LRC urges for action on tick-borne diseases in the wake of Justin Bieber's announcement he has Lyme
Justin Bieber has revealed that he is suffering from Lyme disease (https://www.bbc.co.uk/news/entertainment-arts-51041033).
His announcement comes in the wake of a number of developments that are changing attitudes towards tick-borne diseases in the US. Lyme disease is six times more prevalent than HIV, yet until now the Lyme budget of the US National Institutes of Health (NIH) has been less than 1% that of HIV. But recognition of the devastation Lyme disease and other tick-borne infections cause is starting to result in greater emphasis.
Firstly, major charity research initiatives by the Lyme Disease Association, Bay Area Lyme Foundation, Stand4Lyme Foundation, Steve and Alexandra Cohen Foundation, Global Lyme Alliance and others, have started to bear fruit. For example, a number of drugs have been identified as potentially offering treatment options (https://globallymealliance.org/press-releases/global-lyme-alliance-reveals-several-drugs-drug-combinations-show-success-treating-lyme-disease/). The biggest funders are the Steve and Alexandra Cohen Foundation, which started funding Lyme disease research in 2015 after Alexandra Cohen was afflicted by Lyme disease (http://www.steveandalex.org/focus-areas/lyme-disease/). To date, the Foundation has committed over $50 million for more than 25 Lyme disease projects. Over the next five years, the Foundation will support and track the progress of these grants while selectively seeking out new investment opportunities to combat this complex illness.
Secondly, government action is now giving more hope. It started with the 2016 21st Century Cures Act, which provided for a Tick-borne Disease Working Group that includes both federal health officials and representatives of Lyme patients, doctors who treat them, and advocacy organizations. In December 2019, the Kay Hagan TICK Act, aimed at improving the government’s response to Lyme and other tick-borne diseases, was included in the federal appropriations bill passed by Congress. The TICK Act is named after former Senator Kay Hagan, who died in October due to Powassan virus, a tick-borne infection. It provides $150 million for various activities related to Lyme and other vector-borne diseases. That is a significant boost to the $56 million spent by NIH in 2018, only $23 million of which was devoted to Lyme disease.
However, the situation is very different in the UK and Ireland. The charity Lyme Disease UK runs an online patient support forum for Lyme disease sufferers which has over 10,000 members and yet the extent of the suffering in the UK is not acknowledged. Lyme Resource Centre is a new charity that has been set up with a mission to collaborate with other researchers to combat tick-borne illnesses once funds have been established. However, at present there are no charitable foundations funding research similar to those in the USA, government funding is almost non-existent, and government interest and action is clearly inadequate. Attempts to train the public and doctors are ineffectual, lacking investment, and under-resourced. In fact, a recent Royal College of GPs 'Spotlight' project to train doctors has been shelved after only a few courses have been run.
Tick-borne encephalitis virus and Babesia venatorum were reported as new tick-borne pathogens in the UK in 2019 and more are expected as a result of climate change. There is also a growing realisation that existing pathogens such as Borrelia, the bacteria which causes Lyme disease, are more prevalent than previously thought. Researchers predict that, by 2050, 35% of the global population will be infected with a tick-borne disease.
And yet, while the USA is finally acknowledging the extent of the epidemic, within the UK and Ireland, efforts have been made to downplay the extent of tick-borne infections. Instead, what is urgently needed is much expanded education and training, research funding, and a concerted government action plan for tackling tick-borne diseases.