically occurs after a patient’s disease has progressed to myelofibrosis.”
  • “Manifestations of PV are highly variable, in part because this disease changes its phenotype during its clinical course.”
  • “Among the JAK2 V617 positive MPDs, PV is the great masquerader.”
  • “The two most commonly employed strategies for preventing and reducing the risk of vascular complications include phlebotomy and anti-platelet therapy.”
  • “A significant proportion of patients treated with pegylated interferon experience a decrease of the JAK2 allele burden.”
  • “The use of JAK inhibitors is more established for patients with myelofibrosis, but JAK inhibitors are currently being evaluated in clinical studies in patients with PV.”

Summary

I was pleased to discover MPN Updates and share it with the patient community hungry for new sources of information.

It was very well done and may be the beginning of a trend towards better informing doctors on MPNs.  Look for more efforts in this direction in the near future.

Would be nice to have a printed copy in the hands of all hematologists world-wide. Dr Stein’s contribution was noteworthy, and I particularly liked his perspective on the patient profile. I think he is a rising star among young MPN specialists.


About David Wallace

Founder of PV Reporter, a resource for Myeloproliferative Neoplasm (MPN) patients and caregivers. After being diagnosed with Polycythemia Vera (PV) in 2009, I utilized social media to connect with "informed patients" and develop a better understanding of emerging treatment options. My philosophy on patient care is straight forward - "educating the patient is essential, so the patient can guide their physician to meet his or her needs." PV Reporter is a comprehensive resource hub giving visitors vital tools to become "empowered patients."

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