MPNforum Magazine

 It’s the dead of winter. It’s cold and dark out there.  You know you want to settle down with a good book.   You can’t do better than this.

Harvey Gould, a member of MPNforum’s editorial board, writes a regular column for us (“The Long and Winding Road”). He was previously interviewed in the Forum and he wrote an article about being on a clinical trial for myelofibrosis patients.   And writing a book.

Now Harvey has published a book, titled A Fierce Local, Memoirs of My Love Affair with Ireland. 

Harvey was diagnosed with myelofibrosis in 2000. In early 2011 he became transfusion dependent for a four month period, had a splenectomy, and sustained partial vision loss because of post-surgical complications. He’s had kidney stones and gall stones, has CAD, hypertension, kidney disease, and diabetes. He had surgery to remove his gall bladder, has had two angioplasties, one for the implantation of two self eluting stents, and he’s been hospitalized at different times with kidney stones, pleural effusion, and pneumonia.

None of this prevented him from writing his book. Indeed, he credits the fact that he’s had serious diseases with his ability to have written it because his myelofibrosis forced him to withdraw from the active practice of law and gave him the time to write for pleasure.

From the Amazon.com page… After a twelve-year courtship, author Harvey Gould, a nice Jewish boy from Chicago, marries Karen Duffy, a beautiful, Irish-Catholic lass from Manhattan. Karen instills in Harvey her love of horses, family history, and Ireland itself, and the two embark on twenty years of adventures in the Old Sod…. ” A Fierce Local also narrates Gould’s personal story as he’s diagnosed with a terminal disease and given five years to live. His battle teaches him universal lessons and deepens his ardor for life, his wife, and for Ireland. With humor and pathos, this account shares tales about the country’s people and places-the site of a never-ending love affair.

950 million reasons why you won’t see Jakafi promoted off label for PV….  Now that Jakafi has cleared FDA hurdles and is  already shrinking spleens within our MPN myelofibrosis community, excitement is building that PV and ET might be next. Maybe, since Incyte is sponsoring on-going trials .  But you can expect rigorous adherence to the approved application for MF patients particularly after Merck was hit with a $950 million bill for marketing its painkiller Vioxx.  Merck promoted Vioxx to treat rheumatoid arthritis before the FDA approved it for that purpose.  Merck withdrew Vioxx from the market In 2004 after clinical trial proved it posed a significant risk of heart attack, stroke, and death. The company agreed to pay  nearly $5 billion to settle law suits over Vioxx injury claims in 2007.

Need help covering the cost of treatment?  The MPN Research Foundation has just  listed a couple of places that offer financial assistance to MPN patients in   treatment.  The Leukemia Lymphoma Society and The Patient Advocate Network Foundation.  You can get to their listing here.  And, yes, Jakafi and its $7000 a month price tag is on the list.  You can also get help with your Jakafi script from Incyte. The details are on the company’s Jakafi page. 

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