My Love-Hate Relationship with My Medication

Many patients have conditions where they need to take medication for the rest of their lives. Living with a chronic condition can have a profound effect on a person's life, from a change in their lifestyle to even being forced into an alternative career plan. Taking daily medications becomes a part of their new routine and for many these treatments help improve their health and their overall quality of life, but sometimes they can also create other problems and patients may enter in to an ‘internal battle’ to take them.

I am one of those patients

At the age of 19, I felt my world had been turned upside down when I received a diagnosis that I never expected and initially really struggled to accept. I resented that I would have to rely on medication for the rest of my life as well as the implications my new diagnosis would have. However my attitude definitely changed as I gradually came to terms with my condition, and realised that things were not as bad as I first thought! My medications do more for me than just helping to keep me healthy and my condition under control. They enable me to have the freedom to be "normal" and go about my daily life without constantly worrying about being unwell. They help me to stay out of hospital, to work, go on holiday and make plans, and so for all of this I love them. I wonder how many people can say they have something as powerful and positive in their lives.

However, a part of me hates them too for the side effects that they come with. For many patients, a balancing act must be achieved between finding the most effective dose but with the least amount of side effects. Personally I feel switching feels risky when other medications aren't guaranteed to be as effective and come with their own set of (often similar) side effects, and so it can become a case of "better the devil you know".

I love them, but I hate them

I feel lucky because I have a specialist who is incredibly knowledgeable, and who takes the time to listen to my concerns and what is important to me and involves me in decisions around my care. However he is a busy consultant and it can be months in between seeing him, and what if I have problems with my medication in the interim period?

Having recently increased one of my medications, I found myself at the end of my tether struggling with side effects and felt pretty miserable. I fleetingly flirted with the idea of stopping them for a few days just so that I could have a respite from feeling unwell, and know that I am not alone with this feeling. I am aware of the dangers associated with this and so wouldn’t stop medication without appropriate medical supervision, but I can definitely understand and empathise with people who feel pushed to this extreme.

So what could help?

·         Patient information leaflets need to change and include more details. They often tell patients to get in touch with their doctor if they have problems, but this often isn’t easy when clinics are frequently fully booked. GPs are commonly unable to advise with specialist medications. Patients value advice and information about not just what, if any, of the side effects someone might expect, but also which of those side effects are like to be transient and if perhaps I (and patients like me) should persevere to see if they subside. There is also a large scope for practical suggestions on things that they can try to help alleviate these symptoms.

·         Signposting to patient friendly websites. In my view, the companies that manufacture the medications prescribed to me by my doctors could add considerable value to their products by pointing users to authoritative and evidence-based patient friendly websites with more relevant and easily digestible information - or linking directly to their own version of this. These need to offer general advice and support around disease management as well as information about their medication.

·         Industry-led patient forums. Commonly patients gravitate towards online forums to ask other people with the same condition for their recommendations and experiences, but these often aren't monitored or regulated and there can be huge differences in the accuracy and helpfulness of information shared. Developing forums that are facilitated by industry experts from within the medical and pharmaceutical industry could have a significant positive impact and reach many people.

In my view, pharmaceutical companies could do much more to support patients’ alongside what they already do in terms of educating healthcare professionals. At Branding Science we work with our clients to understand how patients really feel about their condition and their medication, and what they want and need from their treatment. Ultimately we want patients to really engage with their treatment and truly value the medicines they use on the basis that those medicines are enabling them to have a better quality of life sustained over a significant period of time. Ideally this kind of patient/medicine relationship should lead to the development of brand loyalty amongst patients and healthcare professionals alike and will contribute towards the building of a deeper trust with the industry.

Email us at info@branding-science.com to discover how we can help you to understand how patients really feel, and how you can best support them and address their needs

This blog was written by Linzie Reason, Marketing Communications Executive at Branding Science

Excuse me Doctor, I read this on the internet…?

I recently became aware of an article being shared across social media from a popular tabloid newspaper, informing readers that a bladder drug that is widely prescribed here in the UK increases a patient’s risk of developing dementia by more than fifty percent. In light of these risks, doctors recommend that it should no longer be used at all - information that was due to be presented at the European Association of Urology conference but was not yet publicly available.

Having studied Medical Sciences at undergraduate level and now working at Branding Science, naturally I was interested in where this information had come from. There was no reference made to the scientific evidence or research behind the claims made in the article, leaving readers (and especially those currently being prescribed this medication) unable to determine the accuracy or relevance of the statements made and consequently make a fully informed decision regarding any choices they may subsequently take regarding their treatment. Indeed on reading some of the comments it was clear that some readers were not in any way interested in the scientific rigour of the article and were taking the information presented at face value.  Some bladder patients were even saying that they were going to immediately stop taking their medication before even consulting with any relevant healthcare professional.

It is hardly surprising that the effect of what is seen on the internet can be dramatic, especially as patients can often feel overwhelmed by their health conditions and desperate to find a cure and feel better. 

So where do people go to try to find out what is best to do for their health?

Patients no longer rely solely on their doctors and nurses as their ‘primary and authoritative’ source of advice on their health.  Nowadays they will be influenced by many different factors. With the internet at the tip of our fingers, patients will commonly look online for more information about their condition, medications or symptoms.

As an industry, pharmaceutical companies have a responsibility to the patients taking their drugs and the doctors who prescribe them. We can use various aids to inform doctors (and patients) about the benefits and risks of a particular medicine (often supported by the intelligent use of market research), but there is little or no rigorous control over content is released by the media, or what information (positive and negative) may be shared by patient support groups and on online support forums, or, indeed what is gleaned by talking to trusted friends and family. 

But surely having a greater access to information is a good thing?

It can be, especially if it increases awareness of specific health issues or leads to a patient feeling better able to manage their health. Yet what happens if the ‘information’ is unhelpful, inaccurate, and delivered in a way that isn’t easily understandable or indeed relevant?

Look up “best treatment for cancer” online, and there are over 200 million websites for you to choose from. Alongside the up-to-date, evidence-based sites, there are also a large number of deeply unscientific sites promoting among other things “natural cures”, ‘specialised diets’, strange exercise programmes’ and even DIY cancer cure kits!

How do people navigate the web and filter through the vast array of sites to find those that are free from bias, authoritative and grounded in evidence? Are people looking at these information sources and able to decipher the medical terminology and jargon along with any detailed scientific information published online (as well as the information that isn’t factually correct) in order to be able to make an educated choice?

So what can we do?

The internet will never replace the profound human dimension of the doctor-patient relationship. Understanding how an illness affects a patient, and the importance of finding the right treatment for them, helps empower patients to better manage and feel in control of their health. Healthcare professionals need to identify reliable healthcare websites, give information to patients that is accurate, and build relationships that encourage open dialogue so that patients feel able to come to them with their concerns.

Here at Branding Science, we believe in patient centricity and care about getting it right for patients. Through our intelligent market research techniques and understanding of patient insights we help our clients to build a brand that truly addresses the needs of patients and fosters a relationship of open communication with healthcare professionals.

Email us at info@branding-science.com to find out more about how Branding Science can help you build a brand that understands and meets the needs of patients

Written by Linzie Reason, Marketing and Communications Executive at Branding Science 

The Fault in Our Stars

 

Have you seen the new trailer for The Fault in Our Stars, the adaptation of John Green’s bestselling novel?

It’s the story of a girl named Hazel Grace Lancaster, who was diagnosed with Stage 4 thyroid cancer with metastatis when she was 13 years old. Rather than a sentimental book, however, The Fault in Our Stars is an engaging, heart-wrenching, and – believe it or not -  funny story about what it’s like to be a teenager. She happens to have cancer, but the disease is only a part (albeit a major one) of her journey. It is through that unique lens that John Green lets us sympathize and even empathize with someone suffering in ways most of us have never experienced.

 

 

Thyroid cancer comprises just 1% of all cancer cases in the UK and the condition is actually quite rare in children, which is what makes Hazel Grace’s experience all the more unique – especially because she is based on a real person. Esther Earl, a teenager diagnosed with thyroid cancer before she died in 2010, became famous online for her video diary which dealt with her experience of cancer. She befriended John Green before her death, helping to inspire the character of Hazel Grace. A collection of her writings has just been published under the title This Star Won’t Go Out.

We’ve worked with thyroid cancer before at Branding Science, understanding the patient pathway from endocrinologist care to oncologist involvement in the metastatic stages – the sort of doctors Hazel Grace would have been seeing. We’ve also worked in understanding the treatment landscape. Although Hazel Grace was on a fictional drug (Phalanxifor), she would have actually been treated with a drug like Lenvatinib or Sorafenib.

Since it’s World Cancer Day today, Branding Science has been reflecting on how books like The Fault in Our Stars and This Star Won’t Go Out can bring rare diseases to light that might not otherwise have the attention, support, or even research they need. More than that, however, they bring the patients to life, underlining how life still goes even with a cancer diagnosis.

Bacteria: Good and Bad and how to tell them apart

“I love bacteria because they remind me of God,” said the professor. He was religious and the head of the department of microbiology and biotechnology in Tel-Aviv University, explaining how religion and science can thrive together. “Bacteria are everywhere, you cannot see them and they can do ANYTHING – just like God”, he exclaimed.

Indeed bacteria are everywhere and they are definitely in our bodies covering our skin and lining our intestines, giving us our distinctive smell, eating away our dead cells and share our food. They provide us with valuable source of vitamins that cannot be obtained otherwise and they protect us from infections of other microorganisms. Some of us call them ‘good bacteria’ to differentiate our helpful little friends from the dangerous disease causing microbes. Our ‘friendly bacteria’ are actually symbiotic and opportunistic at the same time. We are dependent on our flora as much as under its’ threat.

Try to remember when was the last time you were prescribed a course of antibiotics. How did you feel?

I have been on such a course only three weeks ago, augmentin it was, a generic brand, and in a way I was relieved the manufacturer was not one of our clients (so I did not have to fill an adverse event form). Nevertheless, I was unwell. The antibiotics killed the bacteria on the lining of my gut affecting digestion and making me uncomfortable (forgive me for not giving more detail). It is a well-known side-effect that made me ponder over a tub of yoghurt, why not try and make targeted antibiotics? Wouldn’t it be grand if you could target bacteria causing disease and spare whole body’s flora? If we could differentiate good bacteria from bad?

What are bacteriophages?

Bacteriophages are viruses that propagate by infecting bacteria, their hexapods land onto their prey (Figure 1) and inject their DNA into the bacteria, giving it orders to multiply bacteriophages until the bacteria bursts, the progeny moves on to the next bacteria and so on. Bacteriophages are specific to a bacteria strain which gives them a potential to be employed as targeted antibiotics.

It is intuitive that we could utilise the specific power of bacteriophages into treating specific infections, but for some reason the technology has not been taken by the western world.

Phage treatment has been approved and in use in Russia and Georgia since the 1920s. It actually had been in use before penicillin was even discovered in 1928. However, somehow the fear of viruses and the excitement over chemicals has led to antibiotics being developed and widely used, and now we are facing a possible crisis of multiple drug resistant strains of bacteria (MDR). Some call MDR risk ‘the perfect storm’, with only a handful of new antibiotics developed since the 1980s, we are not prepared for the next outbreak.

At the Eliava institute in Tbilisi, Georgia, infections are being treated with bacteriophages.  For example, a case of tonsillitis is treated by gargling a bacteriophage broth and the patient is cured in 6 hours, no antibiotics involved.  In the UK a seven day antibiotics course is the standard of care.

Figure 1 Bacteriophages T4 sitting on a bacteria injecting their DNA into it (electron microscopy image Science museum),

What are the difficulties in producing bacteriophage based antibiotics?
First of all safety, the use of an entity that self-replicates and have the ability to evolve is difficult to regulate as a fixed chemical entity or biologic. Bacteria are likely to develop resistance to bacteriophages. When such a resistance develops it is likely that the bacteriophages will mutate accordingly, but that may cause issues with produced batches and regulation in mass production.

Formulation issues - you can’t get bacteriophages through our digestive tract, how can we bring them to their target? Can bacteriophage be inhaled for treatment of tuberculosis?  

Another issue with bacteriophages is that they cause bacterial lysis that releases endotoxins. These are toxic to patient and may cause severe side effects such as fever. 

Bacteriophages can be genetically modified to not lyse their target bacteria so one virus would kill one bacteria without bursting its walls. The dead bacteria will then be cleared by the immune system, also such attenuated bacteriophage would be easier to regulate. Just like the use of attenuated viruses in vaccines.

The main reason is a general lack of interest in developing antibiotics because of low return on investment (until there is an outbreak).

Bacteriophages have been used in the western world, for the invention of the probably the most profitable drug ever made.

In the 1990s the phage display technology was invented and utilised by Cambridge Antibody Technologies (CAT) and BASF. The scientists at CAT engineered bacteriophages to express antibody segments and used the ability of bacteriophage bacteriophages to mutate to create many different antibodies, called a phage display library. This library was reacted against TNFα (Tumor Necrosis Factor), the best matching antibody was chosen, cloned and mass produced as a humanised monoclonal antibody. Manufacturing and marketing were given to Abbot, and the brand Humira was named.  Humira is widely used to treat psoriasis, ankylosing spondylitis (AS) rheumatoid arthritis (RA), ulcerative colitis and Crohn’s disease.

The next most likely development in modern medicine will have to be a targeted antibiotic, maybe a bacteriophage? What do you think?

Figure 2 bacterial culture killed by bacteriophages (Wikipedia). Bacteria –white. Hole formed by dead bacteria in the middle.

Dr Shai Senderovich is a Research Executive at Branding Science,

Any opinions in this article belong to the author and do not represent Branding-Science.

Links:

http://www.bbc.co.uk/news/health-21799534

http://en.wikipedia.org/wiki/Phage_therapy

 

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