GMAN Newsletter – July 2016

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Vol.2 Issue 7 gman.myeloma.org July 2016

 

New Austrian Patient Education Tool

AustrianPETDoctors Iris Herscovici and Anita Hoerburger, in collaboration with Myeloma and Lymphoma Aid Austria, have developed a new patient education tool for those diagnosed with myeloma or lymphoma. Within the tool, information is provided for patients who have been recently diagnosed as a means to help them understand their diagnosis, the medical terminology and their options. Additional resources are given for improving quality of life and maintaining a positive outlook. The tool is currently displayed in Deutsch but can be translated to other languages using Google Translate. Check it out here.

iStopMM Study to Begin Soon in Iceland

DenmarkFlagiStopMM (Iceland Screens Treats or Prevents Multiple Myeloma) is a new innovative study to screen over 140,000 adults over the age of 40 for the presence of MGUS (monoclonal gammopathy of undetermined significance). The study aims to identify and treat precursors of myeloma before the disease develops. With funding from the IMFs Black Swan Research Initiative, iStopMM should be fully underway by the fall of 2016. To learn more about the study,please visit Dr. Duries Blog or our press release.

Slovakian Myeloma Patients Workshop

SlovakThe Slovak Myeloma Society organized a professional event for doctors and medical workers on May 14th which ran in parallel with an event for patients called the Myeloma Patients Workshop.

The patient program was well attended and started with a patient to patient presentation for newly diagnosed patients. Ten patient-volunteers offered advice and assistance to the new attendees on various issues and offered their personal contact information to help with any future queries and problems.

The rest of the program was for all 60 patients taking part from various regions of Slovakia. The morning included an educational talk by prof. Roman Hajek, PhD who discussed clinical trials in multiple myeloma treatment. Pavel Kotoucek, MD also gave a presentation on the Immuno- oncology treatment of multiple myeloma. There was a discussion following these lectures which included personal stories of some patients, in person and through patient made videos.

The workshop brought many new topics and suggestions for future events and a vision to organize similar events to raise awareness and education of patients.

US Push for Oral Parity Sees Continued Success

SPEACUnited States Governors Bill Walker of Alaska and Tom Wolf of Pennsylvania signed oral parity legislation into law, making them the 41st and 42nd states to do so. Oral parity legislation requires state-regulated private insurance plans to cover oral anti-cancer medications at the same rate that they cover infusions. The efforts in Pennsylvania have been sought after since 2009. In Alaska, advocate Eric Johnson testified in front of both the state House and Senate, sharing his story to help the legislators understand the challenges cancer patients face. In rural states like Alaska, patients often have to travel hours to receive care. Oral parity laws are especially important because patients don’t have to travel to receive treatment and can take their medication at home. If you have questions about oral parity, email advocacy@myeloma.org. or visit speac.myeloma.org.

 


To submit a news story for publication, please contact
Raymond Wezik, Global Advocacy Executive, International Myeloma Foundation at rwezik@myeloma.org.

Click here to download a PDF version

 

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