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Why you should register for the NIH's ME/CFS P2P - Jennie Spotila

catly

Senior Member
Messages
284
Location
outside of NYC
One of the biggest reasons to voice your concern over the P2P initiative is stated on the first page of the draft AHRQ document, it states that "The final report (not draft) may be used, in whole or in part, as a basis for the development of clinical practice guidelines and other quality enhancement tools, or as a basis for reimbursement and coverage policies." For more on the draft AHRQ report please see this thread.

So what does this mean? Well as someone who has worked in healthcare and the insurance industry for 25 years, it means that if you think health care coverage for ME in the US is bad now, get ready for it to become much worse as the insurance companies and Medicare/Medicaid get hold of this and refuse to cover anything other than CBT/GET. And I'm sure this will spill over into the disability insurance industry as well.

So whether or not you decide "participating" in the upcoming P2P meeting is the right thing to do, I want to second @caledonia information above...please speak up, either way! And consider joining in on the twitterstorms that many PWME have been doing on Saturdays at 7 pm. or anytime you feel like it.

Twitter is an easy way to particpate in advocacy. It is easy to create a twitter account and to compose tweets.

The existing twitterstorms are targeting the following individuals:

NIH director Francis S. Collins @NIHDirector

Director of NIH Office of Women's health Janine Clayton @JanineClaytonMD
HHS Secretary of Health Sylvia Burwell @SecBurwell

You can also tweet your congressman and anyone else you think is important.

Use the hastag #StopP2P4ME if you decide to join so the hastag can be trended. I think we can actually recover all the tweets to that hastag, so theoretically, we can produce a record of all of those tweets.
 

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
it's probably easiest if you use storify, or something like that, if you want to produce a record. Tweets become difficult to search after time has elapsed.
 

user9876

Senior Member
Messages
4,556
So what does this mean? Well as someone who has worked in healthcare and the insurance industry for 25 years, it means that if you think health care coverage for ME in the US is bad now, get ready for it to become much worse as the insurance companies and Medicare/Medicaid get hold of this and refuse to cover anything other than CBT/GET. And I'm sure this will spill over into the disability insurance industry as well.

In general insurance companies have a business model which is based on having a good understanding of risks and costs associated with the risks and then charging an appropriate premium. Its not really in there interest to get either wrong as this leads to unexpected liabilities. That is what happened with the costs associated with asbestos which had serious consequences for the insurance industry (at least Lloyds in the UK). Maybe my view is too idealized from speaking to economists studying risk and insurance models!

In the past people like White and Wessely have been accused of acting on behalf of the insurance companies in reducing claims. However, I tend to a different opinion that they just believe very strongly in their views (despite the evidence) and that they are pushing their attitudes to the insurance companies and are actually storing up potential long term liabilities for the insurance industry because their work leads to underestimating costs associated with ME. Of course the insurance industry will then try to avoid the unexpected claims. I do wonder what kind of liabilities QMUL and Barts have given the way they have spun their research results and seemed to have briefed some insurance companies.

Hence I think it is important to try to convey a message that the CBT and GET research is extremely dodgy in methodology and outcome reporting. Also its important to convey that there are ways in to understanding mechanism including things like the association between b-cells etc and hence suggest that there will be breakthroughs over the the next few years. This is in part to signal to the insurance industry (and specifically the actuaries) that they need to build this into their cost models.

Thus I think it is important to respond to the P2P document.