I think Dr. Deckoff-Jones has gotten this off to a great start. I love the honest talk and transparency. Here's my take from the XMRV Buzz page
WPI Clinic Revealed - Dr. Deckoff-Jones, in her latest series blog, has been laying out how the Clinic is going to function..First the opening date for the WPI is looking like May - just four months from now. God bless her, she's making the money side of the Clinic very clear. When was the last time any clinic spelled out why it was doing regarding money and treatment? She's clearly very well versed in the how-to's of clinic management.
First there's the Medicare issue. The WPI just cannot afford to accept Medicare. (My experience is that very few CFS doctors accept insurance let alone Medicare). Medicare is apparently great for covering big operations and 20 minute visits but it sucks at covering 1 1/2 visits and complicated diseases. She said " Also accepting Medicare/Medicaid is an all or nothing proposition. You have to play completely by their rules or opt out all together. They don't allow a middle ground. The government thinks a 20 minute visit is adequate, particularly since there is no treatment."
No insurance - no insurance either and personally I would have been surprised if they had. The last ME/CFS doctor I saw that took insurance was about 20 years ago...it just doesn't seem to be done anymore. The Clinic simply doesn't have any money to burn through while they wait for insurance payments to kick in - it must start paying for itself immediately - or it won't open - it's as simple as that.
Some Pro-bono Treatments - she did note that they will be providing pro bono treatments to a percentage of patients...(Some of our wealthier doctors could take a hint)..and they will determine the percentage as the clinic opens and as they figure out where they are financially. One has the feeling that Annette's fingerprints are all over this.....it's about helping as many people as possible given the monetary restraints of operating a medical clinic.
Dr. Deckoff-Jones has been through the money grind at expensive, profit oriented clinics and stated I am determined not to do that to others. I hereby promise that nobody is going to get rich on the budget I'm putting together. Salaries will be fair, but we are looking for people for whom it is more than a job. The purpose of the clinic is to treat individual patients, but because of the translational medical approach that will be engendered by existing in concert with the research lab, there is a bigger purpose as well... This was "I hereby promise that nobody is going to get rich on the budget I'm putting together." was music to my ears. There certainly are many ME/CFS physicians who could be doing much better working outside of CFS - the work is a labor of love for them as well and Dr. Bateman, who lost her sister to CFS, springs immediately to mind.
The Clinic itself sounds very impressive. Alot of people will want to be seen - and it's built to see alot of people. "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."
The Director! - Dr. Deckoff-Jones will be the "Director of Clinical Services for the WPI" (actually called the Center for Neuro-immune Disease" and is recruiting Physicians, nurses, PA's and a practice manager.
What shines through in the blogs Dr. Deckoff-Jones posted is a commitment to communication and transparency. The WPI clinic will not be a miracle worker necessarily; what it will be able to do is systematically and methodically analyse the different treatments available and integrate them with cutting edge research. Nobody is doing anything but suggesting that there isn't a long way to go but the WPI's blend of integrated research/treatment should help move the field much faster. Would that there were more Centers out there. There's alot more in her blogs. Check them out here.
Glad Annette Whittemore's vision of Translational Medicine...bench to bedside to bench is in your piece.
TM is NIH Director Collins' biggest initiative this year, he plans to create an entire Institute for it and have it up and running by yearend. Perhaps we should support his TM effort and encourage him to support WPI's, financially that is, with federal grants?
"A Government Niche for Translational Medicine and Drug Development," Science 10 Dec 2010 describes Collins' plan and the Clinical and Translational Science Awards that support clinical research.
Its not true that "most CFS docs" don't take insurance or medicare. Many of the well known (mainstream) ones do. Some of them also run regular clinics, which might offset some of the costs associated with providing extended patient visit/evaluations for their CFS patients. But just from personal experience, I have seen two of the best know CFS docs in the country (Peterson, Lerner) and they both took at least some insurance policies and medicare.
It sounds like the WPI has their reasons for not doing this, and time will tell if this decision will work out for them. Maybe this will give them freedom to do some things that the other docs haven't been able to do. I am optimistic and hope they can make more progress, because we sorely need it. But just because they chose to do it that way, doesn't mean the same is true of the other "CFS docs".
So any news on a "waiting list" to be seen at the clinic? Will they be taking patients first that have been referred from other ME/CFS docs? Patients who already have positive XMRV results? It would be helpful to know if a patient shoud have certain tests beforehand, or if comprehensive testing for all sorts of things including XMRV/MVL's can be done right at the clinic.
everybody who is sick and financially depleted has to come up with the money to try to get well again, while the CDC's indifference and neglect is the root cause of the real problem. it really is true that "life isn't fair".
good luck to everyone who is impoverished from this fiasco; we will be fortunate not to die before we can afford the care (not an exaggeration).
i know the WPI is going to help as much as possible, but there is no way they can treat all who are unable to afford the cost. And yes, the CDC should pay the bills/and hell will freeze over first.
best wishes to all of us in surviving this god-forsaken human disaster.
I don't think it's accurate to divide patients that way.
I have my name down with the WPI for treatment and have done since early last year.
I'm in my fifties and have a badly paid part time job but a small mortgage. I made it a priority to clear as much of it as possible over the years when my children were growing so that when I reached this age I could have some security if I lost my job or had some other catastrophe. I also didn't trust the government as I had seen a few economic meltdowns in my time.
The best laid plans etc.. I now struggle to work at all and spend my time not working in bed.
I will go to my bank and raise money on my house to fund initial treatment at WPI, as I think if I continue to decline as I am I stand to lose much more. Yes I am 'lucky' to have that choice, but I'm paying a price for my governments criminal bad management of the economy and total neglect of this illness.
I think that any success WPI have in treating myself and others will filter out very quickly to the wider community, at least that is my hope for us all.
WPI has stated clearly that the cash flow from the patients will in part go to the research arm. How that's done if they're legally separate, I don't know. I assume they have figured out all the paper loopholes. I assume that's why insurance doesn't work as a model--they can't just generate income to cover treatment, they need to fund research (or feel they need to).
Personally it puts me off, that unable to get grants, they are asking patients to pony up. If translational medicine means, Patients pay top dollar out of pocket...well...
But at least they should be clear about exactly what the research projects are, what the "N" will be (if possible, ie how many are being studied), project their costs, and what percentage of patients' money will fund each study. If that's not transparent, it doesn't seem right to me.
At this point, since ARVs have been underwhelming, and since any other treatments are available from other docs who do take insurance, people who go there are probably above all donating their cash and bodies to the future, in the hopes that WPI will come up with something new or different.
As I said, I am just curious. And my post was not meant as criticism of WPI or other medical practices that specialize in treating ME/CFS patients. Nor am I passing judgment on people who take advantage of whatever medical care they can get.
The WPI is doing exciting work, but there are many other docs and clinics out there, most of them are not 'name' docs. But even Klimas' clinic in Florida takes some types of insurance, plus she has a better track record than even Cheney -- actual recovered and recovering patients. Rare yes, but true.