32 replies to this topic

[GerryL]

Hi Traci,

Just to let you know it is would be as safe to buy a drug manufactured in Australia as in the US.

Gerry

[CDW]

this hits home pretty hard as I'm a UK national living in the US on Tasigna. fortunately i'm doing well on Tasigna but when i return home i fear for my well being if i don't continue to do well on it. one of the inconsistencies i cannot reconcile is the difference in cost between Gleevec and Tasigna/Sprycel. from what i've seen on the internet, costs are similar for all three drugs (notwithstanding different costs associated with different dosages), I am unsure then what the argument is regarding effectiveness. if it is truly a cost issue then i would be expecting to see a greater than 10-15% higher cost for Tas/Spry - but it's simply not there based on freely available data. These drugs are no less effective than Gleevec and (apparently) no more expensive, so what's the problem? As others have surmized, it is likely posturing by NICE to lower the price, while gambling with patient lives. quite frankly i'm having a serious re-think about returning to the UK and would currently prefer to take my chances with the US insurance companies over the NHS; after all Ohio has their high-risk insurance pool which does cover Tasigna.

in many ways the US has one of the best health care systems in the world; accessibility just needs to be addressed. getting the Fed Gov't to manage it is not the answer. On the plus side, David Cameron (UK PM) recently established a $300M (200M pounds) fund for non-approved cancer drugs, so people can apply for this - apparently the paperwork is a little cumbersome which is proving to be a deterrent.

I'm ashamed the UK (NICE) has taken this posture and am not looking forward to being on the receiving end in the future.

Chris

[CallMeLucky]

http://www.newsshopp...ving_treatment/

[Happycat]

Gerry,

Ha, ha, I know that!  My big concern with the motilium was that I was technically illegally importing a drug into the US, meaning the feds could sieze it in customs.  I believe it is an OTC drug in Australia, so that's why I could get it without a Rx.  Thank goodness, because the only US alternative here causes post-partum depression.

Anyway, like I said, you do what you gotta do.  My mom spent a year or two getting her drugs in Canada when she lost her health insurance here.

Traci

[Happycat]

Chris,

I honestly think the pharmas are pricing the drugs at what they think the market will bear, and NICE is just pushing back on that.  If you look at the per gram cost, Gleevec has got to be a lot cheaper, since 400 mg is the standard dose, and Tasigna and Sprycel are usually sub-100 mg doses, yet cost per month of pills is about the same.  But it's not like patients what to be caught in a price dispute between pharma and insurers!  Or the government minders.

Well, hopefully, they will work it out, and soon.  I can understand how disturbing this must be to you.  Can't imagine how other UKers going through it right now must feel.

Traci

[CallMeLucky]

http://www.youtube.c...h?v=ad1Umj6hxMw

[everonward]

Hi Chris

You could always re-settle in Wales or Scotland where UK patients have free access to 2nd generation TKIs it is only in England that Nice are saying if you fail Glivec it's Transplant, Peg or Peg it.

Our plan - in the unlikely event that after 5 and a half years on 400mg Glivec - I fail for waht ever reason is to move to one of the afore mentioned countries.

Marian (in the UK)

[Happycat]

Snort!  Thanks for the laugh, Cornholio!

[CallMeLucky]

http://www.telegraph...ug-refusal.html

Expert clinicians oppose leukaemia drug refusal

Medical experts have spoken out against a decision by the NHS treatment  rationing body to deny three types of drugs to leukaemia sufferers.

By  Martin Beckford, Health Correspondent 12:01AM BST 23 May 2011

Follow Martin  Beckford on Twitter

Comments

In a letter published in The Daily Telegraph, four leading  haematologists call on the watchdog to reverse its "disappointing" decision not  to allow patients in England to receive the potentially life-saving medication.

They say the arguments put forward by the National Institute for Health and  Clinical Excellence (Nice) are "perverse", "inconsistent" and show that it is  "struggling" to cope with medical advances made more than 10 years ago.

The professors also suggest that the regulator, which rules on which drugs  and procedures should be funded by the NHS in England and Wales, risks losing  public confidence.

Their letter comes after Nice ruled there was not enough clinical evidence  that the three types of medication, which could help 1,000 people a year who do  not respond to the standard treatment for a type of blood cancer called chronic  myeloid leukaemia (CML), were clinically effective despite costing up to £40,000  a year per patient.

The experts, from Imperial College London, Royal Liverpool University  Hospital and Queen Elizabeth Hospital, Birmingham, write: "We are disappointed  with the recent National Institute for Health and Clinical Excellence (Nice)  Appraisal Committee's preliminary negative recommendation for three clinically  effective therapies for chronic myeloid leukaemia resistant to the current first  line therapy, standard dose Glivec."

They say such drugs have "transformed" treatment of the rare disease, turning  it into a condition that patients can live with while placing little additional  burden on the health service.

The haematologists also point out that the three treatments turned down as  secondary treatments by Nice - known as dasatinib, high-dose imatinib (Glivec)  and nilotinib - are available to patients in 90 countries worldwide including  Scotland.

They go on: "We find the Committee's arguments in support of this decision to  be perverse, inconsistent and demonstrative of an organisation struggling to  accommodate to the demands that such innovative therapies place upon procedures  developed over a decade ago."

The experts conclude that the Government is aware of the problem with paying  for costly but effective treatments for rare diseases, as it has set up the  £200million Cancer Drugs Fund as a last resort for patients denied help by their  local NHS managers, but that "it is vital that public bodies, like Nice,  continue to retain the public's confidence as impartial, evidence driven  appraisers".

David Ryner, a trustee of the CML Support Group, said that Nice struggles to  assess treatments at the "cutting edge of pharmaceutical innovation", an area in  which Britain excels.

He also suggested that Nice takes into account cost pressures on the NHS,  which has to make £20billion of efficiency savings by 2015, as well as the  existence of the Cancer Drugs Fund, when it makes its rulings.

But Mr Ryner warned that leukaemia patients denied effective treatments by  Nice may not even be able to obtain an alternative through the new fund because  of high demand.

He said: "Nice negative appraisals cannot be foretold so it is impossible to  calculate exactly likely demand made on the Fund from this source and it is  important to realize that this is only one type of demand to be made on the  Fund.

"Patients whose clinicians seek access to the Fund for reimbursement are then  possibly going to encounter an exhausted Fund towards the end of a financial  year."

[Taylor]

Good to see some important people publically pushing back.  Thanks for the update Lucky!

[CDW]

Thanks for posting the update Gary, I hadn't seen it myself but as Taylor said, it's pleasing to see the experts wade into the debate. It wasn't that long ago the European Council approved Tasigna as a first line CML treatment yet NICE is still dragging their heels approving it as a funded alternate. I think i mentioned before the take-up on the 200M Cancer Drug Fund has initially been low primarily due to confusing rules/procedures behind it. The absurdity is the money all comes from the same (treasury) pot but with some additional hurdles thrown in.

Chris

[Tedsey]

What is preventing private insurance companies from doing the same?  Just gotta hope those in charge have their morals in tact and the political forces remain on our side (oh, and some profit is to be made in one way or another--seems to be what keeps things in the ring in our capitalist system, so morals probably will remain lowest on the list).  It appears the NICE panel in the U.K. isn't so nice.  I am sure people have already exhausted all comments on the irony of this acronym.

[CallMeLucky]

In theory it's market competition, of course I don't fully believe this as I don't believe insurance is a free market.