for meningioma and brain tumour news
The government is to set out plans to speed approval of drugs used in the NHS in England, Wales and Northern Ireland.
The draft version of the constitution is expected to set out what patients and staff are entitled to from the NHS. This includes "fundamental principles" such as universal access to healthcare and drugs and treatments approved by NICE.
'Postcode lottery'
In Scotland, the equivalent role of NICE in approving drugs is undertaken for the Scottish NHS by the Scottish Medicines Consortium (SMC). The decision-making process is devolved from that in England, Wales and Northern Ireland and the SMC does not always make the same decisions as NICE on which drugs should be made available. The approval process in Scotland has proved to be quicker due to three-month targets for initial decisions by the SMC.
A Department of Health spokesperson said there was a false "perception" that some treatments approved by NICE were not universally available and the constitution would make the legal rights of patients more clear.
Health Secretary Alan Johnson said: "What we have heard from patients is that one of their major concerns is the perceived 'postcode lottery' in access to drugs - that there are too many variations around who gets access to prescribed drugs and that these variations are a lottery depending on where you live. "The draft constitution will address this by making it explicit that patients have the right to NICE-approved drugs if clinically appropriate." (BBC News 29.06.08)
· Rise in availability of unproven drugs online causes increasing concern
- The Guardian,
- Monday April 28 2008
A colour enhanced scanning electron micrograph (SEM) of a breast cancer cell. Photograph: Science photo library
The government was yesterday warned that cancer sufferers are at increased risk from websites selling unproven cures that could wreck the remaining months of their life. The controversy centres on a drug called DCA (dichloroacetate), a chemical being promoted and hyped across the world as a cure for cancer after news of preliminary laboratory tests on rats.
Dr Ian Gibson, chairman of the all-party parliamentary group on cancer, warned that increasing numbers of British people were purchasing such products, and urged the government to do all it could to highlight the problem and block sales from the websites. The proliferation of such sites was "an increasing problem which started in the United States and is growing almost daily here," he said.
DCA is a cheap off-patent chemical which was the subject of various largely unpromising trials for different diseases dating back around 20 years. It came back to prominence after research on early animal laboratory work by two scientists in Canada was published in the Cancer Cell journal in January last year.
The research by Dr Evangelos Michelakis and his colleague Dr Sebastian Bonnet showed regression of several types of cancer tumour, including brain, breast and lung, with no effect on healthy tissue. Their theory is that DCA restores the mitochondrial function, responsible for energy production, in cells damaged by cancers, allowing them to self-destruct and decreasing tumour growth. If they are right, they may have hit on a new approach to cancer treatment.
Subsequently, Jim Tassano, who runs a pest-control business in California, began to manufacture and sell DCA to all-comers on a website. The US authorities have attempted to stop a California-based website selling the drug, but the Guardian was easily able to obtain a tub of the powdered chemical, with a recommendation to try it with caffeine from strong tea and coffee. Tassano says he only wants to help people who have run out of options.
One of the scientists researching DCA's effect on cancerous cells is appalled. "The concern about this drug is that at this stage it is given to people who are very sick. Unsupervised, it could kill you," said Dr Michelakis, a professor at the University of Alberta who carried out tests in animal brain, lung and breast tumours and is now moving into human trials.
Tassano said in an email to the Guardian: "I am reluctant to speak publicly due to FDA [Food and Drug Administration] issues ... They have made it clear that they do not like high profile people. I am in a tough spot running both the information site on DCA and being involved with it economically as well. If the FDA takes action against me, it will be a big setback for DCA and cancer patients. I hope you understand."
The sale of DCA underscores how difficult it is for authorities to stop people purchasing potentially dangerous drugs on the internet. Gibson said he was very concerned that patients were being given false advice and erroneous information about drugs that had not been tested on humans. "I'm calling for these websites to be researched by the Department of Health and closed down instantly.
"We need to start a campaign to get the message out there that these sites are no good. If need be, we should be talking to the cancer institutes and charities in America to see what pressure they can bring to have the sites closed. But it's a very difficult thing to do. People will always turn to sites like these when they are desperate, so we need to make sure they know the facts."
Michelakis is moving as fast as he can into human clinical trials that will start to give some real answers. "The people who decide to sell this are like drug dealers. They are targeting the most vulnerable people you can imagine," he said.
Tassano and others believe those with terminal cancer should be allowed to take what risks they choose. Most doctors think patients should take calculated risks only within clinical trials, where they can be properly looked after if things go wrong.
Two doctors in Canada have broken ranks. Akhbar Khan, a GP, and his wife Humaira Khan, whose background is in public health, offer DCA at their Toronto clinic. They have been criticised by other doctors and regulatory bodies, but are allowed to use the drug because, although DCA is not approved as a cancer treatment, it is licensed for metabolic diseases.
Most of their patients are from Canada and the US, but some have made the trip from the UK.
"We haven't seen it cure anyone. It has prolonged life and given a better quality of life," said Dr Humaira Khan. "There's also the psychological aspect: the family feels they are doing something."
The couple are adding other unproven drugs to their repertoire as they hear about them. "The patients out there are researching like crazy and finding all sorts of things on the internet. They bring me lots of literature," said Dr Akhbar Khan.
On the basis of a few patients who said they had positive results from DCA and drank a lot of black tea and coffee, Tassano suggested that people try "the caffeine protocol". Yet he now warns on the site that the idea has resulted in death for some patients. "We are seeing very severe responses to the DCA-caffeine protocol in brain cancer patients. We have heard reports of a couple of people who were on high doses of DCA that started drinking caffeine and had very severe reactions: seizures and death followed," he said.
Dr Kat Arney of Cancer Research UK said the scenario around DCA was "probably the worst thing possible". "Cancer patients are taking this drug with no idea if it is safe, or at what dosage. It could make them very ill indeed."
The Department of Health said responsibility for websites selling medicines rested with the Medicines and Healthcare Regulatory Authority (MHRA). The MHRA in a statement said websites operating illegally in the UK had been closed down and said it was making efforts to alert consumers to the dangers of buying any medicines through the web.
Published with kind permission of The Guardian newspaper.This article appeared in the Guardian
on Monday April 28 2008 on p1 of the Top stories section. It was last updated at 11:32 on April 28 2008.
3. Late diagnosis is seen as a major reason why the UK has poorer survival rates than some other countries in Europe.
Patients are dying of cancer
because GPs are failing to identify their symptoms, the government's
top cancer expert has warned. Professor Mike Richards said botched
diagnoses were now 'a significant concern'.
The
government's recent Cancer Reform Strategy identified late diagnosis as
a major reason why the UK has poorer survival rates than some other
countries in Europe. Although the cancer death rate is falling, it
killed 153,491 Britons in 2005.
'There are 250,000 new patients
with cancer every year,' said Prof Richards. 'It's probably only a small
proportion who experience a missed or delayed diagnosis. It's a small
minority of patients overall. But it's not a negligible figure. We want
to reduce this to the smallest possible number.'
There are no official annual
statistics on the scale of the problem. But an unpublished joint study
by the Health Department and the National Patient Safety Agency, which
investigated records involving missed or late diagnoses of cancer
patients from January 2004 to November 2006, showed:
· More
than 1,900 patients - 55 a month - suffered a missed or late diagnosis,
though officials admitted the problem was probably much greater;
· Patients
waited for periods between a day and 23 months to have their condition
confirmed because of diagnostic errors, often at their GP's surgery;
· Breast, bowel and lung cancer were the likeliest to involve a botched diagnoses;
· Blunders
in hospitals added to delays in cancers being identified. These include
X-rays, biopsies or blood tests misfiled or misread.
Richards said some
GPs felt they could not refer patients for tests as often as they would
like in case hospitals became overloaded. 'Many patients are referred
the first time they go to their GP. But some will go three, four, or
even more times,' he said.
Cancer experts agree it can be hard for GPs to
identify correctly the signs of the disease, partly because the
symptoms of certain cancers are also those associated with many other
illnesses. A typical GP with a list of 1,800 patients will only see
eight or nine new cancer patients every year, and there are about 200
different types of cancer.
'Cancer is difficult to identify and
GPs sometimes get it wrong,' said Dr Steve Field, a Birmingham GP and
the chairman of the Royal College of General Practitioners. Many of the
signs of cancer, such as tiredness, weight loss and rectal bleeding,
are also associated with many other conditions, making diagnosis
difficult, Field said. (shortened version of report pub. The Observer, Sunday 13 Apr.08)
4. Post-menopausal hormone therapy may raise risk of meningioma
Last Updated: 2008-02-07 13:55:02 -0400 (Reuters Health)
By Karla Gale
NEW YORK (Reuters Health) - Hormone replacement therapy
(HRT) appears to be associated with the occurrence of meningioma,
investigators at the Mayo Clinic in Jacksonville, Florida, report in
the January 10th issue of the Journal of Clinical Oncology.
"I became interested in this subject when our Southwest Oncology Group found that tamoxifen (an estrogen blocker) showed modest evidence of efficacy in delaying meningioma growth in some individuals," Dr. Kurt A. Jaeckle told Reuters Health. Multiple lines of evidence link meningioma with female hormones, the researcher added, including expression of estrogen and progesterone receptors and higher incidence in women and in patients with breast cancer."So there is a logical, albeit unproven, connection," he said.
To investigate the relationship between a diagnosis of meningioma and HRT use, Dr. Jaeckle's team reviewed records for the 355,318 women ages 26 to 86 years treated at their clinic between 1993 and 2003. Of these, 18,037 were current or past users of HRT. They identified 1390 patients with a history of either symptomatic meningioma or clinically silent meningioma incidentally discovered on brain MRI. Overall, the prevalence of meningioma was 865 per 100,000 in HRT users and 366 per 100,000 in nonusers (adjusted odds ratio 2.2, p < .0001). The association appeared to be stronger among younger women, with an odds ratio of 4.1 for those aged 26 to 55 years.
For now, this issue is just one of many that the physician should consider in weighing the potential benefits and risks of HRT, Dr. Jaeckle advised. That said, important questions remain to be answered. "If a woman has an 'atypical' malignant or recurrent meningioma and is on HRT, should the HRT be stopped (or not started)? Do any of the benign meningiomas convert to more fast growing tumors if a patient is on HRT?"
Dr. Jaeckle and his associates are actively pursuing answers. "We are planning laboratory studies (eg, gene microarray analysis) to try to identify genetic profiles that predispose women to develop these tumors -- and ideally, whether particular gene patterns would identify women in whom oral contraceptives and HRT should be avoided -- presuming there is a cause-and-effect relationship." Until there is direct evidence of a link between HRT and a more malignant profile, he concluded, "I want to reassure women that in the absence of this information there is no call for alarm."
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