Market leaders: PM Society Digital Awards

by J Pinching 17. October 2017 09:47

 

Pharma marketing has at last embraced digital.

Although it was the eighth PM Society Digital Awards, this occasion seemed to score its signature in the virtual sand more emphatically than ever before.

For so long our industry has been a polite bystander, as the rest of the universe leapt on the digital super-highway, but in recent years pharma has seized the zeitgeist and invited it to stay on a long-term basis.

Fortunately, PM Society’s Rachel Farrow recognised that this era would come, and created an occasion that specifically celebrated digital wizardry in the brave new pharma marketing world.

Thus, the great, the good and the edgy convened at The Brewery, in London. Not least comedian Russell Kane whose observations of the British character and its relationship with alcohol were chillingly familiar, as the raucous laughter would testify.

As the awards were distributed by Russell and the disembodied tones of Lotto legend, Alan Dedicoat, we witnessed the sizzling innovation, stunning visuals, incredible apps and inspiring patient engagement that has dragged pharma kicking and screaming into the 21st Century.

Jamie Thompson, Associate Creative Director at Saatchi & Saatchi Wellness, reflected on his team’s victory in the Agency Self-Promotion category: “The rebrand involved the whole agency. And to win for something so personal to our people and their feelings is truly special.

“We believe that empathy leads to creativity. That’s why we created the first ever corporate identity that responds to feelings. We captured the emotions of our people using EEG headsets and a bespoke algorithm that turned emotional data into unique individual emoscapes,” he added.

Kosha Vyas, Account Manager at The EarthWorks, which scooped the Healthcare Partnerships title, said: “Our strategy, to be an agency exclusively focused on patient engagement, continues to reap rewards for the patients who benefit from the tailored solutions we develop in partnership with our clients.

“As we have seen from winning this award, our end-to-end capabilities, from strategic consultancy and research, to the development of world-leading health technology, allows us to provide real world value to patients and their HCPs.”  

 

Digital love

Winners from 2017 PM Society Digital Awards

 

Promotional programmes 

Oi Ltd, The Bayer IMCM Lighthouse Project

 

HCP education & support

The Health Hive Group, VR simulation training experience

 

Healthcare partnerships

The EarthWorks, My PAH

 

Patient initiatives

90TEN, Prime – Making HIV history

 

Market access

RFA Advertising & Marketing, Noxafil budget impact model

 

Congress/Meetings

ebee Health, ERS – GSK respiratory

 

Multichannel campaign

90TEN, Prime – Making HIV history

 

Corporate communications

Sandoz International, Sandoz HACk – Healthcare Access Challenge

 

Agency self-promotion

Saatchi & Saatchi Wellness, Saatchi & Saatchi Wellness Rebrand

 

Film

Health Unlimited, Small steps – COPD life is calling

 

Animation

HealthCircle Advertising, It’s hard to see when CAC starts

 

Innovation: New Technology

The Health Hive Group Ltd, VR simulation training experience

 

Innovation: Novel Thinking 

Sudler Milan, Escape Room

 

Inspiration award 

Health iQ, Ground-breaking approach to MPS1

The EarthWorks, MyAsthma app

 

Digital Account Manager 

Doctors.net (Alice Carter)

 

Digital Team

Four Health Media

 

 

 

 

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Features

UK’s biggest killer needs attention

by Amy Schofield 16. October 2017 11:22

 

 

Pathway to promise

It’s international Breast Cancer Awareness Month and the UK’s biggest killer needs attention. 

 

Breast cancer has been the most common cancer in the UK since 1997*, and 1 in 8 women in the UK will develop breast cancer in their lifetime. During Breast Cancer Awareness Month, around 5000 people will be diagnosed with the disease, with one person diagnosed every 10 minutes.

Things are improving, however – in the UK, breast cancer survival has doubled in the last 40 years, while almost 9 in 10 women survive breast cancer for five years or more. Despite this, around 11,400 people die from breast cancer in the UK every year.

 

Treatment developments

Novartis: At the time of going to press, Novartis was waiting for NICE’s decision on whether Kisqali (ribociclib) will be funded by the NHS. Following the drug’s authorisation from the European Commission in August for the treatment of advanced breast cancer, ribociclib is now licensed for use in Europe as a first-line treatment in combination with an aromatase inhibitor in postmenopausal women with hormone receptor positive, human epidermal growth factor receptor-2 negative (HR+/HER2-) locally advanced or metastatic breast cancer.

Roche: After suffering the setback of provisional rejection by NICE in December 2016, Roche’s Kadcyla (trastuzumab emtansine) was the subject of what was dubbed a ‘monumental U-turn’ by the media earlier this year, as the manufacturer agreed a deal with NHS England to make the drug available to around 1200 women per year with advanced aggressive cancer.

Pfizer: In February this year, NICE made the provisional decision that Ibrance (palbociclib) should not be routinely funded on the NHS in England. Its final appraisal was paused for Pfizer to present further clinical data.

Then in May, Pfizer made the unexpected announcement that it would give out palbociclib for free until NICE makes its decision on whether it should be available on the NHS. At the time of going to press, palbociclib was still being given to women with incurable metastatic breast cancer at no cost.

AstraZeneca: Promising trial results for the PARP inhibitor Lynparza (olaparib) were recently revealed. Results from the Phase III OlympiAD trial found a 42% reduction in the risk of the disease spreading in patients taking Lynparza, compared to those undergoing chemotherapy.

 

Expert view

Professor Arnie Purushotham, Cancer Research UK’s senior clinical adviser

 

Recent technological developments have enabled the study of cancer’s molecular and genetic characteristics in unprecedented detail, shifting the view of breast cancer as, not one disease, but a collection of unique diseases with their own challenges. This has ushered in a wave of exciting research into tailoring treatments to each person’s individual cancer, so patients get treatments that are right for their disease.

Coupled with this progress has been finding less invasive techniques to take a detailed snapshot of each person’s tumour, which could help guide therapeutic decisions. Liquid biopsies, blood tests that fish out fragments of tumours for analysis, are increasingly occupying this role. In the future, these innovative methods may have a role in diagnosing the disease earlier.

But just as it’s crucial to ensure patients get treatments that are best for them, it’s essential to prevent harm from giving people treatments that they don’t need. One of Cancer Research UK’s Grand Challenges seeks to address this issue by determining how to distinguish between those who do need treatment and those who don’t in women with a condition called ductal carcinoma in situ (DCIS), which can sometimes develop into breast cancer. This work could spare thousands of women unnecessary treatment.

 

 

Does it add up?

Breast Cancer UK’s ‘You Do the Maths’ campaign shines a light on the relatively small amounts currently spent on understanding and preventing the causes of cancers, and asks whether more can be invested to help prevent breast cancer.

• 75% of breast cancer cases thought to be attributable to environmental and lifestyle causes

• 1% of research funding spent on environmental and lifestyle causes of cancer in 2014

• It is estimated that 20-30% of cases are due to genetic mutations. Of these, 2-3% are associated with BRCA mutations

• £51m is the estimated annual cost savings if the incidence rate for breast cancer was reduced by 10%.

 

 

Personal story

Katy English, 24

 

“It looks like you’ve got cancer,” said the registrar, without warning, or sensitivity. I instantly went numb and completely shut down. My mum, panicking, asked questions: “How are you going to treat it, you’ll be able to sort it out won’t you?” “What, you want me to go through all the treatment options now?” he said with disdain.

We were led away by a breast care nurse, who came to be an invaluable guide throughout. Luckily that first registrar was the only detestable character who played a part in my care; the oncologist, surgeon, chemo nurses and breast care nurses (all women) were outstanding.

At 24-years-old, being told I had cancer was unbelievable, devastating, horrifying. Until then I was a ‘normal’ twenty-something; recently graduated, proud to have moved out of my parents and in with my boyfriend and best friends from school, and even prouder to have just been offered a place to start a PGCE.

I hadn’t been worried when I felt a lump in my breast, they often felt a bit lumpy or bumpy at different times of the month, but I made a doctor’s appointment when I noticed the bottom of one breast looked flatter than the other when I raised my arms. The GP immediately referred me for tests. That was when my whole world turned upside down.

They decided that as the lump was large and my lymph nodes tested positive, I would have six rounds of chemo, to hopefully shrink the lump before surgery to lose less of the breast. Chemo was hard. My family and boyfriend were by my side through everything, I couldn’t have done it without their infinite love and patience.

I wanted a double mastectomy and my surgeon and I both had to appeal for it to be approved, after initially being rejected, but it went ahead on the 22nd of December. I was discharged on Christmas Eve.

I then had three weeks of radiotherapy every day, and now I have to take oestrogen blocking tablets for 10 years, which give me hot flushes and achy joints and muscles, but I have gradually regained energy.

I recently swam 25km in a month and raised £3500 for Bart’s Charity Breast Cancer Research Fund, and I am due to start my PGCE. The last year has been an enormous challenge, but I feel stronger than ever and pray that it never comes back.

 

 

Making an impact

What difference have breast cancer campaigns made?

 

Race for Life

Over the past 20 years, over 8 million women have taken part in Cancer Research UK’s events, from 5k runs to muddy obstacle courses, raising over £547 million to fund research.

 

Wear it pink day

Rock a pink cowboy hat in the boardroom, wear a pink feather boa to walk the dog – it doesn’t matter, as long as you do it in support of Breast Cancer Now on Friday 20 October. The campaign has raised £30.1 million to date for breast cancer research.

 

Coppafeel!

In a mission to educate us that young people get breast cancer too, the charity, headed by the inspirational Kris Hallenga, has launched many campaigns encouraging women (and men) under 30 to regularly check their boobs. These include Check ‘em Tuesday, the Bra Hijack, the Coppafeel! Boob Tour, and #GetItOffYourChest. Read Kris’s remarkable story on p18.

 

 

Men get breast cancer too

Breast cancer is not an exclusively female disease – although it is rare, male breast cancer accounts for 1 in every 100,000 males. According to Cancer Research UK, data shows that male breast cancer mortality is strongly related to age, with the highest mortality rates being in older males. In the UK in 2012-2014, on average each year around 6 in 10 (55%) of deaths were in males aged 75 and over.     

 

If you are concerned about breast cancer, need advice or would like to talk to someone, call 0808 800 6000 or go to breastcancercare.org.uk

 

 

 

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Features

Opposites attract: Pharma & the third sector

by John Pinching 9. October 2017 09:38

 

People generally see industry and specific disease charities as being poles apart; strategically, motivationally and even ethically. 

In reality, common denominators between the two apparently alien factions are manifest. Indeed, even their differences; industry’s expertise in development and manufacturing, in contrast to the skills charities possess in the arena of awareness-raising and patient engagement, make them compelling allies, rather than foreign entities.

Evidence of this co-existence and cooperation comes in the form of several dynamic pharma-charity partnerships. Here are some of the most impressive.

 

Big-C hitters

Dr Nigel Blackburn, Cancer Research UK’s Director of Drug Development

 

Cancer Research UK’s record of developing novel treatments is comparable to any pharmaceutical company.

Industry partnerships have proved hugely valuable in achieving this; they enable us to translate our world-class research into effective treatments for patients.

Commercial partnerships are at the heart of how we interact with industry. Our team works with pharmaceutical companies, who bring the skills, materials and funding necessary to convert promising scientific discoveries into industrial propositions.

Through Cancer Research UK’s Therapeutic Discovery Laboratory, we bring together the best minds in academic cancer research, with the drive of industry. Multi-project alliances include partnerships with AstraZeneca, Merck and Forma.

Our Centre for Drug Development (CDD) has taken over 120 potential cancer drugs into clinical trials and six have made it to market, with others in development. Through our Clinical Development Partnerships scheme, the centre works with leading pharma companies, on a shared ‘risk-reward’ basis, giving promising new drugs the best chance of making it.

Once clinical data is gathered, companies retain intellectual property rights, or transfer them to Cancer Research UK for a share of revenues.

Thanks to our network of Experimental Cancer Medicine Centres we have the specialist infrastructure to bring innovative treatments to patients through clinical trials. The Combinations Alliance is a unique scheme, run through these centres, where we test novel drug combinations using assets from different companies, with a view to improving standard treatments.

Cancer Research UK’s industry interactions have been proven to benefit patients. The first PARP inhibitor, rucaparib (Rubraca), was discovered by our scientists at the Northern Institute for Cancer Research, in collaboration with Agouron and Pfizer. With the help of the CDD, rucaparib entered trials and stimulated interest in PARP inhibitors from other companies. Last year, in the US, the drug was designated a ‘breakthrough therapy’ by the FDA, for patients with advanced ovarian cancer.

We will continue to work closely with industry to accelerate the development of potentially life-saving treatments and beat cancer sooner. Go to cancerresearchuk.org

 

 

Heart strings

Professor Jeremy Pearson, Associate Medical Director at the British Heart Foundation

 

The British Heart Foundation’s (BHF) vision is a world where people do not suffer or die prematurely from heart disease.

A crucial objective of our strategy is to enhance the translation of cardiovascular research into improved patient care. This goal requires strong relationships; academics can bring scientific know-how and years of experience, while pharma provides drug development and commercial expertise, including access to compound libraries and regulatory advice.

To achieve its mission, the BHF funds academic-led projects that involve pharma, where there is clear potential for patient benefit. For example, The Heart Protection Study, led by the University of Oxford, was jointly funded by the BHF, Medical Research Council, Merck and Roche Vitamins Ltd.

This was a 20,000-patient study that showed the benefits of simvastatin in lowering cholesterol, ultimately leading to a reduction in coronary heart disease risk. We have a clear policy outlining the terms of these collaborations, ensuring that universities have intellectual property rights and that if findings result in commercial success, the university and BHF are recognised. This allows revenue to be re-invested into research.

The BHF has a dedicated funding scheme to accelerate the translation of cardiovascular research. The Translational Award provides funding to de-risk promising innovations, enabling them to secure further investment. The committee assessing opportunities has a range of members with differing backgrounds including medicinal chemistry, drug development and venture capital investment expertise.

They help academics translate their work and attract pharma interest by providing advice, identifying commercial hurdles and shaping project design.

The BHF takes an active role in connecting academics with pharma to further stimulate knowledge exchange. Last year, we held a workshop which included speakers from pharma, investment and regulatory organisations, allowing academics to discover exactly what experts look for when assessing potential projects.

Pharma is keen to learn from academia and we play a role in initiating university visits where industry can find out about specific projects and form mutually beneficial collaborations. Go to bhf.org.uk   

 

 

Breathing space

Jason Cater, Director of Fundraising at the British Lung Foundation

 

A positive, lasting impact on the lives of respiratory patients is an essential shared value for any pharmaceutical partnering with the British Lung Foundation. The relationship must be grounded in the charity’s goals of improving the lives of people living with or affected by a lung condition.

An example of such a partnership is a project calling for improved access to treatment for idiopathic pulmonary fibrosis (IPF) patients.

IPF is a condition that causes continuous scarring of the lungs. The scar tissue stops the lungs doing their job of drawing oxygen from the air and passing it into the blood. For those living with the condition, it means breathing gets increasingly difficult. IPF has no known cure or cause, and affects adults of all ages.

Roche was one of two pharmaceutical companies that funded the dissemination of a report by the charity, which made recommendations to improve outcomes for IPF patients. These included establishing the Taskforce for Lung Health in order to produce a five-year strategy for tackling lung disease and improving access to personalised treatments, diagnosis and support.

The project held a half-day seminar with patients, carers and healthcare professionals, to hear directly what they thought the issues are and what, in an ideal world, the care pathway for IPF should look like. This helped identify key principles for good IPF care, including being centred on the patient and their wishes, making all possible treatment options available and ensuring people in all parts of the country access the same standards of care.

The British Lung Foundation then carried out its own research, identifying areas of best practice and finding policy solutions, which would lead to the changes patients want to see.

Roche and other pharmaceutical expertise was essential to the project and its aims.
Go to blf.org.uk

 

 

Force is strong

Professor David Dexter, Deputy Director of Research at Parkinson’s UK

 

Throughout my years of working in Parkinson’s research, a major barrier to the development of new drugs has been the design of clinical trials. Trials are also, of course, an essential part of discovering safe treatments and, ultimately, a cure for the condition.

The most commonly used drug for Parkinson’s, Sinemet, was developed more than 50 years ago. People with Parkinson’s have waited long enough for better treatments, so Parkinson’s UK decided to make clinical trials smarter and faster.

In 2015, we took the bold step of founding the Critical Path for Parkinson’s (CPP) Consortium, in partnership with the Critical Path Institute. Nine major pharmaceutical companies joined the project in its first year, alongside government agencies, academic organisations and other Parkinson’s charities.

Through the consortium, these members work together to garner support from global regulatory agencies for new ways of designing and carrying out clinical trials. Using clinical data from around 8000 people, recently diagnosed with Parkinson’s, the CPP Consortium developed a clinical trials simulation platform.

Clinicians can use the platform to determine the optimum length and size of a trial, as well as predicting the likelihood of success. This will lead to more efficiently designed trials, cutting the cost of drug development – historically, a huge obstacle to making progress.

One of the CPP Consortium’s biggest achievements was in 2016 when the European Medicines Agency issued a public letter of support, backing our campaign for the use of a brain scan that identifies the loss of dopamine brain cells, a symptom of Parkinson’s. This can be used as a selection tool to identify Parkinson’s patients more accurately, ensuring we have the most suitable participants for trials.

 

 

 

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Features

Kris Hallenga used her experience to change the world forever

by John Pinching 9. October 2017 09:25

 

Girl power: When her life changed dramatically Kris Hallenga used her experience to change the world forever.

 

Kris discovered she had breast cancer when she was only 22. Through her pioneering campaign charity CoppaFeel! she has brought confidence, hope and inspiration to countless people across the world. She epitomises the modern patient and, following her own challenging prognosis, has given others the strength to take control. I had the pleasure of chatting to her and this is her remarkable story.

 

What initiatives is CoppaFeel! driving this summer?

It’s funny you should mention driving, we have a big van called Belinda, the ‘boob-mobile’, which goes around festivals. It’s a brilliant education hub, where we give young people temporary tattoos and, as our volunteers are applying them, open up a conversation about boob health. We can also get a bit of data, and they can spread info about breast cancer and CoppaFeel! across social media. We’ve been doing this for years, but it is the first time we’ve had our own vehicle, which is really cool. Those five-minute conversations we’re having in a field are potentially life-saving.

 

Uniquely, the CoppaFeel! website takes something very serious and approaches it in a fun way.

It helps that a bunch of young people started it – we knew how we wanted to be spoken to. Although I am 31 now, I am surrounded by students in the office, so I appreciate the vibe among teenagers and people in their twenties. When we first went into schools we were surprised by how much kids wanted to know. Most people have had an experience, in their family or social group, of cancer. They’re resilient and up for learning new things.

 

You’ve also got some familiar faces on your website.

It’s great to have celebrity endorsements from the likes of Dermot O’Leary and Fearne Cotton, but we’re now moving towards online influencers and ‘youtubers’. Although many of us have not heard of them, young people are watching their output day in, day out.

 

Your messages seem to be about handing control back to patients.

We should never entirely rely on other people when it comes to our own health. Even if our healthcare providers picked up every cancer, we still need to know our own bodies. After my experience, it seems absurd that you would rock up to a GP, let them examine you once and accept the verdict. Knowing your own body and when you need to act on something, gives you a sense of control which is very empowering. If you confidently say that, after 10 years of checking, there is something different about your boobs, they have to refer you.

 

What had your experience with HCPs been?

I was let down badly by two GPs, but had I known myself that the changes happening to my boobs were bad, things could have been very different. People ask me why I didn’t sue, but getting two GPs struck off wasn’t going to make a massive impact. Educating people and promoting better conversations about breast cancer with GPs could. Ultimately, the GPs that ignored my symptoms would have seen my story in the press and I like to think they would not make the same mistakes again.

 

How did you get through the initial period after diagnosis?

I started immediately with a secondary diagnosis and, knowing that it was a disease I was unlikely to get rid of, had to navigate my own route through it. There were days when I was crying a lot, but I had a treatment plan and was focussed on getting better. Waiting to see the impact of my first treatment was most difficult.

 

When did you regroup and decide to do something positive?

Two months after my diagnosis and 10 days before my hair fell out, I was at my mum’s house with some friends and my sisters. I told them there wasn’t really any provision for young people to find out about breast cancer, and asked if they wanted to help me create something. Despite not having any experience they all wanted to give their time.

 

How quickly did you realise you had a hit?

During the first festival we went to, we were positioned beside the mainstage. It was all very amateur; just a gazebo and some stickers! I was going through chemo and injecting myself to ensure my white blood cells were at an acceptable level. We just blagged it, by painting people’s faces, as an excuse to talk about boobs. The tent was full the entire time and we realised right then that if we could convince students, we could be on to something. Following that I had my mastectomy, we got charity status and I won a Pride of Britain Award.

 

What treatments have you been on?

I’m on palbociclib, which was developed by Pfizer, and is doing wonders at the moment. I’m also taking exemestane, the hormone blockers, and monthly injections of denosumab. This is another example of taking control. Oncologists don’t know everything and I did my own research about which drugs were right for me.

 

Is there life before and after cancer diagnosis?

I had been living in Beijing and found out my diagnosis when I returned home for Christmas. When I think about the girl before cancer, I was very different. I was 22, didn’t really have a clue about life and had been through a couple of bad relationships. I wasn’t sure what my purpose was but, oddly enough, when I found out I had cancer, the purpose became clear.

 

What are your plans now?

Somehow eight years have passed since I started CoppaFeel!. At the beginning of last year, I took a step back from being CEO. I stay involved in the campaigns and continue doing the things I love, but now I also have a life in Cornwall.

 

Thoroughly deserved. What is your perfect day?

Discovering a new café that does a delicious brunch, and paddle-boarding on a calm lake.

 

Naturally. What hit record says most about you?

‘Power’ by Little Mix.

 

I’ll check them out. Goodbye Kris.

Bye John.

 

Go to coppafeel.org  

 

 

 

 

 

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Features

NICE: recommendations and rejections report

by Amy Schofield 5. October 2017 09:50

 

 

How do medicines make it to market and what is NICE’s role in the process?

  

Technology appraisals: Where potential can flourish

Technology appraisals are recommendations by NICE on the use of new and existing medicines and treatments within the NHS. They are either:

• Single technology appraisal (STA): Used to assess new technologies; a single drug or treatment, usually new pharmaceutical products or license extensions for existing products. NICE also uses STA for reviews of some published appraisals. This process enables NICE to produce guidance soon after the technology is introduced in the UK.

• Multiple technology appraisal (MTA): Used to assess several drugs or treatments for one condition.

• Fast track appraisal (FTA): In April this year, the FTA process was introduced to speed up access to the most cost-effective new treatments.

Appraisals assess medicines, medical devices, diagnostic techniques, surgical procedures and health promotion activities.

 

NICE bases its recommendations on a review of clinical and economic evidence. Clinical evidence shows how well the medicine or treatment works and economic evidence demonstrates how well the medicine or treatment works in relation to how much it costs the NHS, and whether it represents value for money. Each appraisal can receive one or more recommendation, and can comprise more than one type of recommendation.

 

 

Decisions decisions

NICE has five decision types:

 

Recommended

The drug or treatment is recommended for use:

• In line with marketing authorisation from the European Medicines Agency (EMA) or Medicines and Healthcare Products Regulatory Agency (MHRA), or

• In line with how it is used in clinical practice in the NHS (or both).

 

 Optimised

The technology is recommended for a smaller subset of patients than originally stated by the marketing authorisation.

 

Only in research

The drug or treatment is recommended for use only in the context of a research study, for example a clinical trial. This sometimes happens for new technologies when there isn’t yet enough clinical evidence to make a recommendation for use in the NHS.

 

Not recommended

The treatment is not recommended when there is a lack of evidence for the clinical effectiveness of the technology, or if it’s not considered to be a cost-effective use of NHS resources compared with current NHS practice.

 

Recommended for use in the CDF

If there is early evidence that a drug has clinical benefits for cancer patients, but still needs more evidence to prove its cost effectiveness, then it can be recommended for use within the Cancer Drugs Fund, which means that new cancer drugs can be made available to patients much more quickly than before. Source: nice.org.uk

 

Making it to market

In Europe the European Medicines Agency (EMA) carries out the role of granting marketing authorisations, which allow the manufacturer to sell and promote the new medicine for the indication(s) that the regulatory agencies have assessed and approved.

Many UK assessments are carried out by the Medicines and Healthcare Products Regulatory Agency (MHRA). Each medicine is assessed to determine if it does what it claims to do. In addition, judgement is made on ‘benefit to harm’ balance.

 

Adcetris (brentuximab vedotin)

At the end of August 2017, Takeda’s Adcetris was recommended as an option to treat systemic anaplastic large cell lymphoma (sALCL), a very rare and aggressive cancer of the lymphatic system, on the NHS in England and Wales.

In June this year NICE decided not to recommend routine funding for the drug, asking Takeda for a revised cost-effectiveness analysis. The drug has been available on the NHS in England via the CDF since April 2013.

The final appraisal, however, recommended Adcetris as an option for treating relapsed or refractory sALCL, but only if patients have an Eastern Cooperative Oncology Group (ECOG) performance status of 0 or 1, and the company provides the drug as per the terms of a commercial access agreement with NHS England.

Although “pleased” with NICE’s decision, Takeda professed to be “disappointed” with the restriction. Adam Zaeske, Takeda UK General Manager, said at the time: “It is disappointing that NICE has added a last minute ECOG restriction that could result in a small number of patients no longer having access to the medicine and being left with limited options.”

 

Nexavar (sorafenib)

NICE recommended Bayer’s sorafenib for use on NHS England for the treatment of patients with advanced hepatocellular carcinoma (HCC) who have a Child-Pugh grade A liver impairment and have failed or are unsuitable for surgical or loco-regional therapies.

Bayer agreed a commercial access agreement with NHS England that provides the drug – the only approved pharmacological option for patients with HCC – at an undisclosed discounted price. 

Sorafenib works by stopping the proteins on the surface of cells, inhibiting tumour growth. It is estimated that it extends life by at least three months.

Previously, treatments for patients with advanced liver cancer were limited. Andrew Langford, Chief Executive of the British Liver Trust, said at the time: “Evidence shows that outcomes for people with advanced liver cancer are particularly poor, so any increase in length of life is very important.”

 

Case study: Volte face

The decision not to recommend a drug or treatment need not spell the end of hope for patients in need of it. In June 2017, NICE performed a U-turn that was welcomed by breast cancer sufferers, patient groups, charities and clinicians, as the regulator reversed its provisional decision not to recommend Roche’s Kadcyla® (trastuzumab emtansine) for incurable HER2-positive advanced breast cancer in England.

The positive decision followed a four-year campaign to secure routine access to Kadcyla, a treatment already available for access in Scotland and 15 other European countries. The decision reversed the previous draft guidance issued in December 2016, which rejected Kadcyla’s use on the NHS in England. Close collaboration between Roche, NHS England and NICE resulted in NICE recommending Kadcyla as a cost effective treatment. The decision is expected to benefit nearly 1000 women across the UK each year.

In the pivotal EMILIA study on 991 women, Kadcyla was shown to increase the median overall survival in women with advanced HER2–positive breast cancer, previously treated with Herceptin and a taxane, by 5.8 months compared with lapatinib and capecitabine.

In response to the positive decision, Dr Andreas Makris, Consultant Clinical Oncologist, Mount Vernon Cancer Centre, Middlesex, commented: “Kadcyla is an important treatment option, able to extend life for an average of six months, giving women the invaluable time to spend with their loved ones that they deserve.”

Richard Erwin, General Manager of Roche, called it, “a positive example of how solutions can be reached when all parties show flexibility”.

 

Industry insider view: James Read

Director, Policy & Communications External Affairs, MSD UK

 

MSD has achieved a number of successful recommendations from NICE in recent years, including a series of cancer indications for pembrolizumab. Industry and NICE, however, will need to overcome some important challenges if we are to ensure that UK patients can promptly access new medicines that might be able to help them.

The Government’s recently published Life Sciences Industrial Strategy recognises many of the issues and proposes that new medicines be appraised through a single, value-led process, managed by NICE. It will include opportunities for a range of flexible funding and reimbursement vehicles, alongside the ‘NHS Adoption Plan’ for the individual medicine.

In the coming years, companies will be seeking many more recommendations for innovative medicines. That will include a range of treatments across many different cancers often in combination with other therapies, supported by a wide variety of clinical evidence. We are confident that together we will find ways to make sure patients can access important new treatments, helping the NHS to keep advancing outcomes for people affected by serious illness across the UK.  

 

 

Winners & Losers 

Recommended

Name: Ibrutinib aloneFor: Previously treated chronic lymphocytic leukaemia and untreated chronic lymphocytic leukaemia with 17p deletion or TP53 mutation. 

Name: Pomalidomide, in combination with low‑dose dexamethasone  For: Multiple myeloma previously treated with lenalidomide and bortezomib.

Name: EverolimusFor: Advanced renal cell carcinoma after previous treatment.

 

Not recommended

Name: Pegylated liposomal irinotecan in combination with 5‑fluorouracil and leucovorin For: Pancreatic cancer after gemcitabine.

Name: High-dose imatinib For: Treating imatinib-resistant or intolerant chronic myeloid leukaemia.  

 

 

 

 

 

Does being tall increase your risk of prostate cancer?

by Amy Schofield 2. October 2017 12:07

 

 

Don’t believe the hype: health headlines dissected

 

THE STORY

Around one in eight men will get prostate cancer at some point in their lives. As with any disease it has certain risk factors, but recently the British press reported that being tall could make men more likely to die from prostate cancer.

A large study by researchers at Oxford University investigating the association between height and being overweight was behind the reports, but what’s the truth behind the headlines?

 

THE RESEARCH

Researchers at Oxford University investigated the association of height and adiposity (severe or morbid overweight) with incidence of, and death from, prostate cancer in 141,896 men in the European Prospective Investigation into Cancer and Nutrition (EPIC) cohort.

The team found that the risk of high-grade disease and death from prostate cancer increased by 21% and 17% respectively with every additional 10cm (3.9 inches) of height.

 

THE RESULTS

Despite the headlines, aimed at scaring any men over 5 feet 11, the results showed that height alone was not associated with total prostate cancer risk.

Of the men, 932 died from prostate cancer overall. This total includes 159 of the shortest men (under 5 feet 6 inches tall) and 227 of the tallest men (over 5 feet 11 inches tall).

What the study did show is that the risk of aggressive forms of the disease and death ‘increased by 21% and 17% respectively, with every 10cm increment in height’, but those men also had ‘greater adiposity’.

“The findings show that men who are taller and have greater adiposity have an elevated risk of high-grade prostate cancer and prostate cancer death,” concluded the researchers.

 

THE DEAL

The study found that increased height was not associated with overall risk of contracting prostate cancer, but only with aggressive forms, and researchers stressed that height alone was not associated with overall prostate cancer risk.

Lead researcher, Dr Aurora Pérez-Cornago from Oxford University, said: “The finding of high-risk in taller men may provide insights into the mechanisms underlying prostate cancer development. For example, related to early nutrition and growth.

“We also found that a healthy body weight is associated with a reduced risk of high-grade prostate cancer and death from prostate cancer years later.”

Prostate Cancer UK pointed out that the incidence of taller, obese men contracting the aggressive forms of the disease was not as high as papers stated: ‘The increased absolute risk of dying from prostate cancer for the tallest men in the study was only approximately 0.28 per cent’.

Prostate Cancer UK’s Deputy Director of Research, Dr Matt Hobbs, added that the study’s usefulness lies in finding out why the disease develops: “It might provide pointers to help uncover certain genetic markers and early developmental processes which hold significance.”

 

What the press said:

“Boys, your height could predict if you’ll die from prostate cancer” thesun.co.uk

“Tall men at greater risk of death from prostate cancer” telegraph.co.uk

 

 

 

 

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Features

Have STI awareness drives reduced risky sexual behaviour?

by John Pinching 25. September 2017 10:23

 

After the STI awareness drives of the 90s are we less drawn to risky sexual behaviour and more willing to get tested?

 

Sexually transmitted infections (STIs) always take the award for ‘most embarrassing condition’.

The socially awkward nature of STIs has resulted in campaigners, charities and governments being compelled to use awareness-raising campaigns that shock, entertain or inform in increasingly innovative ways.

It is also an area in which pharma is compelled, not just to keep the disease landscape in sharp focus, but to examine how society changes, shifts and moves with the times.

Here, experts from across the sexual health landscape share their thoughts on where we are with STIs and sexual health, and where we should be in the future.

 

Studying behaviour

Dr Helen Webberley, GP, sexual health expert and runs mywebdoctor.co.uk

 

The 1960s brought sexual liberation and effective methods of non-barrier contraception, but this had unintended consequences and by the 1980s sexually transmitted infections were front-page news.

Once we began to understand the range and threat of infections that could be passed on sexually, many people took stock of the risks. The more cautious chose to adopt a ‘double dutch’ approach – taking one method of contraception for preventing pregnancy and another for preventing infections.

The extent to which fear, and the risks involved, actually changed habits of sexual activity is largely unknown. What we have seen, however, is a marked increase in the acceptability of getting tested – both among healthcare professionals and patients. You can now have a full STI check done at your local GP surgery using a simple urine and blood test.

You can also buy discreet home-testing kits for those who would rather keep it private. Many youngsters go hand-in-hand to the genitourinary medicine (GUM) clinics for their check-ups and proudly show the results that appear on their smart phone to mates and prospective partners. GUM clinics have joined with contraception services to form united, open and friendly one-stop shops for improved sexual health.

Sexually transmitted infections do still pose a real threat, however. We are seeing strains of gonorrhoea that are resistant to antibiotics, and the re-emergence of syphilis. Despite effective treatments for HIV, it is still a life-altering threat to both heterosexual and homosexual couples, and will continue to be so while the promise of bare sex continues to be considered a ‘treat’.

Once contracted, genital wart and herpes viruses stay permanently, emerging as unsightly sores or lumps, while infections like chlamydia go unnoticed until the damage to the host’s fallopian tubes are revealed.

So, while sexual habits continue to be free and easy, even though we have new treatments becoming available, those who see the damage still concur that prevention is better than cure. Prevent the infection from getting into your body, rather than celebrate the negative results from your last trip to the GUM clinic, as next time you may not get the all clear. 

 

Picture of health

Cary James, Head of Health Improvement at Terrence Higgins Trust

 

This year marks 100 years since the Venereal Diseases Act was passed by Parliament, marking the beginning of free, confidential and professional sexual health services in the UK.

Since then, vast strides have been made to ensure people can enjoy good sexual health, including the latex condom and oral contraceptive pill. But we have faced challenges, most notably the AIDS crisis.

Sexual health and HIV campaigns have changed vastly since those days. Back then, the Government’s AIDS campaign, famous for its imagery of tombstones engraved with the words ‘AIDS: Don’t die of ignorance’, was not to everyone’s tastes, and has, with hindsight, left a legacy of stigma, because there hasn’t been anything since to update people’s knowledge. But it did save lives.

Medical advances in HIV treatment now mean the virus doesn’t have to stand in the way of living a long and healthy life. But we cannot underestimate the impact of stigma. It stops people getting tested, because they fear reaction from friends and family if they are diagnosed, and this means there are thousands of people living with HIV who don’t know and could unwittingly pass on the virus.

To help combat this, we use empowering messages in our prevention campaigns because they work better than scaring tactics – our messages are about celebrating individuals who are taking small but powerful actions to stop HIV and enjoy good sexual health.

And these are working. This year we’ve seen the first ever drop in new HIV diagnoses in gay and bisexual men. We still have much to do, however, in addressing the nation’s poor sexual health.

STIs have dropped by 4%, but are still unacceptably high. Some STIs are still increasing; in 2016 we saw the highest rates of syphilis since 1949. There are still particular communities that are bearing the brunt of poor sexual health. Young people, black and ethnic minority communities, people living with HIV, and gay and bisexual men continue to be disproportionately affected by STIs. This is not acceptable; good sexual health should be a reality for everyone.

From 2019, relationships and sex education will be mandatory in all schools, which gives us a huge opportunity to tackle STIs in young people. For this to have an effect, however, it must include information about STI testing, LGBT sexual health and confidence in negotiating condom use – not just heterosexual sex and reproduction.

We need the government to fully fund sexual health services and make prevention, including HIV and STI testing and sexual health information, as simple and accessible as possible, wherever you live in the country.

It is essential that Public Health England, the Department of Health and local authorities ensure improved access to effective STI and HIV testing, treatment and prevention services. Only then can we achieve our vision to end the HIV epidemic, and promote good sexual health.

The Terrence Higgins Trust is currently running two compelling campaigns. ‘It Starts With Me’ aims to cut new HIV infections though condom promotion and the reduction of undiagnosed HIV infection through increased testing. ‘Can’t Pass It On’, is a stigma-busting campaign, highlighting that people on effective HIV treatment can’t pass it on. Go to tht.org.uk

  

Releasing potential

Deborah Evans, Managing Director of Pharmacy Complete

 

Community pharmacy is an important setting for women to access emergency contraception, get advice on choices and receive treatment as emergency hormonal contraception (EHC). Around three-quarters of all EHC is acquired from pharmacies in England, either as a purchase from the pharmacist, with a prescription from their GP, or as a local enhanced service commissioned by the local authority.

Providing EHC is a critical professional activity for pharmacists and pharmacy teams to ensure women in their care receive non-judgemental advice, support and a great experience; seeking emergency contraception can be a very anxious time for anyone.

Undertaking an empathetic and person-centred consultation is essential to gaining trust and in doing so, provides opportunity to engage on other sensitive issues – exploring future contraception options and the possibility of an STI. With so many EHC consultations undertaken in community pharmacy, this is the perfect opportunity to engage women in a conversation about testing for infection, and yet only 1% of all chlamydia tests are undertaken from a community pharmacy.

One of the challenges affecting this take-up is how sexual health services are commissioned and the reduction in funding for sexual health, which we’ve seen in various local authorities across the country. Additionally, sexual health services are commissioned and provided by different parts of the health and care system, leaving the possibility for people to fall through the gaps.

Since asking for STI screening help can be such a sensitive issue for individuals who are easily dissuaded from accessing services, we have to find a way of joining up with the person at the centre. Community pharmacies are part of the solution and are, in some more progressive areas, getting involved in broader STI testing in areas such as hepatitis B and C, HIV, syphilis and chlamydia.   

 

 

 

 

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Features

Taking CSR from concept to mainstream

by J Pinching 24. September 2017 16:21

 

 

Good & pill 

Words by Ian Mactavish

 

Pharma strategies around Sustainability, Purpose, Corporate Social Responsibility (CSR) and Access to Medicines are too often confused.

For years, many companies have created a hard separation between the CSR side of the business and mainstream commercial business. ‘Doing good’ and ‘selling medicines’ have somehow been seen as separate activities.

But the world is changing fast and pressure to change is coming from all sides. The millennial workforce is demanding to work for organisations that ‘make a difference’, emerging countries are looking for pharma companies who genuinely want to partner and progressive boards have realised that sustainability is not a fad, but an integral part of growing their business.

For companies and organisations that make up the pharma industry, the vision, mission and strategy are normally clear. Behind the desk in reception, on the walls around the business and on employee screensavers the organisation’s critical messages ensure everyone is living and breathing the corporate strategy!

While the company strategy is rigorously cascaded through the organisation into brand strategies, functional strategies and marketing plans, the one area where there is often inconsistency is in CSR. Flicking through the list of activities that have been supported by the CSR or sustainability team is to find a smorgasbord of excellent initiatives supporting needy causes, but it is essentially an activity list.

These initiatives often stand apart from the strategies and skills of the business. Too often the programmes are chosen to reflect the short-term interests of senior management teams and are supported with a donation, normally handed over with a few photos for the annual report.

While such causes are almost without exception worthy and important, it makes no sense. Companies are used to long-term plans and commitments when launching medicines so why don’t they do the same for sustainability strategies.

This would also apply to recipients and good causes; long-term commitments make far more sense than irregular donations, while impactful interventions also require planning and first-class implementation.

 

Direction of travel

Pharma companies increasingly view access to medicine as a way of developing their business in emerging markets and there have been compelling examples of big industry names changing how they use their pioneering products.

AstraZeneca’s signature public health support programme, ‘Healthy Heart Africa’, is run in partnership with the Kenyan and Ethiopian Governments. With co-funding from USAID, it runs awareness campaigns, strengthens health systems and makes sure low-price anti-hypertensive medicines are available in programme sites.

With over three million screenings,  3000 healthcare professionals trained, 500 facilities mobilised and training curriculums written, it is providing support at scale; support that the Ministry of Health appreciates. It is a genuine partnership; every piece of material used in the programme is co-branded with the Ministry of Health logo.

Novo Nordisk has run its ‘Base of the Pyramid’ programme for a number of years, also working with the Kenyan Government, running awareness campaigns, strengthening health systems and providing low-cost insulin through the Christian and Catholic Health networks.

In addition, Novartis and Takeda are making steps to develop their capability in these areas, creating new non-communicable diseases programmes and setting up wider collaborations, while GSK still top the access to medicines index for their broad approach to sustainability and access to medicines.

Emerging collaborations are wider still. New collaborative research models are also supporting medicine development for the most burdensome diseases in low and middle-income countries and new sources of funding are coming on stream to partner with pharma companies on manufacturing volume guarantee schemes.

In June the UK Government’s Development Finance Institution, whose mission is to support the building of businesses throughout Africa and South Asia, announced a new five-year strategy that included investments focusing on pricing and access to medicines.

The journey is at the early stages, but the big message is clear. If you want a business which operates on a long-term basis, think long-term and ensure your sustainability strategy is at the heart of it. Your patients, employees and shareholders will thank you for it.

 

Talking shop: Sustaining sustainability

It makes sense that forward-looking pharma companies are taking sustainability out of CSR and into the mainstream business. Sustainability, after all, is proven to work in tandem with overall business aspirations in other industries. 

Unilever, for example, has been consistent thought leaders in this area:

•  It sells fish, so the fish business supports fish preservation (Marine Stewardship Council)

•  It sells tea, so the tea business supports sustainable plantations (Rainforest Alliance)

•  It sells products to wash hands, so it encourages people to wash their hands to reduce infections (‘WASH’ programme with the Kenyan Government).

 

Present danger: Donations must come with education

Bizarrely, CSR departments currently have rules preventing them from supporting and aligning with the business. What will also surprise many is that African governments, NGOs and facilities are also against medicine donations, though there are clearly exceptional circumstances when they are required.

What they need is long-term low prices, a stable and well managed supply chain and support on health system strengthening. Donations distort markets and don’t help patients appreciate the value of medicines. If a patient doesn’t value a medicine, they are unlikely to take it or adhere to the treatment path.

When a village in Nigeria was offered free mosquito nets, the farmers took as many as possible, and used them to build fences for their chickens and livestock. They were so pleased with the ‘free gift’ that they completely forgot to use them for sleeping under. In contrast, when a similar village was educated on malaria prevention and charged $1 a net all the villagers purchased a net and used them for their intended purpose.

Ultimately, the UN’s 2015 Sustainable Development Goals has set out the challenge for global health, recognising that there are trillion-dollar funding gaps to solve. Innovative partnerships and collaborations between non-traditional partners, pharma companies, governments and global foundations are clearly regarded as part of sustainable solutions.

 

 

 

 

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Features

Juno is a trans woman, HIV positive & an inspiration

by J Pinching 18. September 2017 09:11

 

 

They told her to leave university, she wouldn't, they told her it was hopeless, it wasn't, they told her she would die, she didn't. This is Juno.

One cannot help but be in awe of anyone that faces down stigma and emerges victorious on the other side. My guest today epitomises the strength and fortitude which sends boorish and bigoted attitudes back to the dark ages. It’s not about daring to be different, but about being yourself, as we’re about to find out.

 

What are you up to, Juno?

I divide my time between Spain and England. At my place in Spain I can write and build campaigns with no distractions. I come back to carry out campaigns in Britain, and I’ve also got a book deal and am working on some films about the trans community.

 

What is the sexual healthcare situation for trans people?

I’m a transwoman and I’ve been HIV positive for 25 years. When you’re trans and HIV you have very fractured healthcare. I would go to my HIV doctor and ask about hormones, or to my gender doctor and ask how my hormones interact with HIV medicine, and they’d say, ‘I don’t know anything about that’. I would also ask my GP how it’s possible to have safe sex as a transwoman and they wouldn’t know anything either. It struck me that the dots were clearly not joined up.

 

What are the consequences?

The rates of infection for transwomen are still very high. If you’re a transwoman, you’re 49 times more likely to contract HIV than any other group and it is estimated that 19% of all transwomen worldwide are HIV positive. From my own experience, I am quite privileged; I work, write and have access to free healthcare in England, which means my HIV meds and gender realignment have been provided. The way transwomen are treated on the NHS, however, needs considerable work.

 

How are you helping to change this environment?

A couple of years ago I looked at trans people in education; teachers and pupils. This involved putting on round tables and getting funding for outreach work. The Paul Hamlyn Foundation supported this drive and we put on events called ‘Finding My T-Spot’. This helped to push research, because there is no data in this country about trans people and HIV, and last year, I put on an event at Gilead, establishing what we needed to discover.

 

Sounds like pioneering stuff.

It was attended by Valerie Delpech from Public Health England, several senior consultants in the country, transactivists and the media. An advisory committee emerged, which looked at all the research going on involving trans people and sexual healthcare, and from that came two research projects which look at the sexual healthcare experience of transwomen in this country.

 

How has this evolved?

I am patron of the sexual healthcare charity cliniQ, one of only two centres solely devoted to trans people. I received a pot of funding, in order to do outreach work, and now we’ve trained all the GPs in the South East, and staff from several sexual health clinics across the UK. I have also made the ‘Finding My T-Spot’ cliniQ film, which is designed to highlight the work to areas outside London. I am now looking to make a film specifically about transwomen who are HIV positive.

 

How can the health risks to trans people be reduced?

People talk about trans people as being a high-risk section of society, but no one group in society is inherently risky. What does pose a risk is the inconsistencies in healthcare structures. The gaps between GP, gender clinician and HIV clinician mean they don’t have shared knowledge, and that’s where people fall through the cracks. We still have people turning up at cliniQ with AIDs-defining illnesses, because they're not being picked up early.

 

It seems that healthcare professionals urgently need an upgrade in this area.

Time and time again I’ve heard GPs saying, ‘I’ve never met anyone like you’, and I feel like saying, ‘Well I’ve never met a 64-year-old GP with those particular spectacles before’. It’s not good enough - part of their remit is to know about me, and I hope through the legacy of the work I’m doing, a more cohesive network will be created.

 

It is noticeable in the last few years that trans people have emerged from the shadows.

For a long time, we were presented as victims and even classified as having a mental illness. That made it easy for people to categorise us as second-class citizens. In turn that placed us in a very passive position in relation to our healthcare. A decade ago, trans people lost their jobs or were denied access to their children, but recently the community has said enough is enough and that there are laws to protect us. When we band together we become powerful; trans people are proud of who they are and no longer willing to hide.

 

Has this strength been fortified by the years of adversity?

It’s incredibly empowering to decide that what people see isn’t quite what you are, and make changes to address that. Subsequently, there has been a further kickback against our fight, and people want to question whether we can be ‘real women’, but I won’t go there anymore – there is more important work to be done, like ensuring people are living safe, aspirational lives. I’m not having the argument about whether I should exist anymore.

 

You’ve lived a quarter of a century with HIV, Juno, that’s an incredible achievement.

I know, I should be presented with some kind of medal, or a nice hand bag. When I was told I was HIV positive, I had a partner who was extremely ill. I was given a form, which said I was expected to live six months and entitled to death benefits. It was a time when there were no HIV clinics, just rooms at the end of long corridors. There were no nurses willing to take your blood, because they didn’t want to go near you.

 

That’s unbelievable.

People thought we were the scum of the earth. You couldn’t even get a dentist. When I did find one, it was the last appointment of the day and he would literally cover the entire dental surgery in cling film. Even friends would check which glass I was using and people like Edwina Curry were saying that no morally upright person needed to worry about AIDS. The stigma was colossal, but I’m still here, and as entitled as anyone to have dreams and laughter in my life. In a way, it made me who I am today.

 

How on earth did you survive?

I started to set myself goals. I was in the first year of university when I was diagnosed and they wanted me to leave, but I thought ‘If I’m going to die, I’m going to die with a degree certificate in my hand’. I lived long enough to get my Masters and, by that time, I thought ‘Actually, I don’t want to die’. Then the new drugs started to come out, which we could trial, and the years started to clock up. I am a positive person, and love being alive, and was like that even before my diagnosis. The world is a wonderful place and I wanted more of it. I have continued to challenge myself, like moving to Spain among the mountains, in the middle of nowhere.

 

What prejudice are you encountering in 2017?

I wrote a series of pieces that studied online dating, so I joined Tinder. As an experiment, I started by only putting an image of me on the site. As a result, I got lots of comments, mainly from younger men, who said they ‘liked older women’. I thought, ‘Bugger off’, but at least it was supposed to be complimentary. Then I added that I was a transwoman, and still received a lot of interest. Finally, I revealed I was a transwoman living with HIV, and was bombarded with anger, aggression, threats and ignorance. Instantly I became
a bad person. The stigma is still there.

 

What treatments have you been on over the years?

In the early days, I went through a whole gamut of new drugs, with all sorts of extreme side-effects. Now, it’s easy to adhere. I’ve been on Truvada and Nevirapine for years, and been undetectable and well for as long as I can remember. I’ve always been very motivated to be on top of my own care – asking questions and making sure I was comfortable with the medication I was on, and able to thrive on it.

 

When did you decide to become a trans woman?

I had made the decision years ago, but because I was HIV positive GPs and PCTs would turn me away and no one would fund the procedure. Then one day I was accepted and had the surgery. It’s incredibly liberating to feel like you’re truly being yourself. Most of our lives are segmented, blocked and labelled, but I won’t be in any kind of closet.

 

You must be proud of your part in the trans revolution.

Whenever there is a group of people that are marginalised, eventually they come together and mobilise. When the abuse stops hurting, you start to fight back and build structures that look after you, because no one will do it for you. Hopefully, through my work, it’s beginning to happen with trans people and HIV.

 

What record would you choose for the soundtrack of your life?

This sounds completely corny, but it would have to be ‘Changes’ by David Bowie. One of my dearest friends, who was among the first to die of AIDS, in the late eighties, introduced me to Bowie. I don’t miss many people, but I miss that friend’s joy for life and what they would have brought to the world.

 

It’s your last supper, what are you having?

My homemade mushroom risotto, with lots of good parmesan.

 

Sounds delicious. Goodbye, Juno.

Bye John.

 

 

Make that change

If you are a transgender person, thinking of transitioning or want more information about subgroups within the trans community there are several very
useful online platforms providing advice, support and inclusivity.

Trans adults: gires.org.uk

Advice and support: transgenderni.com

Self-help and social: beaumontsociety.org.uk

Trans law: pfc.org.uk

 

If you’re working in pharma, and you think your company could be doing more in this area, why not visit cliniQ, the pioneering sexual health centre for trans people. Head to Dean Street in Soho or visit cliniq.org.uk

 

 

 

 

 

 

 

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Features | Top Story

Why are men often reluctant to seek help for health worries?

by Amy Schofield 11. September 2017 10:28

 

 

Man alive 

One in five men will die before the age of 65. Men die on average six years earlier than women. Suicide is the leading cause of death among men under 45. These are stark statistics, yet men apparently still find it more difficult than women to seek help when they have health worries.

What is being done to change men’s attitudes to health?

 

Boys will be boys

Dr Mark Street is a GP who has worked in the NHS and private sector for 26 years and has a private practice at Spire Parkway Hospital in Solihull. “I have noticed the unwillingness of men to go to their GP and talk about health matters. I often see male patients who have reached a stage when their partner is asking them to seek help,” he says. “Many are suffering symptoms, such as lack of sleep, mood swings, lower performance at work or relationship issues. Yet despite being concerned they allow the situation to worsen.”

An EU–wide report, ‘The State of Men’s Health in Europe’, addressed the reasons behind why men are less likely than women to visit their doctor or pharmacist, and found that it could be down to the influence of culture on the shaping of masculine identity. From an early age, the report states: ‘Boys learn not to show physical or emotional vulnerability, and they are encouraged to strive for achievement and success.’

It adds, ‘fear surrounding the potential loss of masculinity may result in a façade of control and stoicism, instead of honesty about reporting symptoms or openness about feelings and insecurities associated with particular illnesses’. Meanwhile, according to a report cited by the Men’s Health Forum: ‘Health is often socially constructed as a feminine concern.’

So-called ‘health literacy’ is also an important factor, and there are not only differences in health literacy levels between men and women, but between men of different socio-economic groups. A 2017 report from the OECD, ‘Understanding the socio-economic divide in Europe’, found that: ‘Men with lower levels of education have 2.7 years less life expectancy than the better educated’.

This is due to various factors; a King’s Fund report found that men are not only more likely to indulge in four risky behaviours such as smoking, excessive alcohol use, poor diet and low levels of physical activity – but that professional men were least likely to have three or four unhealthy behaviours and unskilled men most likely to have them.

 

Generational divide

Karen Stalbow, Head of Policy, Knowledge and Impact at Prostate Cancer UK, says that the charity’s research shows that men sometimes don’t see the point of worrying about ill health, despite the risk of ignoring it: “There are several factors that stop men who are at higher than average risk of prostate cancer from recognising their risk. Some men we spoke to thought it wasn’t worth worrying about exactly what illness you’ll get. They preferred instead to just deal with it when it happens. This means they will likely only address issues if they show symptoms, unless directed by a GP.”

Dr Street points out that there may be a different attitude among younger male patients thanks to greater access to digital information: “I personally think younger men are accessing their GPs more than other age groups due to a heightened awareness of health problems through social media and the internet.”

Karen says, however, that men are more likely to seek help for health concerns the older they get: “We know that some men can be reluctant to visit their GP with health concerns, but recent research we undertook showed that, as they get older, men can become more likely to act quickly when they notice changes in their body.”

 

Head space

Data from the Samaritans Suicide Statistics Report 2017 reveals that the highest UK suicide rate was for men aged 40–44, and that male rates across the UK remain three times higher than female rates. The 2016 ‘Masculinity Audit’ from male suicide prevention charity, Calm, found that men are less likely than women to tell friends about being depressed, and doctors may not spot danger signs. The tide may be turning, however, thanks to campaigns such as Time To Change’s ‘Be In Your Mate’s Corner’ campaign and the young Royals’ charity Heads Together.

Time to Change, the mental health campaign run by charities Mind and Rethink Mental Illness, carried out research into men’s attitudes towards mental health over the course of a year, which included feedback from 18 focus groups.

This insight revealed barriers preventing men from opening up. Men are less likely to report their own experiences of mental health problems, less likely to discuss them with a professional and more likely to say that mental health problems are the result of a ‘lack of self-discipline and willpower’.

A negative perception of mental health problems may be a reason why men don’t seek help, according to Dr Street: “Often mental health issues are perceived as a weakness by male patients and many are reluctant to ‘open up’ to their partner or GP as they see this as being a failure,” he explains.

Men, it’s time to talk as if your lives depended on it.

 

 

 

 

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