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

Accidental Blockbusters: Warfarin

“Of course, that’s how life is. A turn of events may seem very small at the time it’s happening, but you never really know, do you?” Tom Xavier

Warfarin is an anticoagulant currently prescribed to prevent blood clots. However it was originally introduced to the consumer world as a rat poison due to its haemorrhaging abilities.

In the early 1920’s a bizarre number of cattle in the US kept spontaneously bleeding profusely. Food sources in the area were scarce and so the cattle were being left to eat the damp, mouldy hay that was no good to anyone else. A Canadian vet twigged that the link between all of these haemorrhaging cattle was that they had consumed this unsuitable hay, and discovered that by removing the hay from the cattle’s diet, they returned to full health.

Thirty years later, the compound in the mouldy hay was finally characterised and was launched into the US market as a rat poison, proving an instant success. However a US soldier, unsuccessfully, tried to commit suicide by overdosing on this new toxin. Having been rushed to hospital, he was treated with vitamin K, the antidote, and made a full recovery, yet this started an investigation into the potential therapeutic use of the poison. And three years later, it was approved for use as an anticoagulant, with one of its first recipients being the US president at the time; Dwight D. Eisenhower.

One conspiracy theory, highlighting the dangers of warfarin and the complexity of its dosing regimen, suggests that Stalin was murdered using warfarin. As warfarin is tasteless and odourless, making it such a good rat poison, Stalin could have easily consumed it without knowing so, and he exhibited many of the symptoms commonly found in a warfarin overdose when he died.

This post was written by Graduate Research Exec Becky Geffen.
For more weird and wonderful pharamcetuical facts follow us on: @brandingscience

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.

Something Wicked This Way Comes

In the February of 1692, two girls from Salem Village in the young American colonies began to suffer from strange fits that left them screaming, uttering strange sounds, contorting into strange positions, and with violent outbursts. A minister from a nearby town described their illness as “beyond the power of Epileptic Fits or natural disease to effect” and – assuming that only the supernatural could cause this illness - the Salem Village soon began the famous Salem Witch Trials.

Swept up by hysteria, everyone accused their neighbors, friends, and family of witchcraft. The town executed twenty people, nineteen by hanging and one by pressing to death when he failed to plead guilty. Five more of the accused died in prison.  The final trial took place in May 1693 and, with the defendants found not guilty, the case officially ended – at least judicially. The trials never died in the mind of the public, however, and for the decades and centuries that followed it obsessed the public with its plethora of unanswered questions.

The Crucible, by Arthur Miller, is based on the witch trials.

One of the main questions: what caused those girls to act so strangely and spark the craze of paranoia that led to so many deaths? Many theories have been put forward throughout the centuries, mostly based on the assumption that the girls faked their illness either to fuel family rivalries or as a cruel prank.

In 1976, Linnda R. Carporael proposed a new hypothesis: that the girls were suffering from poisoning by ergot-tainted rye. Their symptoms cited in the trials – convulsion, hallucination, crawling sensations in the skin, tingling in the fingers, headaches, vomiting, diarrhea, mania, psychosis, and delirium – match that of ergotism. Moreover, there was an abundance of rye in the area and, during those years, the right weather conditions for ergot to flourish. Although this theory has been subject to some academic debate, it is still one of the most widely accepted reasons behind the seventeenth century hysteria. 

Ergot is a group of fungus whose consumption causes a number of severe pathological syndromes in humans or other animals. As early as 1095, a special hospital was founded to treat the symptoms of ergotism. The condition gained the nickname “St. Anthony’s Fire” for the order of monks who founded the hospital and the burning sensation ergot poisoning causes in the limbs of the contaminated.

The effects of ergot have also been used deliberately in drugs. As Paul L. Schiff Jr. explains:

In 1582 a preparation of ergot that was employed in small doses by midwives to produce strong uterine contractions was described by Adam Lonicer in his Kreuterbuch. The use of ergot as an oxytocic in childbirth became very popular in France, Germany, and the United States. The first use of the drug in official medicine was described by the American physician John Stearns in 1808, when he reported on the uterine contractile actions of a preparation of ergot obtained from blackened granary rye as a remedy for “quickening childbirth.” However, shortly thereafter the number of stillborn neonates rose to a point that the Medical Society of New York initiated an investigation. As a result of this enquiry, it was recommended in 1824 that ergot only be used in the control of postpartum hemorrhage. Ergot was introduced into the first edition of the United States Pharmacopeia in 1820 and into the London Pharmacopeia in 1836.

In modern pharmaceuticals, ergot is used in medicines in the form of ergotamine. One example is Cafergot, a Novartis drug which is used to treat migraine headaches. Although cases are rare, the Novartis Consumer Information cites a risk of developing ergotism associated with the drug. Cafergot was discontinued in the UK in 2012. Ergoline alkaloids, originally isolated from ergot fungus, is also used in pharmaceuticals for the treatment of Parkinson’s disease, albeit usually in synthetic derivatives.

It is incredible to consider that we are now able to harness this poison - which has tortured humanity for millennia – for good. Yet the risk of poisoning still remains high, with several outbreaks of ergotism in the twentieth century. The risk of witchcraft accusations may be lower in this day and age, but with Halloween approaching… perhaps it’s best if you watch what you eat.

Sources

Paul L. Schiff, Jr. "Ergot and Its Alkaloids" in the American Journal of Pharmaceutical Education, October 15 2006. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1637017/

“Ergot” from Wikipedia. http://en.wikipedia.org/wiki/Ergot

“Ergotism” from Wikipedia. http://en.wikipedia.org/wiki/Ergotism

“Ergotamine” from Wikipedia. http://en.wikipedia.org/wiki/Ergotamine

“Salem Witch Trials” from Wikipedia. http://en.wikipedia.org/wiki/Salem_witch_trials

"Cafergot” from Drugs.com. http://www.drugs.com/pro/cafergot.html

“Cafergot: Consumer Information” from the Novartis Canadian Website http://www.novartis.ca/products/en/pharmaceuticals-c.shtml