MPD Patient Symposia Educate and Empower

By Ann Brazeau

The MPD Foundation believes that an educated patient is an empowered patient who can share what they know with their health care professionals to optimize treatment protocols and be able to fully participate in important decisions for their future care. To that end, in May 2010, the MPD Foundation hosted a patient education symposium in San Mateo, CA. Guest speakers included Drs. Ayalew Tefferi and Ruben Mesa from the Mayo Clinic, Dr. Jason Gotlib from Stanford, Dr. Ann Mullally from Harvard, Dr. David Leibowitz from the Palo Alto Cancer Center and author Joy Selak. For those who couldn't make it, a video of the event is available here.

Patients, family members and physicians are encouraged to attend these programs where they will hear from leading experts in the field of myeloproliferative disorders / neoplasms. Research updates, information on current clinical trials and day to day maintenance of these rare blood cancers are discussed. Open forums are provided for questions and one on one opportunities to speak with the researchers and clinicians. Attendees enjoy meeting other patients in a safe and warm environment.

This fall, the MPD Foundation will host a symposium in San Diego, California. Dr. Catriona Jamieson will be our keynote speaker and will be joined by other leading MPD researchers and clinicians. Dr. Jamieson, MD, PhD, is Assistant Professor of Medicine/Division of Hematology-Oncology and Director for Stem Cell Research at Moores Universtiy of California San Diego Cancer Center. Dr. Jamieson studies the mutant stem cells and progenitor cells in myeloproliferative disorders / neoplasms. Her studies have run the gamut from identifying a promising treatment in the laboratory, to opening and completing the first clinical trial, to target cancer stem cells in humans. Please continue to check our Events page for updates on the next MPD symposium.

www.mpdfoundation.org

Pricing Orphan Drugs

On a daily basis at least one of us at the MPD Foundation office is actively thinking about MPD treatments - mostly how to find more through our various projects. Whether planning a fundraiser, assisting a patient support group coordinator or looking at grant proposals, everything points back to creating an opportunity for MPD patients to live better and live longer. But recently the issue of access has taken up more space in our thoughts.

For many MPD patients, getting their diagnosis is a first step in a complicated path. There are many layers to get through in pursuit of good care, including diagnosis, finding the right physician, choosing among treatment options and dealing with insurance. It is in this last step that many MPD patients face frustration. There is still much to learn about Myeloproliferative Disorders; insurance companies and Medicare are dealing with a learning curve in how to classify PV, ET and MF and how to categorize treatments not to mention how to price them appropriately.

This scenario isn't specific to MPDs, as an article in American Health & Drug Benefits points out. Orphan disease treatments in general pose an issue for health coverage providers and consequently, patients. Insurers vary on how they interpret FDA rulings about the use of a drug. For a hypothetical example, if a drug is developed for sickle cell anemia specifically but research has found it is also useful for polycythemia vera, insurers don't necessarily provide coverage for that treatment and will not agree with each other on standards.

Our hope is that as research advances and more treatments are approved insurers and Medicare develop the flexibility to address orphan diseases like myeloproliferative disorders in a manner that works for patients. 

www.mpnresearchfoundation.org

Introducing the MPD Foundation's official blog

The MPD Foundation is a decade old this year. We are currently waiting for proposals to arrive for the 2011 grant cycle and are looking forward to continuing to hold patient-education symposia, the first of which was held in May 2010. We continue to distribute MPD brochures to doctors and patients around the world and keep up to date with scientific discoveries pertinent to MPDs.

We look forward to sharing what we’re working on and thinking about here – the MPD Foundation’s official blog. We’re also interested in hearing about what is on your mind. Please feel free to use the comment section to let us know what you’d like to hear more about. 

www.mpdfoundation.org