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Rituximab, Genentech and Tony Fauci, at CFS Central

kurt

Senior Member
Messages
1,186
Location
USA
Genentech has no financial incentive to conduct an ME/CFS study for RTX use, their RTX patents are expiring in the next few years, probably before a serious study would be concluded. At least one company is already working on a generic, so that might explain the lack of interest by Genentech/Roche. Clinical trials by drug/biologic makers are not humanitarian ventures, they are an investment with a profit motive. Personally I think they might profit from RTX in ME/CFS, but that would be years and years from now, and given the complexity of ME/CFS and the risks involved in a major drug trial, I can understand their position, from a pure business point of view anyway.
 

Desdinova

Senior Member
Messages
276
Location
USA
This is shear stupidity on that companies part. But then again who can blame them when the world wild dominate view of ME/CFS is one that says it's just one or even multiple mental disorders. Then take into account that whomever replied from the drug company more then likely knows next to nothing about ME/CFS and it's history. They more then likely think that this is an extremely rare (mental) disorder.

To change that we would have to launch a campaign which emphasizes the long term financial benefits this move could mean for them. Point out who the World Health Organization is. Point out that they classify ME as a neurological disorder and for how long they have done so. Point out that many of the world governments health bodies insist that CFS and ME are one and the same. And the estimated number of those infected.

Point out to them that they aren't putting money into a new drug but an existing one (ie they aren't developing (reinventing the wheel) something from scratch). And that by doing this it's no different then spending money on an add campaign. After all those are in a sense investments right and, that they should look at doing the studies as an investment.

And by doing so you establish yourself as one of the first companies to market to this patient group. Most importantly that by doing so they are not proving or calming this to be a permanent cure. They are not claiming that ME/CFS is mental, viral, autoimmune or anything else until the scientific facts have been vetted. Your only claiming whether it helps alleviate the symptoms, which ones and for how long.
 

Roy S

former DC ME/CFS lobbyist
Messages
1,376
Location
Illinois, USA
I have found generic rituximab listed as low as $2850 for the two doses on a Canadian website. It's understandable if Genentech chooses not to fund a trial.
 

SilverbladeTE

Senior Member
Messages
3,043
Location
Somewhere near Glasgow, Scotland
Quite. You'd have thought that contributing to medical science would be incentive enough. Clearly not.

If you live in a world where 0.1% of the population, your "group", owns up to 90% of the wealth,who dine on $1,000 meals, own several mansions, hire entire resorts for corproate retreats...
well, the Lumpen Mass of the rest of Humanity doesn't count for much, does it?
 

SilverbladeTE

Senior Member
Messages
3,043
Location
Somewhere near Glasgow, Scotland
What system works better? And what is your evidence?

GG
Oh, I'm not syaing there's a one specific system that's been "tried, tested and approved on a global scale", no
merely that what we do have is a lead torpedo on the way down to the Abyss, taking our civilization with it, so we better bail out and come up with something better afore we become shark bait.
Cannot be fixed from within, they've made sure of that.
*points to all the recent economic issues, including growing organized push to disenfranchise the "money draining" disabled*
;)
 

Tony Mach

Show me the evidence.
Messages
146
Location
Upper Palatinate, Bavaria
What system works better? And what is your evidence?

Oh, so someone should build and test a better system first (against the 1% who are deeply invested against any such change) and then present such a better system on a silver plate? Well in that case, you are fully correct to assert that there isn't a better system. Enjoy having ME/CFS in capitalism.
 

Battery Muncher

Senior Member
Messages
620
Well said Tony Mach.

In any case, a brief look towards Scandinavian social democracy, circa 1970ish-80ish, suggests that there is plenty of room for progress.
 

currer

Senior Member
Messages
1,409
As the UK has moved politically to the right in the last thirty years we have seen an underlying shift in values.

In my past in the UK, I can remember areas of human endeavour, such as the arts, medicine, education and scientific research being recognised as worth pursuing in their own right.
It was understood among the political classes that they had value in themselves, which was not connected to monetary value.

We have since seen a political philosophy grow up which has overwhelmingly substituted monetary values for all these other values, so that now everything is judged by a financial measure, however inappropriate.

This is destructive of valid areas of human interests, aspirations, culture and endeavour, where the goal is not financial. In fact it is damaging to human beings themselves.
Rather than leading to growth and prosperity, this change has blocked, restricted and damaged us culturally and socially.

Isn't healing the sick worth doing in its own right?
Should there be a financial motive to medicine?
Cant a society be content with making money in other areas where it is more appropriate and then spending some of the accumulated wealth on medical care?

If you will only accept financial gain as a motive in medicine you reduce your patients to monetary units, not human beings. In some instances then, it would be more to society's interests not to treat useless or unprofitable patients, or to euthanase them.

Are we there yet?
 

SilverbladeTE

Senior Member
Messages
3,043
Location
Somewhere near Glasgow, Scotland
Currer
as I've said, we've been "going down the rabbit hole..."

recent talk by Those In Power about the cost of treating those with cancer, diabetes etc show the problem
then the scum have the arrogance o blame the victims
well laddie-da, who was it who punted all that cheap, sugary food at the Public?
All that cheap alcohol and tobacco who's tax revenue the government lapped up, hm?

Also, the UK's government made another step to eradicate the disabled, they want to remove the right of the disbaled to Legal Aid for when they try to fight for disability allowance,
ie, if you get thrown off welfare by those scumbags at ATOS, you won't be able to afford to appeal against this!
and note, 70% of appeals have won because ATOS is either grossly incompetant, or deliberately designed to deny the disable welfare...

http://www.bbc.co.uk/news/uk-politics-15512827

Warning over legal aid cuts for disabled people
The legal aid changes have been criticised by members of the legal profession Continue reading the main story
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Mounting concerns over legal aid
Legal aid cutbacks are unveiled
Ministers are being urged not to restrict legal aid for disabled people wanting to challenge benefit decisions.

A coalition of charities including Scope and Mind argues that limiting access to "vital" help in England and Wales would harm vulnerable people.

Labour says the plans due to be debated by MPs later are "unprincipled".

But the government insists the 2bn legal aid bill is unaffordable and help has to be targeted at the most serious cases and those most needing support.

Ministers are looking to prune 350m from the civil legal aid budget by 2014-5 as part of cuts across government to reduce its deficit.

Justice Secretary Ken Clarke has argued that the legal aid bill has spiralled in recent years and, with resources being squeezed across Whitehall, only cases where life or liberty are at stake should be routinely funded out of the public purse.

It is thought there will be 500,000 fewer civil cases as a result.

'Serious impact'

The 23 organisations, which also include Mencap, the RNIB and Leonard Cheshire, want MPs to back an amendment to the Legal Aid and Sentencing Bill - put forward by Lib Dem Tom Brake - reversing the decision when the proposed legislation is debated.

The disability rights groups say the changes mean up to 80,000 people will no longer be able to get access to publicly funded legal advice to help them challenge benefit decisions.

Campaigners say those affected will not be able to find legal help elsewhere and it could have a "serious impact" on their finances and peace of mind - making it harder for them to return to work in the future.

Continue reading the main story

Start Quote
Cutting legal aid in this area will make it harder for disabled people to get the right support and ultimately could drive more people further away from work
End Quote
Richard Hawkes

Chief executive, Scope
"Legal advice is vital for disabled people if they fall foul of poor decision-making, red tape or administrative error," Scope's chief executive Richard Hawkes said.

"For welfare reform to work, disabled people have to get support to appeal decisions relating to their benefits, especially within a system where errors are commonplace.

"Cutting legal aid in this area will make it harder for disabled people to get the right support and ultimately could drive more people further away from work."

Citizens Advice has warned the plans could be counter-productive since the 16m in anticipated savings will be exceeded in the long-term by the costs to the state as peoples' problems "spiral out of control".

'Cuts targeted'

The Ministry of Justice said the move was necessary as part of plans to scale back the legal aid bill.

"We have one of the most expensive legal aid systems in the world which in the current financial climate we just cannot continue to afford," a spokeswoman said.

The review of legal aid, she added, would ensure it was "targeted at the most serious cases and those who most need legal support".

"Legal Aid will continue to be available in many types of cases including where someone is at risk of serious violence, losing their liberty or their home, or where children may be taken into care as well as for mental health, community care work, and child abduction."

'Economically unsound'

But Labour said the proposals would limit access to justice to those who could afford it.

"Receiving legal advice to prevent escalating housing, welfare and debt problems has been shown to save the taxpayer money further down the line, demonstrating just how economically unsound as well as unprincipled the plans are," shadow justice secretary Sadiq Khan said.

"Savings must be made to bring the legal aid budget down but it should be through other areas such as retendering criminal law contracts, not by restricting access to legal aid for those in greatest need."

Following a public consultation earlier this year, Mr Clarke amended the plans so as to protect access to legal aid for victims of domestic violence in private family cases and for children at risk of abuse or abduction

AREBIT MACHT FREI
That is an Evil that will not die easily :/

(and NO, "die" does not a call to violence or any such)
 

Mya Symons

Mya Symons
Messages
1,029
Location
Washington
E-mail address and Office address

Mindy, do you have his e-mail address and/or the address of his office? Do you think it would help to get as many people as possible to e-mail him?