Dayglo

Written by Abi Bown / Produced by Theatre of Debate

Facilitator Notes

Introduction

‘Dayglo’ tells the story of a mother and daughter both affected by breast cancer and their relationship with a teenage boy whose family is affected by sickle cell anaemia.

Abi Bown’s moving play explores the issues raised by the personalisation of medical treatments according to our genes.

Developed in partnership with The Association of Medical Research Charities (AMRC) the University of Ulster, the NHS Sickle Cell & Thalassaemia Screening Programme and supported by the Wellcome Trust.

‘DayGlo’ explores the social, moral, scientific, economic and political questions raised by advances in pharmacogenetics, the exciting new science of personalising medical treatments according to our genes.

Aims

The programme (play, debate and educational resources) aims, through theatre and debate, to:

  • Raise young peoples’ (14-18) and adults’ awareness of the issues raised by pharmacogenetics, the move towards personalised medicine and its impact on our future health, by engaging them in an informed debate about the issues surrounding the subject through the Theatre of Debate programme.
  • Identify and clarify misunderstandings and provide engaging stimulus material to provoke discussion in order to gather both quantitative and qualitative data on the attitudes and concerns of the target audience.
  • To help young people and the public in general to develop a realistic perception of the opportunities and challenges which pharmacogenetics raises.

Sensitive Issues

Like any good drama, ‘DayGlo’ explores some challenging issues including: terminal illness, breast cancer, genetics, genetic screening and sickle cell anaemia. Given that one in eight women will develop breast cancer, it is likely that a number of your students will have direct family experience of the disease or indeed know of friends’ families who have been affected. If you or your students would like further information on Sickle Cell or Breast cancer can we suggest you start by visiting whichever of these sites is most appropriate.

Breakthrough Breast Cancer
http://www.breakthrough.org.uk/breast_cancer/

The Sickle Cell society
http://www.sicklecellsociety.org/

As six young people (13-24 years old) are diagnosed with cancer in the UK every day, it is also possible that one or more of your students may have direct personal experience of this. If you would like further information regarding teenage cancer, visit Teenage Cancer Trust’s website www.teenagecancertrust.org/what-we-do/education.

When discussing the play after the students have seen it, it is important to ensure that there is respect and trust within the group to enable open discussion. It is advisable to set clear ground rules with the students focusing on listening to and respecting differences in opinion.

Short Synopsis

A young woman is forced to make choices in a world of uncertainty. Stella is desperate to explore what choices are open to her mother Evelyn, who is battling breast cancer. She is eager to fan the flames of hope and have her mother restored to her, but the odds are precariously stacked against them.

“When I was a teenager I was running around barefoot, I didn’t have a thought for the future, it was all about the music”

Poly Styrene (Marianne Elliot-Said) of punk band X Ray Spex, who died of breast cancer in April 2011.

Plot Outline

Stella arrives home in Brighton to visit her mum Evelyn after a five year absence. Anxious about the reunion, she stops off at a chicken take- away joint and is served by Noel, who dampens her fears with his wit. Stella meets her mum at an eclectic sea-front flat and learns that mum is recovering from breast cancer.

Stella feels manipulated into staying on in Brighton, but can see Evelyn is in need of support. Noel at The Chicken Shack confesses he has a brother with sickle cell anaemia and together they set about familiarising themselves with Evelyn’s medical condition.They discover that Evelyn has a family history of breast cancer of which she was unaware, Great Great Grandad Douglas died of it in 1920, his two daughters also died from cancer years later.The family history information means Evelyn is now eligible for BRCA testing to see if she is positive for BRCA 1 or 2 – genes which increase the risk of breast cancer.

Stella persuades her mum to have the BRCA test but Evelyn is cautious: she has fought most of her life from the standpoint of anarchy – what the state has got on you they can use against you – including your genes.

Also, if Evelyn turns out to be BRCA positive, this will have implications for Stella because it indicates that the cancer has a higher chance of being inherited. The test results show that Evelyn is indeed BRCA positive. Evelyn’s nurse, Brian, is optimistic, pointing out that Evelyn may benefit from new drugs called PARP inhibitors which are targeted to BRCA positive tumours.This is an example of pharmacogenetics at work.

Evelyn does not automatically have access to the PARP inhibitor because it has to undergo clinical trials in order to be shown to be safe, and to work in the way intended. Running such trials is dependent on people being willing to take part and ‘chance’ being randomly given the new drug or the best existing treatment, ie some form of chemo.

Stella wants Evelyn to join the clinical trial, while Evelyn is reluctant to subject herself to further treatment and side effects in the 50/50 hope of getting the new drug. Finally agreeing to the trial, Evelyn distracts herself with collating her musical past which is to be a posthumous gift for Stella should she not do well.

Stella is between a rock and hard place, with every new bit of information a new challenge emerges – should she now get tested herself? If Stella too is found to be BRCA positive she may be offered regular screening or preventative surgery.Would Noel still be interested in her if she has the “bad” BRCA gene?

Evelyn comes off the trial early having found her health worsening whilst others on the trial appear to be flourishing/dramatically improving. Stella is angry, her mum is giving up and not helping in the advancement of a cure that Stella herself may need one day. Evelyn would rather hire a swanky hall in Brighton Pavilion for a farewell gig.This is what all the information from unearthing dear old Great Great Grandad Douglas has led to – Evelyn’s choice and Stella must accept it.

Evelyn hires a room in Brighton Royal Pavilion for a punk party, Stella can’t bring herself to go. Noel pleads for Stella to consider turning up but there’s too much baggage from Stella’s past, it’s Stella’s choice to stay away, she runs to the beach as the gig plays out behind her.

Evelyn finds Stella under the pier at dawn. Reunited in the moment, mother and daughter watch the sun come up together and finally the healing process truly begins.

Abi Bown October 2011

The Issues and Themes

Here are some of the issues that could arise for discussion after seeing DayGlo:

  • Knowing your genetic profile will not provide a guarantee of effective treatment.
  • How will pharmacogenetic information affect decisions about the provision of healthcare?
  • Personalised medicine is tantalisingly on the horizon but there is still some way to go before it is a reality for most people or conditions.
  • How should pharmacogenetic tests be regulated?
  • Should patients be obliged to take a genetic test? It might be in their best interests, but should they have the freedom to decline even if it meant a doctor might prescribe expensive medicine that might have no value or damaging side-effects?
  • What will happen if we can identify people who cannot respond to any drug treatment for a given condition, and who may end up with no medication? Companies may be unwilling to develop drugs for small groups of patients, or drug costs might be too high for healthcare providers to buy them.
  • Some genetic tests may show more than just your potential reaction to a medication. Some SNPs are also linked with increased risks of particular diseases, such as type-2 diabetes and Alzheimer’s.Would you want this information?
  • Pharmacogenetics is a particularly Western concept in medicine.Worldwide, 884 million people (1⁄8 of the world’s total population) have no access to clean water let alone advanced medical techniques.As the wealthyWestern world advances medicine, a large gap is created based on access to health and medical products.
  • Many believe that pharmacogenetics, like other new fields spawned by the Human Genome Project, represent a misallocation of resources. Rather than embark on learning how genes indicate a predisposition to disease and developing cures and enhancements, global efforts should be spent on solving more urgent problems facing humanity, such as famine or accessibility to clean water.
  • If pharmaceutical companies’ motivations are in part based in making profit, is this problematic? Surely any medical research into certain areas is better than no medical research? Why do companies, the government, other public funders, pick certain areas to research and not others?
  • Do you think you would want to know if you had, for example, the BRCA gene linked to breast cancer? What should be done with this information? Would you tell your daughter, sister, mother, brother etc. if they also could be at risk of having the BRCA gene?
  • Who cares about medical records? If we all had genetic smart cards, what issues would this raise if they were stolen or lost?

Preparatory Activity 1: What does it mean?

Objective

A discussion exercise to ensure that your students are familiar with the key terms and phrases referred to in the play. You may wish to scan the included glossary and substitute alternative words or phrases that you may feel are more relevant.

Process

Explain that you are going to say a word or phrase and that when you call out their name, you want each of your students to say the first word that comes into their head.

Explain that if they can’t think of a word or if their mind goes blank, they can say ‘Pass’.

After each round clarify the actual meaning of the word or phrase if appropriate and discuss, as a class, some of the associations that have been shared.

Words and Phrases

PharmacologyCancerInheritedRiskBrighton
PharmacogeneticsBioethicsPunkWonder DrugSide Effects
Personalised MedicineGenetic TestingGenetic Screening

Preparatory Activity 2: What do we feel?

Objective

To explore the emotions that students might attach to some of the key words and phrases associated with pharmacogenetics.

Process

Explain that you are going to say a word or phrase and that when you call out their name, you want each of your students to say the emotion that they associate with that word.

Explain that if they can’t think of a word or if their mind goes blank, they can say ‘Pass’.

Discuss, as a class, some of the associations that have been shared.You may wish to scan the included glossary and substitute alternative words or phrases that you may feel are more relevant.

Words and Phrases

Human GenomeCancerIllness
Genetic TestingSickle Cell AnaemiaClinical Trials

Preparatory Activity 3: What do we think?

Objective

To explore what your students know, think and feel about issues posed by advances in pharmacogenetics and the questions raised in DayGlo, before seeing the play and participating in the debate. You might want to repeat this activity as a follow up activity as well.

Resources

A large empty classroom or drama studio.

Process

Ask your students to stand in the centre of the space.

Explain that there is an imaginary line running down the centre of the space, one end of the line represents ‘Agree’ and the opposite end of the line represents ‘Disagree’. The middle of the line is ‘Don’t Know’.

Explain that you are going to read out a series of statements. If they agree with the statement they should go and stand at the end of the line that is ‘Agree’. If they disagree they should go and stand at the end of the line that is ‘Disagree’. If they are not sure or don’t know what they think they should stay in the middle.

After they have taken up their positions, ask your students to explain why they have chosen their position.After hearing from several students give your group the opportunity of changing their position.

Repeat the process for each statement.

Statements

  • I’d be happy to have genetic testing if it meant a medicine would work better for me.
  • Pharmaceutical companies developing personalised medicines are more concerned with profit than patient care.
  • If it were possible, I would like to know how my genes could affect my future.
  • Scientists are the people who understand emerging technologies and should be the ones to make moral decisions about using them.
  • Medicines are not “one size fits all” and so we should do whatever we can to reduce the risk to adverse reactions – including having genetic tests.
  • Exposing patients to genetic testing could lead to prejudice or discrimination of particular groups.
  • Promoting changes in lifestyle should be encouraged as a better way of reducing the NHS bill than Pharmacogenetics.
  • In terms of what we know now adverse reactions to medicines are estimated to be responsible for 6.5% of all U.K.hospital admissions.

Preparatory Activity 4: I’d like to ask…

Objective

To prime students for the questions that they will have the opportunity to ask in the debate section of the production of DayGlo.

Resources

Pen and paper.

Process

In pairs, ask the students to come up with two questions. Both are for people who have strong opinions on Pharmacogenetics:

Question 1: Is for a pharmaceutical company developing treatments for breast cancer?

Question 2: Is for someone receiving treatment or someone close to them?

Ask the students to make a note of the questions and then share them with the class.They could also take the questions with them into the play and ask them in the debate.