Advocacy and Hypoparathyroidism in the Twenty-First Century
As the medical community becomes more specialized and medical costs continue to increase, physicians divert thought toward matters of economics and maintaining the health of their medical practice and taking precious attention away from maintaining the health of their patients. It becomes necessary to find methods of bridging the gap between patients and medical providers so as to keep that relationship at the heart of medical care. Patients who have been diagnosed with any of the thousands of rare medical disorders are even more susceptible to being shuffled between specialists or left on their own to navigate a healthcare system strained for the resources to provide effective day-to-day care. It is therefore hard for the rare-disease patient to find a place to belong.
Patient advocacy groups, like the Hypoparathyroidism Association, Inc., have been able to help bridge the gap between physicians and patients. The structure and activities of the Association result in patients being more effectively managed for their hypoparathyroidism because of the service it can provide to patient and physician alike. The key lies in empowering the patient through education and support so that they can make better connections with the medical community tasked to care for them.
We will discuss the challenges facing the hypoparathyroidism patient and the role the advocate plays for them. The principles discussed herein can be applied to any of the thousands of other rare medical disorders and the people suffering with them.
KeywordsPatient Advocacy Patient Advocacy Group Fellow Patient Rare Disease Patient Recombinant Human Parathyroid Hormone
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