Like many neurologists, Melissa Ko, MD, wanted to help advocate for her patients, but was unsure how to make the most difference. What transformed that aspiration to a formalized action plan — with help from a former US Surgeon General — are her experiences at the AAN Neurology on the Hill advocacy event in 2009 and, in 2010, the Donald M. Palatucci Advocacy Leadership Forum, a four-day program that educates neurologists on advocacy action planning, media interaction, and grassroots legislation.
Dr. Ko, assistant professor of neurology and ophthalmology at the State University of NY Upstate Medical Center in Syracuse, NY, was particularly interested in advocating for legislative change regarding patient obesity, which has been shown to adversely affect many neurological disorders.
In an interview with Neurology Today, Dr. Ko discussed her experiences with the AAN advocacy training programs and why neurologists need to speak out on behalf of their patients.
DESCRIBE YOUR EXPERIENCE WITH NEUROLOGY ON THE HILL
It was 2009, the year when the conversation about health care reform began in earnest, which elicited an exciting dynamic of camaraderie and facilitated networking amongst Academy neurologists from all over the country.
When I went with the other delegation members from New York State to visit with our various representatives' and senators' health legislative aides, I found them to be highly responsive. For example, we spoke with Ronald Hikel, senior staff and health policy aide to former New York Rep. Eric Massa for 15 minutes about the need to develop a registry for patients with Parkinson disease and multiple sclerosis (MS). We outlined in our proposal what we would require from the registry and asked if Rep. Massa would be willing to co-sponsor the legislation. Just a few hours later, while waiting at the airport to go home, Hikel e-mailed to say the congressman decided to co-sponsor the legislation.
The fact that a short conversation could make an important impact for a Parkinson or MS patient really left a lasting impression on me.
WHAT PROMPTED YOUR INTEREST IN THE PALATUCCI FORUM?
My Neurology on the Hill experience was just a taste – it was literally only a day – and I thought this is really an impactful way to spend my time. As I thought about potential advocacy issues, a particular patient immediately came to mind. Last New Year's Eve, a 17-year-old woman had awoken blind. She was five-feet tall and weighed nearly 300 pounds, and had been complaining of severe headaches, vomiting, and blurred vision for a couple of weeks.
A fundus exam revealed that the nerves of her eyes were completely swollen. We were concerned there could be raised pressure in her head, which a spinal tap confirmed. I diagnosed the patient with pseudotumor cerebri, also known as idiopathic intracranial hypertension, a condition associated with obesity. Unfortunately, the patient never regained her vision and spent most of her senior year of high school determining if she were eligible for a seeing-eye dog.
Her obesity, a contributor to the disease, was entirely preventable. In fact, this condition affects a majority of the patients in my practice, especially children. I've tried to get weight management and dietary consultative services for these children, however, insurance companies will pay for only certain conditions. It's mind boggling to me that they'll pay for gastric banding later in life, but not cover these preventable measures.
HOW DID THE PALATUCCI FORUM PREPARE YOU TO PURSUE YOUR ADVOCACY PLAN?
I had been excited to participate in the media and grassroots legislative training components of the Forum, which far exceeded my expectations. At first, the media training may seem intimidating: you're placed in front of a camera and a live audience of your co-advocates, in order to practice answering questions. However, it's an extremely friendly environment, in which you get the help of experts, enabling you to obtain those critical media skills by the end of the four-day program.
In addition, an advisor who has already gone through the program and is still actively working on their advocacy plan helps you break down your plan into a realistically manageable action plan. My advisor, Elliot A. Schulman, MD, still contacts me every few weeks to check on my progress; I find it's good to have accountability.
WHAT PROGRESS HAVE YOU MADE ON YOUR ADVOCACY PLAN?
Constantine Moschonas, MD, one of my co-advocates at the Forum, said he had a contact for me who was a national leader on obesity. A week after arriving home from the Forum, he e-mailed the name — former US Surgeon General, Dr. Richard Carmona — who agreed to a phone interview.
Dr. Carmona's secretary had allotted 15 minutes for a telephone interview that turned into 45 minutes and later a trip to meet with him in Arizona, where he offered to be my mentor throughout this process. He explained that he began exactly as I had, advocating as an everyday doctor, which led him to advocate at the highest level possible for his patients. Also during my conversations with Dr. Carmona, he gave me some concrete ways to make my goals possible at a local and regional level as well as to bring them to a state and federal level.
WHAT HAS BEEN THE MOST REWARDING PART OF THIS EXPERIENCE?
Ultimately, I find people in positions of authority or power, who care enough about this issue to be on board. And they see that you're doing this because you genuinely care about your patients – there's no billing code for “I advocated for my patients today.” I just want to stop saying it doesn't matter. It actually does matter and our voice has a great deal of credibility.
WHAT ARE THE IMPLICATIONS IF NEUROLOGISTS DON'T GET INVOLVED IN ADVOCACY?
Many people feel that Washington is broken; however, in my personal experience with meeting different aides, I find they want to help – they want to hear your input. Our lawmakers will assume the silence means that neurologic patients and the neurology specialty is just fine, and there isn't a need for additional funding or research. That would definitely be a travesty.
PALATUCCI ADVOCACY LEADERSHIP FORUM APPLICATION AND GUIDELINES
- Be AAN members in good standing, who have an interest in advocacy
- Identify neurological issues with impact potential
- Answer five narrative questions on previous advocacy and leadership experience and what they hope to gain from the training
All participant expenses will be covered by the AAN, and travel arrangements must be made through the AAN
The deadline for the application for the 2011 Palatucci Forum is Sept. 19. The 2011 Forum will take place Jan. 13-16, 2011, at the Rancho Bernado Inn in San Diego, CA. For more information, visit www.aan.com/advocacy/palf.