Every CFS patient with federally sponsored health insurance has experienced firsthand that it is very poor coverage for anything but the most mainstream care. However, now all of a sudden, some expect the WPI to provide boutique care for what Medicaid will pay. And cure everybody of an incurable disease. On the first visit.
Let’s see what mainstream medicine has to offer. Here are the Mayo Clinic guidelines for CFS: link. That’s what Medicare will pay for, and they say right there that they think IVIG and antivirals don’t work, so that finishes the discussion of expensive treatments. There were comments yesterday that there are a few CFS doctors that accept Medicare. If that’s true, then what’s the problem? My mail indicates that the best known CFS/Lyme doctors do not accept Medicare, let alone Medicaid, or they have other ways of generating income. But if they do take it, then there’s less of a problem if we can’t. And we can’t for now – not won’t or don’t want to.
It is impossible to budget without knowing in advance the percentage of federally insured patients that will want to be seen, but it is likely to be high. Medicare will pay if you need a million dollars worth of ICU care, but they won’t pay a few hundred dollars for you to be seen by a doctor that has the time to listen and think about a complex history. I have no interest in discussing the state of the health care system. We all know up close and personal how bad it’s gotten. It would be better if doctors worked for love instead of money like Mother Theresa, but apparently there aren’t many that do, or the clinic would already be up and running.
I’m certainly not going to touch whether doctors are worth what they expect to be paid or not. I do think everybody needs to remember that whatever a doctor’s fees, he or she doesn’t take it all home. There are many expenses involved in running a medical practice, including but not limited to malpractice and other insurance, rent or maintenance on the space, salaries, supplies, accounting and legal fees.
As for whether the WPI should have a clinic that treats a volume of patients, or just be doing a few clinical trials, that decision has already been made. Annette Whittemore’s vision of translational medicine included treating patients from the beginning. Bench to bedside to bench. The clinic exists. It is a very large space, capable of seeing a large volume of patients. There are many patients asking to be seen. In an amazing display of synchronicity, all of my professional and many personal experiences are a piece of what’s needed to organize it. Although there are many ways in which I am the right man for the job, I’m also sick and that is far from ideal, but no CFS/neuro-immune disease knowledgeable doctors have stepped up to the plate. So it seems to be my fate. I appreciate all the support from the community that I am receiving. I will do my best not to disappoint.
What are we going to offer that’s different? Medical decision making will be influenced by continuous interaction with the research lab and physicians around the world. We’re going to keep track of a large number of patients, so there is an opportunity to contribute to the greater good of the community. We are going to have doctors who are not wedded to their particular black box protocol and who are willing to consider all therapeutic options for each individual they care for, whichever neuro-immune disease cohort you fall into. We can’t offer a magic bullet that doesn’t exist, but we will be looking for one, and if we find it, you won’t have to come to Reno to hear about it. We’re going to offer quality care; that’s not unique, but there’s precious little of it to go around. We’re going to treat some patients for free as soon as we can. That unfortunately is pretty much unheard of.
There will be no solicitation of any kind. There will be no products pushed or sold. Nobody who has any questions about our motives need come. This is a unique endeavor. No one has helped us before, so we are going to help ourselves. Of course I hope that the ME/CFS community is behind us. I have no illusions about being able to be all things to all people. The harsh realities of practicing medicine preclude that, but we will do our best to serve our patients and the larger community as well.