English Regional Health Service (RHS) rationing: cancer patients will be denied life-extending drugs

As borderline benefit and very expensive treatments are withdrawn and Hospitals increase their deficits, the safety net mesh becomes larger, and more patients will fall through it. Calling this anything other than rationing is wrong, and it is covert in that patients do not know what will not be covered until they are ill. Doctors have, in the opinion of NHSreality, a duty to present ALL the options to patients, even if some of these are outside of their own RHS. This means keeping up-to-date and being aware of the options. Myeloma is a good example where expensive but effective treatments, if used early enough can gain  a remission. There is rightly more fear of being excluded, but even more important, your doctor may not be aware of all the options, and there is no national/international process to keep him informed. The easy option for a GP is to simply refer to the local Hospital…. Their budget and resources restricts what they can offer…. QED. Why do we need a “drugs fund” if there is no rationing? Update 5th September – The Times reports the “Outrage as NHS cuts funding for dozens of cancer drugs”

Laura Donnelly, Health Editor reports 4th September 2015 in The Telegraph: Thousands of cancer patients to be denied treatment – Common drugs for breast, bowel, prostate, pancreatic and blood cancer will no longer be funded by the NHS following sweeping cutbacks

More than 5,000 cancer patients will be denied life-extending drugs under plans which charities say are a “dreadful” step backwards for the NHS.

Health officials have just announced sweeping restrictions on treatment, which will mean patients with breast, bowel, skin and pancreatic cancer will no longer be able to receive drugs funded by the NHS.

In total, 17 cancer drugs for 25 different indications will no longer be paid for in future.

Charities said the direction the health service was heading in could set progress back by centuries.

The Cancer Drugs Fund was launched in 2011, following a manifesto pledge by David Cameron, who said patients should no longer be denied drugs on cost grounds.Since its launch four years ago it has benefitted more than 50,000 patients, who received treatment which NHS rationing bodies had refused to pay for.

But now the fund’s budget is massively overspent.

At the start of this year, health officials announced plans to stop funding 25 treatments received by 8,000 patients.

After appeal, six treatments were saved. Now a second round of cuts will see NHS funding stopped for 25 more which have been hailed as some of the most promising, for those with no other hope.

The decision means that in total, two thirds of all treatments which were paid for by the scheme will no longer be paid for by the NHS.

Drugs which will no longer be funded include Kadcyla for advanced breast cancer, Avastin for many bowel and breast cancer patients, Revlimid and Imnovid for multiple myeloma, and Abraxane, the first treatment for pancreatic cancer in 17 years.

Breast cancer charities said they were particularly concerned about Kadcyla, currently prescribed to around 800 women a year, which has been shown to extend life by an average of six months, with fewer side effectives than any alternatives.

Samia al Qadhi, Chief Executive at Breast Cancer Care, said: “This devastating decision will mean shattered hopes for thousands of women who could have been helped by these drugs.

“It is completely unacceptable that, in 2015, this inflexible system is blocking access to life-extending treatments, like Kadcyla. Treatments that could give people valuable extra time with their loved ones, and help them continue to contribute to society for many months or even years.

“We desperately hope these failings will be tackled by the new system. However, we are extremely concerned that until this new system is up and running patients will continue to face huge uncertainty over access to drugs. It is crucial the needs of those with incurable breast cancer are placed at the heart this process.”

Baroness Delyth Morgan, chief executive at Breast Cancer Now said: “This is a dreadful day for breast cancer patients.

“Kadcyla is a one-of-a-kind drug proven to extend life, and the fact is that because government, the NHS and the pharmaceutical industry have failed to agree realistic prices for new drugs, some women will die sooner.“Despite many families relying on it, the CDF has unfortunately failed, and today’s delisting will further reduce the NHS’ ability to keep pace with Europe in the treatment of breast cancer.”

Avastin will no longer be funded for bowel cancer, breast cancer and cervical cancer. Manufacturers Roche said until now 2,500 patients have received funding for these drugs.

Mark Flannagan, Chief Executive of the charity Beating Bowel Cancer, said: “This is a deeply disappointing day for bowel cancer patients. Yet again we will see more and more patients being denied proven, clinically effective, internationally recognised standards of treatment.

“These changes will restrict the scope for patients to make choices about treatments that could extend their lives and will reduce a clinician’s ability to prescribe treatments according to a patient’s clinical need.

“Nothing has changed in terms of the clinical effectiveness of these treatments. They remain as clinically effective now as they were when they were added to the list of funded drugs. We understand the financial pressures that the NHS is under, but these changes will restrict patients’ ability to choose treatments that we have seen extend lives and will reduce a clinician’s ability to prescribe treatments according to a patient’s clinical need.

“By taking away from tomorrow’s cancer patients what is available today, we are effectively taking a step backwards for cancer treatment in this county compared to other countries in Europe and the world. We urge all parties to think again and not give up on bowel cancer patients.”

Andrew Wilson, chief executive of the Rarer Cancers Foundation, said: “These cuts will be a hammer blow to many thousands of desperately ill cancer patients and their families.

“It is deeply disappointing that NHS England has pressed ahead with knee jerk cuts to the CDF before introducing the reforms to NICE that are so urgently required. Ministers told us they wanted to work with charities to develop a solution but now the NHS has announced big reductions in access to existing life-extending treatment, with no action to make available the newest game-changing drugs. This is a complete breach of faith.”

He said he was concerned that the latest round of cuts are the start of “even more savage reductions” in access to cancer treatment.

“We want urgent assurances from the Government and the drugs companies that there will be no reduction in the resources available to the CDF until NICE has been reformed and these changes have been proven to deliver improved access to clinically-effective cancer drugs,” he said.Access to two treatments for multiple myeloma, which were received by 1,500 patients last year, will be stopped.

Patients with relapsed and refractory multiple myeloma will not be able to access Revlimid or Imnovid from November.

Eric Low, Chief Executive of Myeloma UK commented, “The news that life-prolonging myeloma drugs are being removed from the Cancer Drugs Fund is awful and represents a massive step backward. If this trajectory of travel continues, we’ll be back to the 1800s in the treatment we’re offering patients.”

Charities said the whole system of NHS funding for medicines was now in chaos.

Under the current rules, the National Institute for Health and Care Excellence evaluates medicines to decide if they are cost-effective and can be funded on the NHS.

If it rules against, drugs can be funded under the Cancer Drugs Fund.

When the fund was created, officials said it would pay for any treatment which an NHS consultant sought.

But amid budget overspending, in January, the rules were changed, so that only those on an official central list are paid for.

Meanwhile other routes to access drugs have been set up.

Under an Early Access to Medicines Scheme, drugs manufacturers have paid for treatment for patients who are given innovative medicines as part of research.

But there was an outcry last month when it emerged that funding stops for treatments, as soon as they are proved good enough to license.

Charities have said the system of drug funding had become “a total shambles” with confusion among patients and doctors about how to obtain treatment.

The Cancer Drugs Fund has continuously gone over its initial £200 million annual budget.

The Government pledged extra cash in January to make the fund now worth £340 million a year.

Charities said the system does not work and needs to be overhauled.

Mr Low said: “Since the creation of the Cancer Drugs Fund, Myeloma UK has consistently argued that it is not a long-term solution to accessing cancer drugs on the NHS and does not address the reasons why drugs were not approved by Nice in the first place.

“The Government has been far too slow to address the critical flaws of the Cancer Drugs Fund and has let things develop to the stage where important and life-prolonging drugs are being delisted from the Fund. The reality is that it is patients that are going to suffer as a consequence of this idleness.”

Professor Peter Clark, Chair of the Cancer Drugs Fund, said: “There is no escaping the fact that we face a difficult set of choices, but it is our duty to ensure we get maximum value from every penny available on behalf of patients. We must ensure we invest in those treatments that offer the most benefit, based on rigorous evidence-based clinical analysis and an assessment of the cost of those treatments.”

Health officials said the proposed decisions are not final, and that pharmaceutical companies had an opportunity to cut prices to ensure drugs provided satisfactory value for money.

Some negotiations are underway, officials said.

NHS England and NICE will shortly be consulting on a proposed new system for commissioning cancer drugs.

Patients currently receiving the drugs to be removed from the fund will continue to be able do so.

Andrew Gwynne, Labour’s Shadow Health Minister, said: “At the election the Tories promised they would continue to invest in cancer drugs. This is yet another broken promise, from a Prime Minister who can no longer be trusted on the NHS.

Analysis by the Rarer Cancers Foundation suggests the changes will see treatments denied to around 5,500 patients, including:

Blood cancer – 1,759 patients

Breast cancer – 986 patients

Bowel cancer – 845 patients

Prostate cancer – 601 patients

Upper gastrointestinal cancer – 549 patients

Brain and central nervous system – 229 patients

Gynaecological cancer – 188 patients

Urological cancer – 376 patients

This entry was posted in A Personal View, Patient representatives, Rationing, Stories in the Media on by .

About Roger Burns - retired GP

I am a retired GP and medical educator. I have supported patient participation throughout my career, and my practice, St Thomas; Surgery, has had a longstanding and active Patient Participation Group (PPG). I support the idea of Community Health Councils, although I feel they should be funded at arms length from government. I have taught GP trainees for 30 years, and been a Programme Director for GP training in Pembrokeshire 20 years. I served on the Pembrokeshire LHG and LHB for a total of 10 years. I completed an MBA in 1996, and I along with most others, never had an exit interview from any job in the NHS! I completed an MBA in 1996, and was a runner up for the Adam Smith prize for economy and efficiency in government in that year. This was owing to a suggestion (St Thomas' Mutual) that practices had incentives for saving by being allowed to buy rationed out services in the following year.

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