The September 12 New York Times carried a piece by Lesley Alderman titled, “After a Diagnosis, Someone to Help Point the Way.” http://bit.ly/2SZ0Er
It was very well done, but as usual with these types of stories, does not paint the entire landscape of the emerging profession. It is unfortunate that the author focused on one advocate who charges $200 an hour for her services. The extensive reader comments on the “Well” blog following the article help to flesh out the story.
There are many individuals out there trying to help others navigate the health care system. I started my company, Patient Navigator (www.patientnavigator.com), after struggling through my 2-year old daughter’s journey through brain cancer. I will never forget the moment of diagnosis and being cast into the cancer universe without a lifeline. Her miraculous survival has taken me down this path now, after a 24-year career in government.
Believe me, most of us doing this are doing it from the heart. I talk to anyone for free and often a simple phone conversation can help overcome a major obstacle. I would never dream of charging $200 an hour. This is not something one does for the money. It’s to make sure other families don’t suffer through what we suffered through and to offer help and problem solving so that they can focus more on their recovery.
Navigating a serious illness affects the whole family, finances, jobs, daily life. There is much more that a medical mentor, patient navigator or cancer coach offers than just help with getting appointments.
We individuals are finding each other and have formed a National Association of Healthcare Advocacy Consultants. We are casting a wide net to bring together like-minded people. To learn more, visit http://www.nahac.com. Our inaugural conference will take place November 13-15 in Berkeley, California.
We have been blessed with our daughter’s survival and I plan to spend the rest of my life thanking God for that through the work I do.
