Spring 2012: Patient advocacy: What it is and what role we play

By Ann Brazeau

Navigating through the current healthcare maze is a source of ongoing frustration. The system is not always understandable and friendly, making it necessary for patients, caregivers and organizations to educate themselves on all the intricacies associated with their diseases, including insurance issues, treatment options, drug development, government policies and overall care. 

Recently, a new trend is emerging and gaining momentum in the area of patient advocacy. In fact, patient advocacy is a burgeoning field. The terms Patient Advocate and Patient Advocacy have a broad range of usages and may be applied to various subcategories of individual advocates and organizations providing various levels of advocacy. 

The MPN Research Foundation has been advocating for MPN patients since its inception. Research in MPNs was almost nonexistent in 1999. To date, we have funded over 33 grants totaling over $8 million. Some of that research directly influenced the new drug developments taking place today. Over the past several years we have been very active on behalf of patients in the following ways. 

The Foundation: 

• Promotes and supports patient support groups in the US and internationally to bring the most current scientific discoveries to the attention of MPN patients and provide a safe forum for patients to discuss their personal issues relating to their diagnosis.
• Lobbied successfully for inclusion of MPNs in SEER data and more accurate ICD.9 codes to promote more accurate counts of the number of MPN patients nationally.
• Actively promotes physician education in MPN science and treatment through face to face meetings and presentations at cancer centers, specifically to hematology groups.
• Continues an ongoing investigation of reimbursement issues faced by MPN patients including the initiation of inclusion of MPN
non-FDA treatments in Compendia used by insurance companies when determining reimbursement issues.
Successfully obtained coverage through CIGNA for off-label use of Pegasys for PV and ET.
• Built the MPNR Foundation’s website to provide MPN information and resources.
• Produces and distributes MPN patient brochures to numerous cancer centers and physicians worldwide.
• Hosts, sponsors and facilitates patient education symposia to bring the experts to the patients and to provide the most up to date information on research, clinical trials, treatment options and general news to empower and equip patients with the knowledge they need when making health care decisions.
• Sponsors the Chicago Roundtable, which is an innovative multi hospital group of Chicago clinicians and researchers dedicated to
providing excellent MPN care and education to patients and physicians. 
• Was instrumental in bringing attention to the Pennsylvania MPN patient cluster that has now received substantial governmental funding for continued research. 

The MPN Research Foundation has been a driving force in research, education, growing awareness and patient empowerment. As a patient driven organization, we will continue to examine ways to improve the lives of MPN patients everywhere.

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