First Medicare Reimbursement Approved for FUS for Parkinson’s Disease

[MBAnderson]

fusfoundation.org/news/firs...

[rebtar]

Fantastic news!!!!!

[reedboat2]

And more to come

[Grumpy77]

Great news!

For those of us in the UK, I've been wondering if the NHS can fund FUS Switzerland for individuals

I hope they do but given how expensive it is and that it is outside the UK, I doubt they do... does anyone know for sure?

[gingerj in reply to Grumpy77]

My neurologist told me that it's dbs only in the UK and I'd have to pay private for the swiss PTT fus procedure. She has referred me to the DBs movement specialist with whom I was hoping to discuss this further but I think I'll be waiting too long and I want to get on with fus asap

[Grumpy77 in reply to gingerj]

Hello gingerj

Have you been approved for the procedure?

Do you respond c/l or other PD meds?

How much in total is the procedure costing-including initial assessments , preliminary visits up to actual procedure?

Thank you

[gingerj in reply to Grumpy77]

I have made first contact with sonimodul. They said that from my description of my current condition that I am suitable. I am now arranging a consultation with them asap. I understand the cost to be 1500 swiss francs for this. And the overall cost of the procedure to be 35000 plus travel and hotel. This is for one side. But I've read that the other side benefits too. They have asked if I can provide any MRI and dat scans plus notes from my neurologist. I'm making enquiries with my GP. This will take time. I've been taking sinemet for just over a year and though it does help with everything, after just six months it causes strong and painful end of dose dystonia which is more disabling than the PD. I'm currently taking up to 5 * 100mg a day

[MBAnderson in reply to gingerj]

If they decline or are reluctant to providing you the medical records, you probably know that the patient is the owner of those records and they have to provide them.

[gingerj in reply to MBAnderson]

Thanks. I hope they will be easy about it. It just takes so long to get an appointment.

[WinnieThePoo in reply to Grumpy77]

The NHS will not pay for an unapproved treatment at a private clinic . I would be surprised if FUS treatments were not developed and approved in the UK eventually (quite soon?) at which point they would be funded by the NHS if clinically approved. Imperial college have been trialling MRgFUS for both essential tremor and PD. This is similar to the treatment recently approved by the FDA, and not the unique Swiss version. It is therefore likely that this will be an NHS approved procedure in the (hopefully not too distant) future

[Grumpy77 in reply to WinnieThePoo]

I think they adapt the Swiss FUS, everyone says the treatment there goes deeper towards alleviating PD symptoms

[sharoncrayn]

MBA:

What's with your title?

"*Not all Parkinson's disease is considered tremor-dominant, so we encourage all Parkinson’s disease patients to consult their physician to determine if their disease can be considered tremor-dominant. "

"for patients undergoing unilateral focused ultrasound thalamotomy for tremor-dominant Parkinson’s disease."

Tremor related to one (1) MAC at this time? Somewhat confusing blurb. How did they cover non-tremor dominant PD before this announcement? Since when? To what extent?

Sharon

[MBAnderson in reply to sharoncrayn]

"What's with your title?" I don't understand.

[camper1]

I went to a neurosurgeon in Boston, ma re: this treatment, I have tremor that is helped with medication but medicine is wearing off sooner and adding more meds is causing dyskinesia. Due to the fact the tremor is controlled with medicine, I am not eligible for this treatment.

[MBAnderson in reply to camper1]

Camper, I think the neurosurgeon got wrong. I think it is for people whose meds are wearing off causing them to increase the dose inducing dyskinesia.

[sharoncrayn in reply to MBAnderson]

MBA:

Regardless of your personal opinion, I found the blurb confusing. Perhaps you can follow up with a personal contact to the MAC that is the lone approval MAC or Medicare itself.

I assume it is strictly for a "unilateral" FUS.

Sharon

[MBAnderson in reply to sharoncrayn]

Sharon,

I don't think I offered a personal opinion on this thread, unless you mean my reply to camper?? My reply to camper is my understanding of the criteria.

It was confusing. Far as I know, only unilateral is approved in the US. Someone else who uses Medicare can follow up with the MAC. I get my healthcare from the VA and I am already too jammed up before we leave will next Thursday for Solothurn.

[camper1 in reply to MBAnderson]

i believe that’s the study that they are doing now, when I was at his office he said I would qualify for that study because of the dyskinesia but the research department said study had already closed. They called a few days ago that it had reopened but I’m afraid I would go through all that and get placebo. I’m leaning towards Switzerland at some point.

[MBAnderson in reply to camper1]

Camper,

Perhaps you know that I volunteered for the pallidotomy clinical trial and did get randomized to the sham procedure. Not only did I spend four hours immobilized in an MR machine for nothing, but I spent $6000 traveling back and forth between St. Paul, Minnesota and Columbus, Ohio. My contribution to science. You're welcome.

The odds of getting randomized to the sham trial are 33%. The cost-benefit analysis comes out heavy in favor of taking the chance. The cost is four hours in MRI machine. The benefit is immeasurable.

As it turns out, getting the sham procedure was a blessing in disguise because it left me eligible for Solothurn. (I don't know this and maybe somebody else does whether or not having a pallidotomy on one side disqualifies you from a PTT on the other side.)

[camper1 in reply to MBAnderson]

I did read about your sham procedure and i think that’s what made me question if I wanted to go through all that and maybe be the unlucky one. I like that Solothurn has been doing the procedure longer and you have more symptom relief when finished.

[MBAnderson in reply to camper1]

Wise choice

[chartist]

Hi Marc,

I had replied to you in another post, but apparently that whole thread was deleted so I am replying to you here to make sure that you got the message.

I wish you good luck next week and beyond for the FUS procedure you are going to have! I hope your results are even better than you are expecting or hoping for.

I can hardly wait for your updates when you have time!!!

Art

[MBAnderson in reply to chartist]

Art,

Thank you for your support. I am believing the results will be stellar and therefore they will be.

I don't know if you've seen the before and after video on Lena's "FUS for Parkinson's" Facebook site of a woman named Summer Copeland, but it will bring tears of joy to your eyes. 16,000 views.

Truly miraculous. These people are given their whole life back.

My only apprehension is 32 hours in transit. Ugh.

[chartist in reply to MBAnderson]

32 hours is going to be rough! 14 hours for me was what felt like my limit! It would be very nice if they could figure out a way to to put you in suspended animation for such a long flight!

Unfortunately I no longer have a facebook account so I don't think I can see the video.

Again, good luck, Marc, I know you have been awaiting this procedure for awhile now!!!

Art

[MBAnderson in reply to chartist]

If only the Swiss don't close their borders within the next six days.

[chartist in reply to MBAnderson]

I was just watching a video where the the Iranian Health Minister was announcing that they had the Coronavirus under control and while he was saying it he was wiping sweat from his brow. The next day it was reported that he has the Coronavirus! Pretty scary stuff! I think Iran has 8 deaths from the virus already!

What is going to help this virus spread quickly is that during the first two weeks after infection, people show no symptoms, but can transmit the disease to others. Unlike SARS, which was not infective to others until symptoms were already apparent. China is trying to block the discussion of the Coronavirus on social media and that seems pretty telling!

Art

[MBAnderson in reply to chartist]

Iran now has 210 deaths.

[MBAnderson in reply to MBAnderson]

We have absolutely nothing to worry about here in the US. Mike Pence is in charge.

[MarionP in reply to MBAnderson]

I know, isn't if fabulous? Now that he's in charge there's a good chance the virus will simply disappear\never even show up in the 'States. Just like democracy.

[Parkie- in reply to chartist]

Hi Art

I don't have a Facebook account either and I was able to view the video using MBA's link in his other post on the subject: healthunlocked.com/parkinso...

[chartist in reply to Parkie-]

Parkie-,

I will check it out right now! Thank you!

Art

[chartist]

You just said a mouthful right there, Marc!!!

Art

[MarionP]

This is very good news indeed