Dr Laura Waters is an HIV and sexual health consultant at the Mortimer Market Centre and the Boyz Doc. Dr Mags Portman is a sexual health and HIV doctor at the same clinic. Last summer, both women appeared on our ‘PrEParing for battle’ cover. Sadly, Dr Mags has been diagnosed with mesothelioma. Here, Dr Laura explains what the condition is.
Anyone who is a regular Boyz reader will be familiar with the amazing Dr Mags Portman – she’s a sexual health and HIV doctor at the Mortimer Market Centre, where I work too. Mags has been a hugely important advocate and campaigner for HIV pre-exposure prophylaxis (PrEP) and has been instrumental in supporting initiatives such as I Want PrEP Now where you can safely, and legally, buy your own PrEP online.
Sadly life can deal crappy cards and Mags has been diagnosed with mesothelioma. The aim of this column is to explain what the condition is and to make a plea for your help.
Mesothelioma is a type of cancer that mainly affects the lining of the lungs, also called pleura; pleura cover the outside of the lungs and the inside of the rib cage. The main cause of mesothelioma is prior exposure to asbestos. Around 2,600 people are diagnosed with the condition each year, mainly aged 60 to 80 and more in men than women – Mags is not typical by a long way! However, rates in women have risen more over the last decade than in men. The number of people who die from mesothelioma each year is about double the number who die in car accidents.
Asbestos is actually a group of different minerals that were widely used as building materials and insulation. Shipbuilding was the ‘classic’ profession most at risk of asbestos exposure as the material was widely used but anyone living in, working in or working with older buildings might be at risk of exposure.
Use of the most dangerous types of asbestos started declining in the 1970s when the health risks were realised, but was not outlawed until the mid 1980s; a full ban on asbestos didn’t come into place until 1999 following an EU ruling and the law was updated further in 2012. Essentially most work people who work with asbestos must need a specific licence and all require regular medical check ups. Anyone whose work involves disturbing or dismantling buildings built or renovated before 2000 might be exposed (demolition workers, shopfitters, plasterers, cable layers etc). The main risk is when asbestos-containing materials get damaged, allowing the fibres into the air. It’s the job of those who employ people who may get exposed to asbestos to ensure they have the training to recognise asbestos and what to do if they find it.
The UK was slower than some other countries to ban asbestos, which may be why we have one of the highest rates of mesothelioma globally. There have been calls and recommendations to remove all asbestos from UK buildings but this has yet to be enforced and there is debate around capacity to do it and whether dismantling intact buildings might cause more harm than good. There is compensation available, including for people with mesothelioma who cannot trace their disease to a particular employer.
So how does asbestos cause disease? If asbestos gets into the air and is breathed in, the tiny fibres get inside the lung and stay there for a long time causing damage. Typically it’s at least 20 years after exposure to asbestos that symptoms appear. Symptoms of mesothelioma tend to come on gradually and include chest pain, shortness of breath, fever, persistent cough and feeling tired. NHS Choices has a good summary of information.
Sadly the average outlook is not good – the main aim of treatment is to control symptoms and prolong life rather than cure the disease. The main treatment is chemotherapy (using strong drugs to kill the mesothelioma calls) but other options include radiotherapy (killing the cancerous cells with radiation) and surgery. Around half of people diagnosed with mesothelioma will be alive after a year, and 1 in 10 after five years. Although the average survival is poor there are examples of people who have survived with the condition for many years and there are new treatments recently available or still in development. What we are seeing now is a peak of new cases due to the delay between exposure and getting sick – new cases are predicted to start dropping from 2020 to reach much, much lower level by 2050.
Mesothelioma isn’t the only illness linked to asbestos exposure. Around 500 people a year die of asbestosis, a scarring lung condition, and ‘traditional’ lung cancer (that affects the inside rather than outer layer of the lungs) is much more common in people who smoke AND have been exposed to asbestos.
So, back to Mags. There have been several cases where the asbestos exposure was most likely from working in old hospital buildings – basement corridors with asbestos-lagged pipes used by staff are just one example. For someone like Mags, who has dedicated her life to helping others and preventing disease, it seems particularly cruel that the very places she worked to improve the lives of others may have been the source of her cancer. Mags started chemotherapy on 1 March but will be paying for an extra drug that has been recommended to her but is not funded by the NHS – this is why we have started crowdfunding. The extra drug will cost about £1,000 a dose, maybe more, so we are raising as much money as we can to help fund the extra treatment for this extraordinary woman.