I’ve accepted the position of Director of Clinical Services for the WPI, or the Center for Neuro-Immune Disease as the clinic will be called. I am currently recruiting in earnest. Physicians, nurses, PAs, practice manager. We are planning to open in May, but that is of course completely dependent upon finding the right doctors. A few good men or women. If you are out there reading this, please get in touch. It’s a phenomenal opportunity to be part of something unique from inception. The space is amazing and Judy’s lab is down the hall. I’m still too sick to rely upon this body to see patients scheduled a long way in advance, but I have a background in Emergency Department administration, physician recruiting and management. And I know the enemy intimately. In fact, all of my experience, as a doctor, a patient and the mother of a patient, seems a part.
I see it as a primary care emergency. There are already a huge number of patients on an interest list, even though a trip to Reno is a daunting proposition for most. My mail is full of tales of unbelievable neglect by the medical profession and the care that has been rendered has often been more harmful than helpful in hindsight. Most are lacking a local physician with even a basic understanding of their illness. Whatever care they have had has been idiosyncratic, hit or miss. Whole families need to be hooked in to appropriate care. CFS parents with autistic kids. There’s never been a systematic approach to either illness.
Since many patients will be traveling to be seen, and many have never had a chance to tell their story to a doctor who wasn’t trying to escape from the room, first visits will be two hours, revisits an hour. For those needing long distance follow-up by Skype or phone, it will be available with your physician or physician extender. Continuity of provider will be a goal, but there will be continuity of care that will allow transitioning easily to a new doctor if there is no chemistry or if there is staff turnover. We are forming a Physician Working Group to help us think about a decision tree. Consensus is too much to expect, but I’m sure we will learn a lot and it will shape the thinking of our doctors. Patients should be able to expect a uniformity of approach, but not a cookie cutter protocol.
I’ve looked hard at accepting insurance and unfortunately have concluded that it isn’t possible to offer quality care to this group of patients at current reimbursement rates. Medicare/Medicaid simply won’t pay the bills. Private insurance generally doesn’t cover out of state care anyway and patients are going to come from overseas. Any way we structure it will be unfair to somebody. Whatever fair physician fee we will need to charge, the travel costs will be the biggest chunk anyway. I have read rumors on the internet that range from the WPI is going to see patients for free to it’s going to cost some crazy amount. It looks like it will have to be a cash practice, hourly fee to be set, but I can say for sure it will be at the lower end of the CFS/Lyme/alternative doctor fee scale. We will provide a superbill and documentation to support a claim. Fully operational, the clinic should generate income that will be donated back to the WPI and the research, percentage of gross to be announced at year end. We intend to have a fund for patients who otherwise cannot access care as soon as we are in the black.
When I started this blog, it was pretty much of a personal rant from the perspective of a disabled doctor. I have a bigger responsibility now, but I want to continue to share my experience openly. One of the many unusual things about the people running the show at the WPI is the clarity of their intention to help. A major intention of mine is to end any feelings that there is something worth knowing that is secret. Secrecy in the face of a public health emergency is a travesty. Anything but collaboration to ameliorate the unbelievable suffering is intolerable. Going forward, what we learn will be incorporated into the thinking of mainstream physicians everywhere so that care will be available locally. At this point the treatment options worth considering are limited. With a large patient volume and a group of physicians sharing with each other and with the scientific team, it should be possible to look at these options systematically.
Down the road, I’d like to be able to offer comprehensive care, including an extended stay to begin rehab, though it’s just a twinkle in my eye at this point. We will offer the opportunity to be seen on more than one day during a trip. We’ve traveled for care to be seen for an hour and it’s a miserable experience. There’s a wonderful opportunity in Reno for someone to take on a Ronald McDonald type house, if you are out there reading this.
We are in the special position of being a startup, so we’re going paperless. I’m looking at Electronic Medical Record systems now. We will be able to search charts horizontally, by medication or other intervention, symptom, particular abnormal lab result, pretty much anything we want. Many who write want to help in some way and there will be collective value in contributing to our database. The doctors on the frontline will be sharing with the best and most experienced clinicians and scientific minds from around the world; they will know what the current options are and how to think about them for a given individual. My vision is to create what I needed fifteen years ago when I first became ill, and again seven years ago when it happened to Ali and my husband. We were never even diagnosed properly due to the incredible ignorance surrounding this disease. We are going to change all that.
Leaving for Reno again on Monday night. I’ll do the wheelchair thing and use oxygen in the plane this time. Pace myself while I’m there. Grumble. Grumble.