Campaigning for equal access to 5-ALA
Read how by working with people affected by a brain tumour, healthcare professionals, policy makers and politicians, we will deliver equal access to the best treatment and care.
The Pink Drink (5-ALA) is a valuable surgical aid which helps neurosurgeons see and successfully remove complete tumours during surgery.
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.
Research undertaken by us discovered that, currently, the Pink Drink is not fully available in almost 50% of neurocentres, meaning access to the best treatments is currently being determined by someone's postcode, not by what's right for them; and we've been campaigning to change this.
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."
We will continue to work alongside healthcare professionals and the government to ensure that this is followed through for the best outcome for those diagnosed with a high grade glioma so, eventually, everyone who should have access, will have access, and so no one has to say goodbye too soon.
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.