Man forced to seek treatment in USA for crippling disease after NHS cancels therapy

[Aurator]

If this is what they can do to a confirmed Lyme disease sufferer for whom effective treatment exists, what hope is there of any of us in the UK ever getting Rituximab on the NHS?

My prediction is that, however good the phase III Rituximab trial results turn out to be, the NHS are never going to pay for it to be given to ME sufferers. The struggle PWME have been engaged in for decades just to have their suffering taken seriously will be replaced by the whole new struggle of establishing entitlement to, and then getting, the treatment that can help. The state of the economy being what it is and what it looks set to be for years to come, I have a feeling that any remotely costly treatment for ME will simply never pass muster in Whitehall and therefore never make it into the bodies of PWME, who in some cases will have waited the best part of their lives just to see an effective treatment come into existence. Even when the light at the end of the tunnel is so close that it dazzles, PWME may never actually make it out of the tunnel they've been trapped in all these years.

 

[GONZ0hunter]

I know it's hard but try to stay positive. I know many cancer treatments are approved their.

Or you could stay negative, the trial may fail. Their are huge hurdles to jump through in getting it approved. I don't have a lot of hope that this disease will be cured in the near future.

Infusions alone are very expensive. In my are they are several $k each.

I try and celebrate every step forward as they come without putting too much hope on the new treatments.

As my favorite song says "don't expect too much and you won't be let down"

 

[Scarecrow]

I know it's hard but try to stay positive. I know many cancer treatments are approved their.

Or you could stay negative, the trial may fail. Their are huge hurdles to jump through in getting it approved. I don't have a lot of hope that this disease will be cured in the near future.

The issue is not whether the Phase III proves successful or not. If it isn't, it will be disappointing but we'll take it on the chin.

What's soul destroying is the injustice.

 

[duncan]

A difference with Lyme patients is they have an entire medical fraternity lobbying against abx therapy beyond a certain point. This also bleeds over into the clinician space, where doctors can be persecuted for treatments that do not conform with conventional protocol. You live in the Lyme shadows, and you are forced to look over your shoulders.

Getting Rituximab approved for ME/CFS patients shouldn't face this concerted opposition unless perhaps it comes from biopsychosocial groupies. Even then, it shouldn't be overt confrontational opposition. There will be hurdles, but few as structured and authoritative as those menacing Lyme community members.

 

[GONZ0hunter]

What's soul destroying is the injustice.

Their hasnt been any injustice in the new treatments yet.

I find it disheartening to have people say they arent treated fairly when it hasn't even happened yet.

 

[halcyon]

I agree @Aurator. I think rituximab being available on the NHS for ME patients or available on-label in the US is a pipe dream. I think that within the next five years it will be realized that this treatment isn't really appropriate for ME patients. With that said I do believe that the rituximab trials are important and will hopefully progress the science on this disease and will help bring us one step closer to an appropriate treatment.

 

[halcyon]

A difference with Lyme patients is they have an entire medical fraternity lobbying against abx therapy beyond a certain point.

There's no difference. ME has received the same lobbying from the medical establishment, just for slightly different reasons.

I think in this case in particular, the patient was probably cut off from the treatment mainly due to cost savings. Hence @Aurator's main point. If the NHS won't pay for more than a month of abx for a confirmed lyme case, how will they ever pay for long rituximab courses for the hundreds of thousands of patients in the UK.

 

[Scarecrow]

Their hasnt been any injustice in the new treatments yet.

I didn't say there had been.

I find it disheartening to have people say they arent treated fairly when it hasn't even happened yet.

Some people have been treated unfairly for decades. It's only natural to worry about the future when you only have bitter experience to go on. Doesn't mean it will work out as you fear but it's only natural.

 

[duncan]

I fear you may be inaccurate,
@halcyon . Feel free to correct me.

Has an entire formal medical body condemned a specific ME/CFS treatment over a protracted period of years? Did some of its key members side with insurance carriers to help deny treatments, and even argue against patients for disability benefits? Did some members pursue sanctions against doctors that ignored its rules? Do some still?

The IDSA, based in the United States, enjoys huge clout. When it issues guidelines, it's almost like a tacit understanding that the clinicians deviate from those guidelines at their own peril.

I'm not clear why the patient noted in the thread was severed from treatment. I do not see a cost reference, but it does note his therapy was cancelled.

 

[GONZ0hunter]

It will get better, it has already gotten better.

If the worst happens and your country stands in between you and your cure I will fight with you to get it. You can come stay at my house while you get treatment in the U.S. If it comes to it.

Their are a lot of people fighting for you, don't let the past ruin your outlook

 

[halcyon]

Has an entire formal medical body condemned a specific ME/CFS treatment over a protracted period of years?

Yes, by refusing to fund research into the disease for 30 years and take it seriously, the CDC and NIH have condemned all treatment possibilities for ME. At least lyme has a known etiology and is well accepted as a "real" disease. If you can't get your doctor to prescribe a long course of abx, at least you can buy as much as you want yourself from an Internet pharmacy. ME patients can't go buy rituximab or Ampligen off the Internet.

If you want to get a hint about how FDA approval for an ME treatment would go, take a look at the history of Ampligen. A slightly different situation because Ampligen had no prior approval for any other indications, but I imagine any ME treatment is going to face similar hurdles from the FDA.

 

[snowathlete]

I think Rituximab will be approved in the UK once there is enough evidence, and then some. It is normal for NICE to require plenty of evidence. I think the Norway trial will prove it works. I think it will take at least a UK trial on top of that, and probably another. But I see no reason why they won't approve it. It looks like we are talking about a good response rate and a significant improvement in those patients. Yes it is an expensive drug when you consider the associated costs, but I think people over state that because there are lots of other drugs that cost a lot lot more that get approved for a lot less impact.

What is happening with chronic Lyme is that there is not enough evidence that longterm antibiotics works, that treatment is appropriate. Not saying I think it is or isn't, just that there isn't yet enough evidence for NICE. That is the issue with Lyme. Nothing to do with the ME/CFS world. If those in the Lyme world capture enough evidence then it would become accepted as a treatment if it worked. There are no doubt hurdles to that in the Lyme world, just as there are in the ME/CFS world.

I dont think we should consider ourselves defeated already, we've made great progress in recent years. We're getting there.

 

[duncan]

@halcyon , the CDC and NIH are amorphous groups whose cold touch isn't exclusive to ME/CFS. Each of those agencies seem to avoid both diagnostics' and treatments' research for late stage Lyme. The cries of mischaracterization of the Lyme community ring just as loudly as they do in the ME/CFS world. However, over and beyond that, we have an additional independent agency running roughshod over the entire Lyme community.

ME/CFS has its burdens, not doubt, some arguably worse than Lyme sufferers have to bear. But to have clinicians fear for their medical license in fifty states, and patients denied available treatment, and then refused disability if those treatments that are doled out fail...all stemming from formal Guidelines issued by a private medical society...No, I don't think that has happened yet to the ME/CFS community, thankfully.

ME/CFS has been underfunded and misrepresented and disparaged. Still, the things you accuse the NIH and CDC of in the ME/CFS landscape, also apply to Lymeland. But outside the BPS school, ME/CFS has not been the target of a concerted campaign by an independent and powerful agency to curtail available treatment options and restrict diagnostic avenues to its preferred regimen.