My name is Mike Gaffney. I am a retired forester from Olympia, Washington, and I have spent much of life enjoying my time outdoors. But in late February of 2011, my life was turned upside down. After suffering from numbness in my feet, I was diagnosed with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). This disease is often described a slower onset but chronic form of Guillain–Barré Syndrome (GBS), where one’s nerves are attacked by one’s own body. It starts with the extremities and works toward the body core. You slowly lose control and function, and you often deal with neuropathic pain which is difficult to relieve. In GBS, the patient often ends up hospitalized and on a ventilator before treatments can begin to do their work.
For 18 months they treated me for CIDP. They began with a loading phase, requiring five consecutive days of six hour infusions of a specialized blood plasma. Following that phase, I received additional infusions for six hours every three to four weeks. The loading phase totaled a whopping $85,000 as an outpatient. On top of that, each follow-up dose was another $10,000. In the end, it was a total of over $175,000. This lasted 18 months until my lack of response to the infusions and a closer study of my broad range of symptoms led my doctors to suspect I actually had POEMS Syndrome, a rare variant of Multiple Myeloma — a disease with its own expensive medications. Had I not had excellent private insurance during my treatment for CIDP, the costs would have had a devastating effect to my family’s finances that likely would have resulted in a decline in my health.
I am quite fortunate to have Medicare coverage and excellent supplemental insurance. However, if my coverage were to change, the treatment costs would quickly rise beyond our ability to pay, and I would likely die. So that possibility hangs in the background, 24/7.
It is deeply frustrating to me that Medicare does not have the ability to negotiate, meaning that we pay 80% more than other wealthy countries like ours. That is why I am supportive of the Trump Administration’s plan to lower Medicare Part B drug prices for drugs like the infusion I received for a year and a half. The plan will allow us to negotiate better on the price of drugs and will effectively bring our costs down by over 50 percent. That would make a difference for my peace of mind and the health of many Americans like me.