Professor Jane Davies reflects on the positive news for those affected by cystic fibrosis on both sides of the Atlantic – access to Orkambi on the NHS and FDA Approval of ‘triple combination’ in the US.
Last week marked a milestone for people living with cystic fibrosis (CF) in the UK after NHS England announced that new drugs – Orkambi and Symkevi – will be made available on the NHS after securing a deal with the drug manufacturers, Vertex. After four years of community and patient organisation campaigns, I am delighted with this outcome which will be transformative for young people with CF.
There are over 10,000 people in the UK and over 100,000 worldwide estimated to be living with cystic fibrosis (CF). The condition is caused by a faulty gene encoding for a cell surface ion channel called Cystic Fibrosis Transmembrane Conductance Regulator (CFTR). Ion channels are integral for regulating salt and water transport across mucosal surfaces, particularly in the lungs for defence against infections and in the digestive system. People with CF have a shorter life expectancy than healthy people and a hugely burdensome treatment regime just to keep as well as possible. (more…)
Professor Neil Poulter puts blood pressure screening in the spotlight – an effective way of reducing the burden of high blood pressure in the UK and globally.
Blood pressure screening can save lives, which may come as a surprise considering it is such a simple measurement. Blood Pressure UK was set up as a charity aimed at lowering the nation’s blood pressure (UK), with the purpose of preventing or at least reducing disability and death associated with raised blood pressure (BP). Among their activities, they have been running a ‘Know Your Numbers’ week every year since 2007, and their thirteenth consecutive campaign week is currently underway. ‘Pressure stations’ have been set up around the UK providing free BP screening, encouraging adults across the country to know their blood pressure numbers. (more…)
The Government recently announced plans to create a smoke-free society by 2030 – Dr Nick Hopkinson outlines some of the steps towards achieving this ambition.
Tobacco smoking remains a huge public health issue. Although population smoking rates continue to fall – now down to 14.4% of adults – smoking is still responsible for around 100,000 deaths per year in the UK, and for around half the difference in life expectancy between rich and poor. Smoking rates are high in areas of deprivation, in people with mental health problems and among people who identify as LGBT.
The Government’s recent green paper, Advancing our health: prevention in the 2020’s, although in many areas light on detail, funding, delivery and ambition, does set out some important markers on smoking and some potentially interesting developments around funding tobacco control. (more…)
In celebration of LGBT STEM Day, Dr Akif Khawaja shares the small things everyone can do to make STEM more LGBT-inclusive.
With the glitter of the Mighty Hoopla weekend – a LGBT-friendly pop music festival – having finally settled, all eyes are now set on Pride. For many this will mean another (hopefully sunny) weekend of short shorts, tank tops and daytime drinking. In addition to the parade, especially in London, pride month is chock-a-block of events highlighting all aspects of LGBT+ culture and history. This year, Pride in STEM (Science, Technology, Engineering and Mathematics) has been helping to showcase and support LGBT+ people within the STEM fields by organising LGBT STEM Day.
So, what is Pride in STEM and what is LGBT STEM Day?
Starting with the easy one – Pride in STEM is a charitable trust run by an independent group of LGBT+ scientists and engineers. Founded in 2016, Pride in STEM was the brainchild of Dr Alfredo Carpineti, his husband Chris, and Matt Young. They aim to support all LGBT+ people spanning all of STEM and in doing so, raise their profiles and showcase their work. Now as for LGBT STEM day, this was their latest effort to promote the dissemination of work done by LGBT+ STEM staff. It falls on Friday 5 July 2019 (I’m told purposefully chosen as 507nm is the wavelength of the green stripe in the pride flag – 5.07 … get it?!) and the day before the Pride in London Parade. (more…)
Children’s allergy specialist, Dr Robert Boyle, unpicks the evidence behind the value of allergy tests for children with eczema.
Around one in five children have eczema – and even mild cases can have a big impact on both the child and their family. For many, symptoms will come and go before they start primary school, but for others it can indicate the beginning of a genetic tendency to develop allergic conditions such as hay fever or asthma (or both).
We also know that children with eczema are more likely to develop food allergies, especially if the condition starts in the first few months of life and is severe. Often parents will make the allergy diagnosis themselves – at the sudden onset of vomiting, diarrhoea or rash after eating scrambled egg, for example.
This can be frightening, but doctors can usually easily confirm the cause of these immediate reactions by talking to the parents and offering a confirmatory allergy blood or skin prick test.
In the absence of such obvious physical reactions however, a different question sometimes arises for parents: “Is a food allergy contributing to my child’s eczema and would an allergy test help to find out?” (more…)
Siena Castellon, a 16-year-old award-winning autism advocate, makes the case for why diversity should be expanded to include neurodiversity.
Most universities have embraced diversity. They recognise that having students and faculty with diverse backgrounds, experiences and perspectives leads to increased creativity, innovation and productivity. However, most universities, focus their diversity initiatives on race, ethnicity and gender. Universities also prioritise initiatives that aim to improve social mobility, which is why many of the STEM work placements or summer school programs are only available to students from low-income families. Although it is important to address the under-representation of Black and Minority Ethnic students (BME), women and students from disadvantaged backgrounds, it is just as important to include people who are neurodivergent – a minority group that is often forgotten. (more…)
Many researchers study a particular disease because they have a personal connection to someone who has been affected. For researcher Dr Nicky Whiffin, it happened in reverse.
I had been researching cardiomyopathies (diseases that affect the heart muscle) for a couple of years when my mum suddenly became very ill. Even walking up the stairs was a struggle, she had to pause halfway to catch her breath. Having just been through a very tough patch at work, it was put down to stress. I remember clearly what should have been an amazing trip to Paris in March 2016 to see England’s rugby team win the six nations grand slam – instead the trip was dominated by us all worrying about my mum’s illness. (more…)
Dr Elaine Fuertes provides an insight into the perks of being a postdoc, from international travel to independently developing research with potentially important public health impacts.
“Only a tiny proportion of you will become university professors” – a statistic every postdoctoral researcher has heard, and the vast majority of us choose to ignore. Indeed, despite the increasing awareness and acknowledgement that the large majority of postdocs will end up pursuing one of the many other available career paths open to this highly trained and ambitious workforce, as recently discussed during the 2019 National Heart and Lung Institute Postdoc Day, many of us cling on to what we know to be a highly implausible outcome – landing a tenured position.
I’ve often been asked – why do I do it? Why continue down this career path, one that many of my friends and family see as living in a perpetual state of “student life”. It is indeed a question I have often reflected upon, especially as I am not presently, nor have I ever been, a “die-hard must become a Professor” type of person. So why persevere? What drives me? Why do I continue to be fully inspired and motivated by a career path that entails so much uncertainty? (more…)
Karim Boustani argues the importance of making STEM LGBT-inclusive, from improving visibility to expanding diversity initiatives to include LGBT people.
A large barrier to the creation of an inclusive workplace in science, technology, engineering and mathematics (STEM), in my experience, is the view that being out is regarded as “unprofessional” because it is seen as too “personal”, even though most of our colleagues are “out” as being straight without issue. LGBT people tend to depoliticise themselves in the workplace because there is a commonly held view that discussions about inequality are not regarded as relevant to STEM work. The term “LGBT” will be used in this post to refer to anyone who identifies as lesbian, gay, bisexual, trans or intersex, or who does not conform to society’s expectations in terms of sexual or gender identity and expression.
Katie Stripe gives a personal account of why she wears the rainbow lanyard to make herself visible to others who may need to see gay people doing normal things.
I could start by telling you what I identify as, but I don’t think that is important. The defining features of my character are more about what I am like as a person; sarcastic, grumpy, caring, funny, and what I do; I like to lift heavy weights, play hockey, take photographs, go on holiday and I did my first triathlon at 35 and now I am hooked (or mad). I am also a learning technologist and a learning designer, I build stuff online and develop learning materials and environments for students at Imperial’s National Heart and Lung Institute (NHLI). Having said all that I am writing this because as a gay member of the Imperial community I think it is important that I am visible to people who may need to see gay people doing normal things. (more…)