Allele
Senior Member (Voting Rights)
Me too. I sniggeredLeapt out at the internal 8 year old part of my brain I'm afraid.
Me too. I sniggeredLeapt out at the internal 8 year old part of my brain I'm afraid.
Very cleverI decided to try a different strategy with Kaiser Permanente, to see if it got better results. Rather than trying to get them NOT to do something (stop GET), why not try to get them TO DO something instead?
I view this somewhat differently.
Dr. Komaroff was writing an editorial called "Is ME/CFS Real?" in an issue of The Annals of Internal Medicine in which there were two separate review articles on ME/CFS: one on diagnosis and the other on treatment.
So, he mentions the findings of the treatment review, but then goes out of his way to highlight the shortcomings of those findings - something you might not pick up by reading the treatment article itself, because it's down in the weeds. This would be especially true if you just read the conclusions in the abstract of treatment review article:
What's also kind of odd is that, although the AHRQ apparently commissioned the Pacific Northwest Evidence-based Practice Center, et al. to review the data, the review states:
So, I view this as Komaroff undercutting the treatment analysis made by Oregon's Northwest Evidence-based Practice Center, et al. (not the AHRQ) without coming flat out and saying it's wrong and/or underplays the risks.
Leapt out at the internal 8 year old part of my brain I'm afraid.
Not everyone gets into the weeds.
Insurance companies are masters of wearing you down till you quit, or in this case probably trying to steer you away from forcing their hand.Got a call back from Kaiser Member Services today.
Unlike the last person I spoke with, this representative only wanted to hear about my medical needs. Not the systemic issue of lack of ME/CFS patient care.
So, now I'm working on the much narrower goal of getting an outside specialist referral.
But if I can succeed in this, it will be a step forward. I've never heard of Kaiser Permanente agreeing to an outside referral for an ME/CFS patient. It was impossible when I tried 3 years ago (had to pay out of pocket to visit Open Medicine Institute).
California Department of Managed Healthcare said:"At this time, it appears that Kaiser Permanente was in compliance with its obligations under the terms of your health plan contract, also known as your Evidence of Coverage, and California health plan law with regard to the issues raised in your complaint."
a class action?Who in the bureaucracy has the power to change California Health Plan Law? .
Thanks.What a blow, @Webdog, and you have tried so hard to get them to see sense. I hope you can find a good primary care doctor who doesn't recommend exercise.
But a specialist can do further testing to rule out other rare diseases (including genetic testing) and would be able to trial off label treatments that some patients have found helpful that your PCP knows nothing about (points you can appeal with).My request for ME/CFS specialist care from Kaiser Permanente was denied.
I had argued that my doctors, while competent, know absolutely nothing about ME/CFS. Also, that any other severely ill patient would be able to see a doctor experienced in their disease and familiar with current medical research.
Multiple Sclerosis patients can see a doctor with MS experience. Diabetes patients can see a doctor with diabetes experience. Parkinson's patients can see a doctor with Parkinson's experience. Epilepsy patients can see a doctor with epilepsy experience.
However, if you are a patient with ME/CFS, you are not permitted to see a doctor with ME/CFS experience. Some might consider this discrimination.
Kaiser Permanente says my primary care doctor is able to provide the recommended ME/CFS treatments:
and that that fulfills their obligation under the plan.
- Exercise
- Supportive Therapy
- Antidepressants
I do not feel legal action is the right approach. Besides, the California Department of Managed Healthcare already ruled that Kaiser Permanente has followed their plan obligations. There is no law against recommending GET+CBT+antidepressants for ME/CFS. There is no legal requirement that a healthcare plan provide specialist care for ME/CFS.But a specialist can do further testing to rule out other rare diseases (including genetic testing) and would be able to trial off label treatments that some patients have found helpful that your PCP knows nothing about (points you can appeal with).
Also a specialist would know about the current research into ME/CFS that demonstrates that the therapies they recommended have poor efficacy which evidently Kaiser does not know. Using these harmful treatments could make your condition worse increasing their costs.
Have you considered getting legal assistance, not sure how to pay for it unless there is legal aid in your state but it might be worth looking into, since Kaiser just wants to wear you down till you go away.
Fair enoughI do not feel legal action is the right approach. Besides, the California Department of Managed Healthcare already ruled that Kaiser Permanente has followed their plan obligations. There is no law against recommending GET+CBT+antidepressants for ME/CFS.
Indeed, though your goal seems to be to convince them to do better.There is no legal requirement that a healthcare plan provide specialist care for ME/CFS.
Its not quite this simple, a provider is in the business of providing care, if they provide bad care they are of course not helping patients. The reason for providing sub optimal care varies in disease to disease but in our case its because of shysters promoting fraudulent treatments and lack of proven alternatives.Yet that is more a medicine problem than a Kaiser Permanente problem
No unfortunately they won't. If liars with credibility tell them to this is the standard of care they will keep it, it not working won't sway them because they follow what the "experts" tell them plus relying on alternative facts that show it work is more then enough to keep it this way.In the end, Kaiser Permanente and every other HMO will drop GET/CBT/antidepressants for ME/CFS simply because these treatments don't work. Patients don't get better and it makes no sense medically or financially to continue pushing ineffective treatments. It might take a few years, but that is the inevitable outcome.
My request for ME/CFS specialist care from Kaiser Permanente was denied.
Kaiser Permanente says my primary care doctor is able to provide the recommended ME/CFS treatments:
and that that fulfills their obligation under the plan.
- Exercise
- Supportive Therapy
- Antidepressants