By Helen Tomlin an asbestos-related disease lawyer at Irwin Mitchell

With a decision expected imminently from NICE (National Institute for Health and Care Excellence) in relation to the funding of immunotherapy for treatment of malignant mesothelioma, there has been much discussion amongst legal practitioners reflecting on the potential implications of the decision for patients.

As is widely known, NICE is the gatekeeper to the availability of new drugs for NHS patients. It makes recommendations for health and care. Put simply, if a drug is approved by NICE, it is likely to become widely available for patients being treated on the NHS. If a drug does not satisfy the NICE assessment guidelines, the drug is not made available for patients.

Explosion of drugs available to help treat mesothelioma patients

The last few years have seen an explosion in the number of drugs available for treatment of patients with mesothelioma, far more than I ever imagined possible in the earlier years of my career as an asbestos lawyer. 

I have been in practice long enough to remember when chemotherapy, then known as Alimta, was first proven to be of benefit to mesothelioma patients; the money to receive chemotherapy privately was included as part of the settlement of the legal claim, until NICE approved Alimta for use on the NHS. 

Since then, mesothelioma patients have routinely been offered six cycles of chemotherapy as part of their NHS treatment pathway, unless there are contra-indications to its use.

Over recent years a number of new treatments have become available to use for mesothelioma patients, but these are not yet approved by NICE. Because they are not approved, the new drugs have usually only been available either through private routes or as part of a clinical trial. Of course, the problem with the private route for most is that the drugs are extremely expensive, in the region of £45,000 for one three month cycle of treatment, far beyond the reach of most sufferers of the asbestos cancer.

Hope that more drugs are approved following successful trials

At the beginning of the pandemic, one particular immunotherapy drug, Nivolumab, was licensed for the treatment of mesothelioma on a temporary basis. It is to be hoped that continued funding will be made available for the future, although even this is not certain. The Cancer Drugs Fund, which made the recommendation to fund Nivolumab in response to the pandemic, reviews its recommendations every three months, and approval for the drug could be withdrawn at any future review. Anyone who is already on the treatment will still have access to the drug, but there would be no new treatments commenced, should approval be withdrawn.

NICE was due to provide its decision on the approval (or not) of another new treatment, this time with two drugs, known as Ipilimub and Nivolumab. Ipi/nivo, as it is known, has been through extensive medical trials, and has been shown to be successful in extending the survival times of patients with mesothelioma, particularly those patients who have sarcomatoid mesothelioma. The decision was due to be made public on 13th October 2021, but at the time of writing, no decision has yet been published. 

We all fervently hope that, given the scarcity of new treatments for mesothelioma patients since 2006 and the successful results shown in clinical trials, NICE approve the use of ipi/nivo and increase the options for treatment for clinicians dealing with mesothelioma.

However, in the event that approval is withdrawn for Nivolumab, and the combination treatment of ipi/nivo is not approved, the picture for newly diagnosed sufferers of mesothelioma would begin to look rather more bleak.

The truth is that if the decision of NICE is that immunotherapy should not be approved for use on the NHS, the likelihood is that all of these drugs will be beyond the reach of the vast majority of patients.

The importance of legal advice

Recently, I have been advised that once newly diagnosed patients have received state benefits, only 50 per cent of those go on to seek legal advice. By extension, therefore, 50 per cent of mesothelioma patients would have little opportunity of accessing non-NHS treatments, which may or may not extend their life.

Of course, not all of those diagnosed with the life-limiting disease will be able to bring separate legal claims, and not all of those diagnosed with mesothelioma will be suitable for immunotherapy treatment, or would respond well to the treatment. However, there may be a significant number who would benefit from the treatment, who may not just be missing out on significant compensation to ensure financial security, but may also be missing out on treatments which, for certain types of tumour, have shown remarkable improvements in life expectancy and quality of life.

It is so important, now more than ever, that patients are encouraged and referred to specialist solicitors in their local area with experience of obtaining settlements that include the costs of obtaining non-NHS funded treatment. Even where patients and their families are initially reluctant to discuss the prospect of legal advice, and may not be interested in ‘a claim’, our experience is that many patients do seek legal assistance once they learn of the potential funding for new treatments not available on the NHS.

However, if such referrals are not received until the patient is some way into their treatment, the potential for specialist solicitors to secure the necessary funding from liability insurers in time for the treatment to be effective is much reduced. Early referrals are therefore essential, even if it is just for an exploratory discussion so that patients are aware of their options and the timescales they have in which to seek advice and make important decisions.

Find out more about Irwin Mitchell's expertise in helping people and their families following a diagnosis of mesothelioma or other industrial diseases at our dedicated asbestos disease section.