Action Alert – Huge Insurance Broker Stops Paying for Autonomic Nervous System Tests
You probably have not undergone most forms of autonomic nervous system (ANS) testing at your doctors – yet, but there’s a good chance it’s in your
Wellpoint (think Blue Cross) suddenly says no to paying for almost all autonomic nervous system tests
future. With the ANS problems showing up in study after study, and small fiber neuropathy making the news in fibromyalgia and ME/CFS, there’s a darn good chance your doctor is going to want to really check out your ANS at some point.
That includes doing things like the QSART (Quantitative Sudomotor Axon Reflex Test), Valsalva testing, Thermoregulatory Sweat Testing (TST), Sympathetic Skin Response (SSR), siliastic skin imprint, cold pressor hand grip, and others.
The huge Insurance Wellpoint just informed the public they’re not paying for any of it anymore (except tilt table testing).
How ironic this happens just as the ANS really starts heating up in ME/CFS/FM.
It gets worse Autonomic nervous system specialists are already a) overbooked and b) hard to find. Dr. Peter Rowe, for instance, is so slammed with patients, he could easily add another practitioner or two or three, but his hospital isn’t interested. The ANS is just not a big enough money-maker.
Dysautonomia International is rallying the fight to stop Wellpoint. They called Wellpoints decision “devastating news for patients diagnosed with various forms of dysautonomia. These patients may need follow up testing to see if their autonomic dysfunction has progressively worsened, stabilized, or improved. This is disastrous for those who have yet to be diagnosed. Without autonomic function testing to confirm a diagnosis, they will not be given proper treatment. Wellpoints policy could force the few autonomic labs available to close their doors.”
From Dysautonomia International’s blog
As of October 2013, WellPoint, one of the largest insurance companies in the United States, is no longer covering autonomic function testing. WellPoint controls many Blue Cross Blue Shield companies, insuring over 36 Million Americans.
As a patient community we must stand together to fight this! If WellPoint gets away with this new policy, other insurance companies will follow. Aetna is already considering similar changes. We must stop this before it spreads to all insurers!
How You Can Help:
- E-mail WellPoint and tell them this is unacceptable. Here’s a sample e-mail. Send it to these guys:WellPoint CEO, Joseph Swedish – joseph.swedish@wellpoint.com, WellPoint Chief Medical Director, Dr. Samuel Nussbaum – samuel.nussbaum@wellpoint.com
- If you receive an insurance denial for autonomic function testing appeal, appeal, and appeal again!
- Donate to Dysautonomia International. Support our efforts to oppose this insurance disaster. 100% of your donation helps us fight on your behalf. Dysautonomia International is an all volunteer 501(c)(3) organization. WellPoint is a multi-billion dollar company.
- Ask your friends and family to join you in sending e-mails to WellPoint.
Clinical Trials
The only way to deal with CFS is to understand it better. This can’t happen without the active participation of CFS patients. Dr. Natelson
When it rains it pours. All of a sudden clinical trials are showing up all over the place. Keeping in mind patient recruitment is often one of the most expensive parts of a study let’s see what’s going on.
The Synergy Trial
“The Synergy Trial will evaluate the safety and efficacy of a currently available medication (methylphenidate) combined with a CFS-specific dietary supplement (CFS Nutrient Formula) to treat Chronic Fatigue Syndrome (CFS).”
This trial combines a broad-spectrum micronutrient supplement containing vitamins, minerals, and other cofactors (amino acids, antioxidants, and mitochondrial cofactors) with a low-dose CNS stimulant (methylphenidate).
K-Pax pharmaceuticals believes low dose Ritalin plus nutraceuticals could provide a substantial bounce in energy for ME/.CFS patients
The researchers believe the combination of a catalyst, low-dose methylphenidate, in combination with more ‘cellular fuel’ will spark the production of energy. When they provided the combination to ME/CFS patients, “many patients reported rapid and sustained reductions in fatigue as well as improvement in concentration (brain fog) when measured by the Checklist Individual Strength questionnaire and other patient-reported outcome measurement tools.”
“The Synergy Trial seeks to confirm these preliminary findings, expand on the observations made in prior research studies, and further explore the safety and efficacy of using these products.
The Synergy Trial will enroll 120 participants at four (4) research sites throughout the United States. The duration of the study intervention is 12-weeks. Sites currently include:
- Palo Alto, California (Stanford University)
- Manhattan, NY
- Salt Lake City, UT
- Fort Lauderdale, FL
Click here to find out how to enroll.
Severely Ill ME/CFS Patients Wanted!
Dr. Natelson in New York and Dr. Lapp in Charlotte are looking for severely ill patients to take part in the multi-center CDC sponsored study..
Dr. Natelson states – Sponsored by CDC who has asked us to reach out to find severely affected, bedridden CFS patients to complete our questionnaires and undergo physical exam. CDC wants to study these patients because little is known about them due to their marked disability. Based on their location, the Center nurse practitioner would try to come to their homes. If the patient were able to come to our offices on Union Square in Manhattan, that’d be even better. Filling out the questionnaires would take several hours, but they don’t all have to be completed on the initial visit — just within a week’s time.
Dr. Lapp states – We are seeking to learn more about PWCs who are severely ill and bedfast. Such individuals are unable to consult with physicians and may not be getting adequate healthcare. Both the Centers for Disease Control and the International Association for CFS/ME and FM (IACFS/FM) are considering programs to identify and assist such patients. If you know such an individual, please email Dr. Lapp (cwlapp@drlapp.net ) with the patient’s initials (only) and city of residence. If the person is willing to be contacted, please provide a telephone number and/or email address. Thank you for your help!
Dr. Natelson’s Neutraceutical and Brain Study
This study looks at brain function and chemistry. They would love patients to do a spinal tap to collect spinal fluid (but it’s not necessary). Participants will be offered one month of treatment with a neutriceutical [N-Acety Cysteine]. Patients volunteering for this study are asked to come back to the city for repeat testing after the treatment.
Go to www.painandfatigue.com website to download, complete and then send in the HEALTH SCREEN FORM. After they have received it and reviewed it, they’ll contact you.
Dr. Sonya Marshall-Gradisnuk Wants Your Blood – To Look for a Biomarker
Griffiths University is the home of Dr. Sonya Marshall-Gradisnuk and her ME/CFS research group at the National Centre for Neuroimmunology and Emerging Diseases. (If anybody can find an immune biomarker – they can. :))
Please call (07)56789283 or email ncned@griffith.edu.au for more information and to organise an appointment.Participants blood collection site are in Gold Coast and Brisbane area:
1. Robina Hospital,
2. NCNED Center (Griffith Univeristy on Parkland Drive)
3. Logan Hospital
4. Royal Women Brisbane hospital
5. Tweed HospitalAs this study is commencing in November, please contact us directly as dates are filling up.Thank you
NCNED Team
- Check out The Next Generation of Fibromyalgia -The Clinical Trials for information on currently recruiting fibromyalgia trials.
Dr. Rowes’s Heart Rate and Blood Pressure Study
A simple two hour visit and some followup is all that’s needed in Dr. Rowe’s study at the Johns Hopkins Bayview Medical Center Study. You’ll get $100 for participating. Call Malini at (410) 550 9826 or email her Mmon2@jhmi.edu for more.
Conferences
IACFS/ME Conference Registration is…..Open…
Registration is now open for the 11th Biennial International Research and Clinical Conference to be held in San Francisco, California, USA, March 20-23, 2014. The conference is co-supported by Stanford University and will be held at the Parc 55 Wyndham Hotel.
- For more information on the conference and registration: http://www.iacfsme.org/
Conferences/2014Conference/ 2014ConferenceRegistration/ tabid/533/Default.aspx - For hotel information: http://www.iacfsme.org/
Conferences/2014Conference/ 2014Hotel/tabid/538/Default. aspx
New York ME/CFS Conference Gets Attention
‘CFSAC’ Says No to Changing or Stopping IOM Contract
It’s not clear who ‘CFSAC’ is, and I imagine some members would be mortified to find themselves even indirectly included in the IOM contract process (particularly since they weren’t consulted in the first place :)), but ‘CFSAC’ has spoken. In a statement that didn’t address several questions and probably left no one outside of themselves satisfied, CFSAC clarified a few issues, but mostly made it clear (without actually saying so) that the contract is going forward – end of discussion.
‘CFSAC’ would clearly rather the discussion end with that, but it’s not happening. Check out Jennifer Spotila’s response here. We’ll have a blog coming up soon.
New CFIDS Association Prez Says Hello
An at times emotional Carol Head talks a bit about her struggle with ME/CFS decades ago and unacceptably slow the progress at understanding and treating ME/CFS has been, and her commitment to push it forward.
She has some big shoes to fill. Few people knew ME/CFS research, policy (and fund-raising!) like Kim McCleary did. (In fact, I’ll bet there are few researchers that were better informed about ME/CFS research than Kim McCleary. Carol Head’s background is in social media and marketing.
The CFIDS Association also has a new online home at SolveCFS.org
FDA Fibromyalgia Stakeholder Meeting Coming Up Soon – Take the Survey
If you have fibromyalgia be sure to take this survey to inform the FDA of how effective the current treatments for FM are
Health Rising News
Thanks to everyone who’s supported our November $5 Recurring Donation Fundraising campaign that’s raised about $250 in new recurring donations.
The Campaign ends in nine days; if you haven’t joined yet, please help keep Health Rising afloat and moving upwards by contributing just $5 month. Check out our recurring donations tab on the right hand side of all pages. Just click Subscribe to start the process.
Thanks for all your suggestions for the early release of the Practitioner Review. We’ve made several fixes and are continuing work on it. We’ll keep you informed.
The Canary Crows….
Speaking of the ‘Canary’ in the room, this remarkable, block-buster campaign started off hoping to raise $50,00o, and ended up raising the entire $200,000 they needed to produce their film. What an incredible out-pouring of support the ME/CFS Community showed for this exciting project.
Check out Jennifer’s Brea’s tired and heartfelt thank you….
Re: Carol Head “(In fact, I’ll bet there are few researchers that were better informed about ME/CFS research than Kim McCleary. Carol Head’s background is in social media and marketing.”
Loved this article until I got to that part. Such nonsense! There are dozens of researchers who are/were better informed than Kim McLeary.
Background in “social media and marketing”? Now that’s appropriate for the CAA. Manipulation without really doing anything useful, while trying very hard to look like they are, making big buck off our suffering.
I know that sounds weird, but if you knew Kim McCleary and spoke to her about the research you might have a different take on this.She was incredibly up on the research. I know Kim’s a kind of a controversial figure, but that was my impression of her 🙂
Also, you might be surprised at how many researchers are focused on THEIR field and not others. It makes sense- each field is huge; Kim pretty much kept up with it all.
Wow, I missed the fact that Abraham Verghese is going to be the keynote speaker at the SF conference. “Cutting For Stone” is a great book. Unfortunately it isn’t going to be recorded for all who can’t be there – too costly.
That book has almost 2,000 reviews on Amazon (!)..I’d never heard of it..
“Marion and Shiva Stone are twin brothers born of a secret union between a beautiful Indian nun and a brash British surgeon. Orphaned by their mother’s death and their father’s disappearance, bound together by a preternatural connection and a shared fascination with medicine, the twins come of age as Ethiopia hovers on the brink of revolution.
Moving from Addis Ababa to New York City and back again, Cutting for Stone is an unforgettable story of love and betrayal, medicine and ordinary miracles–and two brothers whose fates are forever intertwined.”
Natelson wants to trial NAC for brain function with the possibility of CSF function? That one interests me – pity I wasn’t in the locale.
As regards Wellpoint not covering autonomic testing, its a very shortsighted development (why expect anything else) which might well cost them a heap more in the long term.
I came across the following statement from a paper called Autonomic Neuropathy is Treatable (the context is diabetic neuropathy but the principle applies to any chronic illness involving autonomic dysfunction).
The full paper is here : https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&cad=rja&ved=0CDIQFjAA&url=http%3A%2F%2Fwadepage.org%2Ffiles%2Ffile%2FREDUCING%2520RISKS%2FAutonomic%2520Neuropathy.pdf&ei=G4OPUq7MMeTF7AbopIHwBA&usg=AFQjCNEI4h2axHa0sMLBjwDhq8SfyQFyBA&sig2=MTFEzJ-IfvQQuTxVqf8JeQ&bvm=bv.56988011,d.ZGU
I copied and pasted the para in full as I think its highly relevant and Dysautonomia International might find powerful allies in the signatories (the NIH!) to this statement (para split for clarity) :
The authors further state :
Wellpoint’s decision seems to very much at odds with medical opinion and the expressed opinion of the NIH!
Great resource, Mark! I’ll pass it onto Lauren..
I just can’t imagine what they are thinking..Thanks
Cort, what a phenomenal job you have done. This one is packed full of important information for all ME/CFS and FM patients. Kuddos for the comprehensive article.
Shake it up! Celeste
Shake it up, baby!
Thanks 🙂
I have two comments on all the above:
The first is that Leonard Schaeffer, who founded WellPoint and acted as CEO until leaving it some years ago, made a gift of $2 million to the IOM (after having left WellPoint) to fund an Executive Officer there. So there is a connection between the two organizations.
The second is that Julia Newton, leader of the group at Newcastle U. doing great research on the ANS and ME/CFS, published a paper a few years ago, listed under the name of Sutcliffe K, “Home orthostatic training in chronic fatigue syndrome–a randomized, placebo-controlled feasibility study”, PMID:19912315. I have the full text of the paper, which describes a simple procedure of standing in relaxed posture with one’s shoulder blades touching a back wall and one’s heels ca.12-15cms in front of that wall. One holds the position until one develops symptoms, and one needs–this is important–a “drop zone” around one just in case one passes out, and/or a friend to intervene if necessary. This is maintained once or twice daily up to 40mins.
The results were excellent–most patients improved their Orthostatic Intolerance substantially within one month, and those who kept it up for 6 months generally reported an improvement in fatigue too. I have been doing this for about 3 months now (I am 80, so must expect slow response!) and can report that my OI has improved significantly, and my BP rise after exercise (a prime symptom) has been much reduced. Needless to say I shall continue.
But I advise caution: I have never fainted in my life, but know several with ME who have, and one has to take the warnings seriously. I also note that my legs feel heavy and rather numb for a short while after, and I have to leave the position with care as I sit down. We may not get ANS testing, but we can do something for ourselves–following the research coming from Julia Newton’s group is definitely one of those things.
Cool, Chris – thanks for reporting on that…
I’ve been meaning to do a blog on that protocol….Thanks for the reminder.
She’s doing alot of exciting stuff:)
Regarding the Wellpoint story – I’m truly disgusted with insurance companies right now as I am going through my own battle with Blue Cross.
In addition to writing to the top Wellpoint executives as stated above, anyone that has commercial insurance themselves or as a dependent make sure to also make your opinions heard in your HR department at work. They need to understand what the employees want in their healthcare plans – and if they can get enough signatures at work to boycott Blue Cross, HR would have to listen to that.
Hey Cort, I figured this might be a better way to reach out to you. I commented on your post titled “DYSAUTONOMIA 101 FROM LAUREN STILES FOR CHRONIC FATIGUE SYNDROME AND FIBROMYALGIA” last month saying that I had not previously heard of Dysautonomia Awareness Month. Well, you sent me a great email saying that there might be a chance that I could write a blog post on it myself. I thought this was very intriguing and emailed you back about a week later. I wasn’t sure if this email got filed away under some other folder, but I would certainly be interested in pursuing this opportunity.
Figured I’d let you know here on your blog as well!