Carers Need Care Too

By the Tonic UK Team

As a healthcare communications agency we are dedicated to supporting the patient community, and working to improve the lives of patients and their families. But the work we do often extends to carers as well, who have a vital role in the care of patients.

This week is national Carers Week in the UK – an annual campaign dedicated to supporting the millions of unpaid carers across the country who look after a parent, child, partner or friend with a disability or illness, or who need age-related support.

The campaign aims to raise awareness of the challenges carers face, recognise the contribution they make and share ways to connect and support carers, so they can stay healthy and connected.

Healthy and Connected is the theme for this year’s campaign to highlight the importance of the health and welfare of carers.

Carers Week aims to shine a spotlight on the needs of carers both within the community, in the workplace, in schools and across health services. The goal of this week is to advocate for carers to get the practical help they need such as flexible working hours and remote working. Sadly, 72% of carers have to give up work to care for their loved one, so flexibility in the workplace is crucial to help reduce this trend.

What does this mean for our industry?

Pharmaceutical companies work closely with patient organisations to support and better understand the needs of the patients they work to treat, and some are now launching new initiatives to gain more knowledge about the growing carer community. Last year Merck carried out an international survey of 3,500 carers to uncover the everyday challenges that carers face in looking after their loved one. The research found that 47% of carers had feelings of depression, while 54% did not have time to attend their own doctors’ appointments. It also found that a concerning 55% of responding carers felt that their own physical health had suffered. Merck said the results speak for themselves, and have since launched an initiative called Embracing Carers, which strives for increased awareness and support for the carer network worldwide.

A Government report from last year found that 25% of carers had not had a day off in over five years. Ministers state they are now looking at a new action plan to improve carer provisions as part of the UK’s social care strategy.

More needs to be done to recognise and support this invisible army.

Carers across the UK – Fast Facts (from Carers Trust)

  • There are around 7 million carers in the UK – that is one in ten people.
  • Three in five people will be carers at some point in their lives in the UK.
  • Out of the UK’s carers, 42% of carers are men and 58% are women.
  • The economic value of the contribution made by carers in the UK is £132bn a year.
  • By 2030, the number of carers will increase by 3.4 million (around 60%).

Follow @carersweek on social media to learn more, and use #carersweek to join in!

Cancer 2018: The Promise of Hope; The Danger of Hype

By Dana Lynch, Executive Vice President, Global Strategy & Business Development

There is absolutely no arguing that academia and the life sciences industry now have an incredible understanding of why and how cancer happens.  New diagnostics and genetic markers, less invasive surgical and radiology procedures, and revolutionary personalized immunologic therapies for managing cancer have dramatically altered the way in which we approach the disease.

As a healthcare communications professional with more than 20 years of experience, I understand the value that PR, marketing and journalism can have in educating and encouraging audiences to learn more about innovation and driving adoption of novel, improved treatment.  I am proud to represent the incredible pharma and biotech companies, scientists and physicians that are committed to improving cancer detection and care, with the common goal of someday eradicating the disease entirely.

Unfortunately, the news and information surrounding these advancements too often gets abbreviated, even sensationalized.  They’re packaged into short headlines, 30-second sound bites or 60-second ads, featuring marketing speak as well as quotes from doctors, patients and celebrities who testify to the battles we are winning against cancer without putting the reality of the continued losses into perspective for the average viewer or listener.  In other words, some manufacturers and cancer hospitals, and very often the media, are generating a lot of hype with the hope they are dispensing.

Imparting hope is certainly critical when reaching out to those impacted by cancer, but I fear that simplifying the reality of a diagnosis with only hopeful and promissory messages, while treating “fair balance” and the realities of metastatic disease as white noise, can backfire.  In many cases, people read cancer-related headlines about the promise of today’s treatments and end up feeling defeated when they realize that this potential progress doesn’t actually apply to them.

My Family’s Experience with Cancer

Now before this comes off gloomy and cynical, let me declare that I have the unfortunate perspective of seeing cancer for what it still is – unpredictable, like life itself, which is evident when reflecting on the cancer journeys of both of my parents.  It is a disease that no oncologist can promise with 100 percent certainty to be able to manage, or cure.

Let’s start with my mother:

  • Diagnosed in 2006 with early Stage 1, hormone-positive breast cancer, HER-2 negative.
  • It wasn’t in her lymph nodes and was treatable without having chemotherapy – the oncologist, surgeon and others who had experience with breast cancer all emphasized this cancer was not just treatable, it was supposed to be beatable.
  • Just four years later, her cancer returned as metastatic disease in her spine and her liver. This time, the promise was that the cancer was treatable, just not curable.
  • In 2016, after six good and bad years of cycling through a variety of treatment regimens, including some of the newest, most promising options, my mom passed away.

Now, let’s consider my father:

  • Diagnosed with Stage 2b Non-Small Cell Lung Cancer in 2008; his tumor was large and not in an optimal location for surgery.
  • Although considered treatable, the survival statistics were not great and without surgery, treatment options were very limited (none of today’s immunotherapies, Keytruda and Opdivo, were available at that time).
  • After intensive radiation and a harsh chemotherapy regimen, his tumor almost miraculously disappeared.
  • Another small tumor appeared one year later, but a surgeon could remove it without requiring additional chemotherapy or radiation.
  • Now, 10 years later my dad (*knocking on my desk*) is cancer-free.

In a simple summary, it didn’t go as expected –my dad beat the odds, my mom did not, bringing me back to the “promises” being made through direct-to-consumer messaging.  It is important to remember that while we live at a time where improved therapies can help us live longer, more productive lives with cancer, we haven’t yet figured out how to fix cancer in every patient and in every scenario.

A Charge for the 2018 ASCO Annual Meeting

This month, a large portion of the international oncology industry will convene in Chicago for the American Society of Clinical Oncologists Annual Meeting.  I know my knowledge and experience with cancer is limited relative to the cancer clinicians and researchers, but I have enough experience from the past 12 years to give some impassioned advice to my clients and other companies in the oncology space, the PR and marketing people who work on their behalf and the media who will cover the meeting.  Please be careful with the promises you are making to patients.  My mother always said, “a promise made should be a promise kept.”  There will be a day when all patients can be treated to cure for a cancer diagnosis, but until we can make this promise, let’s be sure we take care with what we say and maintain the hope without too much hype.