Perspectives on Patient Advocacy and National Solutions
Neurosurgeon Christopher J. Winfree, MD, approaches any obstacle he encounters in life or in his surgical practice the same way. “I know what I want to achieve, and I systematically take steps to make it happen,” says Dr. Winfree, Director of the Peripheral Nerve Center at NewYork-Presbyterian/Columbia University Irving Medical Center, who is applying that same determined attitude in his efforts to help address the national opioid crisis.
Dr. Christopher J. Winfree
According to the Centers for Disease Control and Prevention, the growing crisis of opioid misuse, addiction, and overdose has had a devastating impact on communities across the United States. Between 1999 and 2016, more than 350,000 people died from an opioid-related overdose, with overdose deaths growing to more than 42,000 in 2016 alone. To address this problem, the Healthcare Leadership Council, a coalition of chief executives from all disciplines within American health care, invited leadership from the public and private sectors, including health care, academia, government, and the addiction and recovery arenas, to participate in the National Dialogue for Healthcare Innovation’s Opioid Crisis Solutions Summit in May 2018 in Washington, D.C. Dr. Winfree, representing the American Association of Neurological Surgeons and the Congress of Neurological Surgeons, took part in offering substantive actions that will reduce the toll of opioid addiction, while taking significant steps to improve patient care.
“The purpose of the Summit was to establish agenda items for what our priorities are in not only helping to solve the opioid crisis, but also to advocate on behalf of our patients,” says Dr. Winfree, joining representatives from some 60 organizations. “We came together to speak in a unified voice that will help to shape legislation. There is a huge drive to limit opioid prescribing, which we do support, but there also must be carve-out policies, for example, for patients with cancer pain, those in palliative care, or who have just had surgery. In neurosurgery, we want to make sure that our patients are able to get the opioid medications that they need. You can’t have a three- to seven-day opioid prescription limit on someone who just had spine or trauma surgery. These are the types of issues that the legislators know little about, so it’s up to us to make sure that these vulnerable patient populations are protected.”
Dr. Winfree, who specializes in the surgical management of peripheral nerve disorders and chronic pain, stresses the importance of ensuring that non-opioid surgical alternatives are specifically being considered in the formulation of new legislation. “Many of the opioid-sparing therapies that we as neurosurgeons provide, such as spinal cord stimulation and ablative surgery, are not routinely approved by insurance companies,” he says. “There is a barrier with government and private payers for patients getting access to these evidence-based therapies.”
The Summit also focused on the implementation of a nationwide prescription drug-monitoring program (PDMP). “Currently, there are individual, statewide PDMPs,” says Dr. Winfree. “Whenever you provide an opioid prescription, you have to check a database to make sure that the patient hasn’t already obtained one from another prescriber in your state. The problem with that, for example, is if you live in New York City, you can be in New Jersey in five minutes and the systems are not linked. We’re advocating for a nationwide PDMP that will link together all of the statewide systems.”
Following the Summit, the participants created a Roadmap for Action white paper, summarizing their recommendations for the Senate Health Committee, which is formulating the proposed legislation. It also emphasizes improving patient access to opioid-sparing therapies that include complementary and alternative medicine approaches, physiotherapy, surgical therapies, and non-narcotic pharmacologic strategies.
The Patient Perspective
Mary Hagan, who was diagnosed with schwannomatosis by Dr. Winfree 12 years ago, lives with excruciating pain from multiple schwannomas — nerve sheath tumors — that continually develop throughout her body. She was initially told by physicians in her home state of North Carolina that a varicosity in her leg likely related to a pregnancy was causing what she describes as “mind numbing pain.” When treatment failed to help her, she eventually found her way to Columbia neurologist Stanley Fahn, MD, who referred her to Dr. Winfree.
“That day in 2006 changed my life,” recalls Ms. Hagan. “Dr. Winfree pulled out the MRIs and said, ‘That’s a tumor.’ During that trip to New York, Dr. Winfree removed eight schwannomas.”
“Mary’s father is a carrier of a gene for neurofibromatosis 3, but he does not have the disease,” adds Ms. Hagan’s husband, David. “In Mary’s case, the condition began to present itself very dramatically during pregnancy, but at that time no one could provide a specific diagnosis. It was a few years before we came to Columbia, where the doctors knew immediately that these were nerve tumors.”
Ms. Hagan estimates that over the years, Dr. Winfree has microsurgically excised 46 schwannomas, some in difficult-to-reach locations. Once the tumors are removed, she feels prompt pain relief, but as new ones develop, the pain returns. As a recovering alcoholic, she relies on Dr. Winfree’s pain management approaches that avoid the use of narcotics, including a spinal cord stimulator and baclofen.
Ms. Hagan’s admiration and gratitude for Dr. Winfree’s ongoing care are clearly evident. “To say that he is august only speaks to a part of his medical talents,” she says. “He is also intuitively creative when it comes to a wall or a ‘no.’ I have no idea how many lives he has repaired and/or saved from certain despair, but I am sure it is very many. When I look at some of my scars, I am reminded of how much pain I was in and how much better my life is because of him.”