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Equal access to treatment and care

People affected by a brain tumour should have the same access to high quality treatment, care and information regardless of post code, age or tumour type. Unfortunately, this is not always the case. With your help we can change that.

In view of the challenges, particularly around variation in access based on where a person lives, we made equal access to high quality treatment and care for those affected by this disease a priority in its strategy to defeat brain tumours. We will highlight evidence and propose solutions to Government and others in the healthcare sector. We will also need your help to raise awareness of the problems and influence change.

I felt that the treatment I had was the best it could be. It’s not fair that other people in the same situation are not offered everything that I had. I would not want to have known if there was something I could have had to give me a better chance but the NHS didn’t allow me to have it.

Helen, patient

The Pink Drink – 5-ALA

Surgery is the major line of treatment for people with a high grade glioma. 5-AminoLevulinic Acid (5-ALA or the ‘Pink Drink’) is the only viable tool that aids neurosurgeons in achieving a higher percentage of successful tumour removal. In fact, the whole tumour is successfully removed in 70.5% of cases when the Pink Drink is used 1, which is up from around 30% without this valuable surgical aid2.

Without the Pink Drink, people diagnosed with a high grade glioma must undergo a rigorous course of chemotherapy and radiotherapy to reduce the amount of tumour remaining. Chemotherapy and radiotherapy are highly toxic and have a significant impact on the person’s health, energy levels, and appearance. When the Pink Drink is used, the amount of chemotherapy and radiotherapy needed can be reduced, or stopped completely, for a greater length of time.

Our impact

We campaigned for the universal roll-out of 5-ALA in all neurosurgeries in the UK, ensuring no person diagnosed with a brain tumour is denied access based on their postcode.

We’ve explored the barriers to accessing the Pink Drink and sent a Freedom of Information request to every neurocentre in the UK regarding their access. We then fed back everything we found to Tessa Jowell to arm her in her debate in the House of Lords on 25 January 2018. This has produced great success.

Lord O’Shaunnessy announced a response that,

“The noble Baroness specifically asked about the availability of a key florescent dye, and I can tell her it is called 5-ALA. It helps surgeons to see malignant tissue, so helps to ensure a more accurate surgical margin during surgery. We have spoken to NHS England in advance of this debate, which has committed to working with the cancer alliances and the brain cancer surgery centres to drive national uptake of its usage.”

After we had campaigned on this issue for many years, in May 2018 the Government announced the national roll-out of 5-ALA in all 27 neurosurgeries in England for all patients who could benefit from its use, regardless of where they are treated.

In July 2018, NICE (National Institute for health and Care Excellence) published new guidelines for brain tumours – brain tumours (primary) and brain metastases in adults – which are the first guidelines on brain tumours in a decade. We’re delighted that within these guidelines, NICE recommended the use of chemical dye in brain tumour removal.

Tom Roques, consultant clinical oncologist at Norfolk and Norwich University Hospital NHS Foundation Trust and the Chair of the NICE committee, stated “we want patients to have the highest quality of care possible. The roll out of 5-ALA will see more patients treated to a gold standard level of care and will help delay the recurrence of brain tumours”

Following the decision by the Welsh Health Specialised Services Committee in July 2017 to introduce the aid as part of its commissioning, Wales will now become the last region in the UK to provide the treatment, at its only neuroscience centre in Cardiff. 

The Department of Health and Social Care have agreed to roll out 5-ALA from April 2018.

Professor Keyoumars Ashkan, professor of neurosurgery and neuro-oncology lead at King’s College Hospital in London, regularly trains surgeons in the use of 5-ALA:

“Fluorescent guided surgery has been one of the most significant developments in the management of patients with high grade gliomas in the last decade.

“In the simplest terms, you can only remove a tumour well if you can see it. That is exactly what this drug allows you to do. We introduced the technique at King’s College Hospital almost eight years ago and I am confident that many of our patients have directly benefitted from it.” 

Professor Keyoumars Ashkan

5-ALA may not be suitable for everyone with a high grade glioma or in all circumstances. That is why we encourage people affected by a high glade glioma to talk to their doctor about whether it is appropriate in their case.

5-ALA is not going to cure you because there is no such thing as a cure for glioblastoma. What it can do is give you more time to spend with your family.

Michael, patient

1 Schucht P, Beck J, Abu-Isa J, et al. Gross total resection rates in contemporary glioblastoma surgery: results of an institutional protocol combining 5-aminolevulinic acid intraoperative fluorescence imaging and brain mapping. Neurosurgery 2012; 71(5): 927-35; discussion 35-6.

Stummer W, Tonn JC, Mehdorn HM, et al. Counterbalancing risks and gains from extended resections in malignant glioma surgery: a supplemental analysis from the randomized 5-aminolevulinic acid glioma resection study. Clinical article. J Neurosurg 2011; 114(3): 613-23.

Stummer W, Novotny A, Stepp H, Goetz C, Bise K, Reulen HJ. Fluorescence-guided resection of glioblastoma multiforme by using 5-aminolevulinic acid-induced porphyrins: a prospective study in 52 consecutive patients. J Neurosurg 2000; 93(6): 1003-13.

Diez Valle R, Tejada Solis S, Idoate Gastearena MA, Garcia de Eulate R, Dominguez Echavarri P, Aristu Mendiroz J. Surgery guided by 5-aminolevulinic fluorescence in glioblastoma: volumetric analysis of extent of resection in single-center experience. J Neurooncol 2011; 102(1): 105-13.

Feigl GC, Ritz R, Moraes M, et al. Resection of malignant brain tumors in eloquent cortical areas: a new multimodal approach combining 5-aminolevulinic acid and intraoperative monitoring. J Neurosurg 2010; 113(2): 352-7.

Jacquesson T, Ducray F, Maucort-Boulch D, et al. [Surgery of high-grade gliomas guided by fluorescence: a retrospective study of 22 patients]. Neuro-Chirurgie 2013; 59(1): 9-16.

Diez Valle R, Slof J, Galvan J, Arza C, Romariz C, Vidal C. Observational, retrospective study of the effectiveness of 5-aminolevulinic acid in malignant glioma surgery in Spain (The VISIONA study). Neurologia (Barcelona, Spain) 2014; 29(3): 131-8.

Slotty PJ, Siantidis B, Beez T, Steiger HJ, Sabel M. The impact of improved treatment strategies on overall survival in glioblastoma patients. Acta Neurochir (Wien) 2013; 155(6): 959-63; discussion 63.

2 Vecht CJ, Avezaat CJ, van Putten WL, Eijkenboom WM, Stefanko SZ. The influence of the extent of surgery on the neurological function and survival in malignant glioma. A retrospective analysis in 243 patients. JNeurolNeurosurgPsychiatry 1990; 53(6): 466-71.

Wood JR, Green SB, Shapiro WR. The prognostic importance of tumor size in malignant gliomas: a computed tomographic scan study by the Brain Tumor Cooperative Group. Journal of clinical oncology : official journal of the American Society of Clinical Oncology 1988; 6(2): 338-43.

Albert FK, Forsting M, Sartor K, Adams HP, Kunze S. Early postoperative magnetic resonance imaging after resection of malignant glioma: objective evaluation of residual tumor and its influence on regrowth and prognosis. Neurosurgery 1994; 34(1): 45-60.

Barker FG, Prados MD, Chang SM, et al. Radiation response and survival time in patients with glioblastoma multiforme. Journal of neurosurgery 1996; 84(3): 442-8.

Kowalczuk A, Macdonald RL, Amidei C, et al. Quantitative imaging study of extent of surgical resection and prognosis of malignant astrocytomas. Neurosurgery 1997; 41(5): 1028-36.

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