What happens in Vegas Should Not Stay There
By Molly MacDonald
What happens in Vegas should NOT STAY THERE, particularly when it is a conference for and about the challenges of receiving healthcare.
I spent four days in Vegas last week inside Caesar’s Palace soaking up session after session around healthcare issues that affect patients. The challenge was having to choose between concurrently running educational sessions. (And the fun was the toga-themed networking event).
The Healthcare Advocate Summitt, now in its fourth year, sponsored by CVS and a slew of patient assistance foundations and pharma, has ballooned to 1,000 attendees with a singular focus: improving the lives of patients, and getting them the help they need when navigating the health care system, which includes insurance appeals, medication patient access, navigation, reimbursement, advocacy and legislation.
“The Healthcare Advocate Summit recognizes that the Advocates working directly with the patients a 
nd medical staff can provide critical insights on improving the patient journey. The Advocate is the connector between securing clinical treatment for the patient using the appropriate procurement methods that ensures proper coverage and reimbursement for the patient, and their health care organization.”
As patients, we are often thrust into the role of being our own advocate. And while we are intimately connected with our bodies, we have little to no knowledge of how the health care system works, until we are faced with a health crisis.
My advocacy began with my 2005 breast cancer diagnosis. While I am not an official patient advocate, in that I do not work inside a health care system and I hold no formal certification, I have awarded myself, with distinction, the LEE degree, LIVED EXPERIENCE EXPERT.
In the last 20 years working with patients through Pink Fund has allowed me to counsel and redirect patients to trusted resources. And while I have been educated through various programs like Project Lead with The National Breast Cancer Coalition, have been a novice consumer reviewer with The Department of Defense, reviewing breast cancer research proposals, and sit on a number of volunteer boards, including The American Cancer Society’s Breast Cancer Roundtable, National Breast Cancer Coalition, and Value Based Insurance Design out of The University of Michigan, I am not an expert with multiple letters after my last name, but I know experts who can help.
Just recently I attended and spoke at the ASCO Direct Conference in Lansing, Michigan, where I met Katherine Leng from Hologic. Hologic has a test that helps ER Positive Breast Cancer patients determine if they will benefit from endocrine therapy. The Breast Index test can help patients make informed decisions about their risk of recurrence and the sometimes-challenging side effects of these oral drugs, prescribed for 5-10 years.
A dear friend of mine is taking endocrine medication and experiencing numerous unpleasant side effects affecting her quality of life.
Meeting Katy, I was able to direct her to an informed source who redirected her to another informed source that has now armed my friend with solid data and questions to ask her physician about reducing the dosage or continuing the drug as prescribed.
Whether diagnosed with cancer, an ongoing health-related condition, or a rare disease, one of the best ways to advocate for yourself is to ask to speak to a patient navigator or patient advocate where you are receiving care.
While you may be your own best advocate, do not hesitate to reach out for help. The patient advocates I met at The Healthcare Advocate Summit are passionate about helping patients.