Action Mesothelioma Day: A time to remember, a time to keep up the fight

On Friday 5 July asbestos victims support groups across the country will gather for Action Mesothelioma Day.  This year, in Manchester, the keynote address to the public meeting will be given by Lorraine Creech of the national mesothelioma charity Mesothelioma UK.  She will speak on “The Way Forward” for mesothelioma in 2019. 

We have seen significant advances in the treatment of mesothelioma over the last decade, but looking at past lessons might help us to learn how we can develop even further.  As legal practitioners and campaigners, our ultimate goal has to be to strive to ensure access for all to full treatment.

Mesothelioma UK was established in 2008.  Since then it has part-funded twenty four mesothelioma clinical nurse specialists nationwide and its head of service, Liz Darlinson, was recently awarded an MBE. 

Mesothelioma UK continues to publicise details of clinical trials available across the UK in it’s regular magazine. It will shortly release an app containing up to date details of those trials, because the turnover of available trials means that the published information is more often than not out of date once it returns from the printers.

In 2019, there does seem to be a way forward for mesothelioma.By contrast, prior to 2008 those who were diagnosed with Mesothelioma had little such support and significantly less hope. 

On 1st January 2008 the National Institute for Health and Care Excellence published Technology Appraisal Guidance [135] which for the first time licensed the use of what was then commonly referred to as Alimta, and is now better known as Pemetrexed; a standard first line chemotherapy treatment for mesothelioma. 

When the first call to action for mesothelioma victims was raised less than two years before, people with mesothelioma were being denied chemotherapy based on where they lived.  Even obtaining what we now consider to be a standard treatment, a pre-requisite, was a battle.

There was a period that followed where little further progress was made.  In 2014 the former shadow health secretary, Andy Burnham, stood with us in Manchester and promised more funding from government for research should Labour be elected in 2015. 

What followed was a House of Lords debate and a subsequent government promise of additional funding.  That funding, and funding from charitable trusts, lead to the development of the National Centre for Mesothelioma Research in 2016.  Since then innumerable clinical trials have been opened up to mesothelioma sufferers.

It seems then that we have come a long way.  One of the most recently opened trials, the MiST trial under Professor Dean Fennell in Leicester, now seeks to identify personalised treatment based on patient profiling.

Whilst those who work with mesothelioma sufferers are undoubtedly positive about these developments it is not possible for all sufferers to access all trials.  Moreover, by their very nature such trials often include a placebo arm where the trial drug is not delivered to the sufferer. 

Many sufferers with pursuable civil compensation claims are seeking to avoid the placebo lottery and seek treatment in the private setting.  Unfortunately, and with echoes of the situation before 2008, there is not a level playing field for those who currently seek to access to unlicensed second line treatments.

As asbestos lawyers, we are now instructed to pursue a claim for the cost of future treatment as part of a compensation claim being raised by our clients.  At present this usually refers to pursuing the cost of immunotherapy drugs such prembrolizumab, nivolumab or ipilimumab. 

These drugs have been the subject of small trials which have shown that they may extend the life of a mesothelioma sufferer in approximately 1 in 4 or 1 in 5 cases.  When faced with the prospect of a terminal illness, pursuing such treatment in the absence of any other second line treatment is of course something that a lot of sufferers put great importance on.  

However, as the treatment is not licensed in the UK, and is not likely to be in the short term, the cost of it has to be met by the sufferer.  The cost of the treatments can be very substantial and beyond the means of many sufferers.  Anyone who pursues a compensation claim against their former employer can seek the costs of such treatment. 

To recover the cost of such treatment the Claimant has to prove it is reasonable for him or her to undergo the treatment, but given the poor prognosis in mesothelioma claims, the court is unlikely to find it is unreasonable to seek this treatment in the context of a potentially extended life expectancy. 

However, much as though people were denied Alimta based on their postcode, many sufferers are now finding their access to a workable funded treatment solution is dependant on the approach of their former employer’s insurer.

As lawyers we have attempted to find workable agreements wherever possible with funding insurance companies.  However, many insurers and their solicitors are unwilling to reach agreement. 

The Court has no power to make an order for the payment of future treatment costs and as such Claimants find themselves in the unenviable position of having to adjourn future treatment costs and to recover them at the conclusion of their treatment or after their death.  This also requires them to capitalise such treatments with the damages awarded to them for their pain, suffering and loss of amenity.

Whilst insurers may, in due course, appreciate that their current approach will only serve to increase the amount that they will ultimately pay in such cases (due to the need for sufferers to remain legally represented), we as experienced asbestos solicitors can find solutions. 

Until such time as these new and emerging treatments are made available through the NHS, or until such time as the Courts find a pro-active solution, sufferers will be compelled to bring claims against insurers to recover the costs of these treatments.  Sufferers and their representatives will continue to lobby for reform.

Until such time that this happens, those of us that stood with mesothelioma sufferers whilst they fought for access to first line chemotherapy will continue to stand with them whilst they fight for access to second line treatments.