Epilepsy Ireland News

10-12-2015 | Medical Research Charities Group publishes Manifesto for Medical Research

10 December 2015
print version share on facebook
'10-12-2015 | Medical Research Charities Group publishes Manifesto for Medical Research' image

The Medical Research Charities Group (MRCG), representing a coalition of more than 30 charities including Epilepsy Ireland, has called for investment in medical research to be ramped up if patients are not to miss out on new cures and treatments, and if we are not to lose our brightest and best researchers to more attractive research opportunities abroad.

The Group made the call as it published its Manifesto for Medical Research and urged political parties to pledge to make medical research a key priority should they form part of the next Government.

Among the key actions the MRCG is demanding are:

  • Investment: a commitment to ramp up funding of medical research and the appointment of a HSE research tsar who would have responsibility for championing research across the health services
  • Therapies: a streamlined process for the approval of innovative and emerging therapies so that once given the green light by the European Medicines Agency, patients can benefit without delay
  • Registries: the development of National Patient Disease Registries, such as those in place for cancer and cystic fibrosis, is vital. This would ensure that information, such as numbers diagnosed, survival rates, geographic variations, etc., across a range of conditions is captured, and trends and variations tracked to better inform policy and service development
  • Legislation: the urgent passing of the Human Tissue Bill and the Health Information & Patient Safety Bill is required to provide important assurances for members of the public in the areas of research oversight and ethics, data protection, use of human tissue, etc.
  • Rare Diseases: a detailed implementation framework is essential for the National Rare Disease Plan launched in July 2014, but which has yet to be even incorporated in to the Health Service Executive (HSE) Service Plan
  • Genetic services: a national policy on the future of genetic services in Ireland needs to be drawn up to address key issues such as clinical genetic services and counselling which play a key part in the diagnosis and treatment of those with rare diseases in Ireland.

Philip Watt, Chairperson of the Medical Research Charities Group, believes patients will be the real losers if Government does not take vital action now to prioritise medical research:

"Medical research has been pivotal in increasing life expectancy, reducing infant mortality, limiting the toll of infectious diseases, and improving outcomes for patients. Clearly, without significant investment, Irish patients will be left at a serious disadvantage. Patients in very challenging disease areas will have to go abroad if they want to access clinical trials for promising therapies that could make a huge difference to their lives. Patients will also be left in the slow lane when it comes to accessing treatments and therapies in the early stages of development. It is simply not right that Irish patients should be treated as second class to citizens in other European countries that really are pushing the boundaries and the possibilities of research.

"There have been rapid advances in the development of new therapies in recent years that have the potential to offer a major extension to quality of life and, indeed, life itself. It is evident, in the light of a number of recent cases where patients have not been able to access vital treatments in a timely way, that we need more appropriate decision criteria and a much more streamlined approach to reimbursement of new treatments and technologies. Patients, often in a very vulnerable state, should not be have to beg for the treatment that they deserve, caught in the crossfire of price negotiations between Government and the pharmaceutical industry."

For more information on the Manifesto, see the MRCG website.

Download the manifesto below.

Attached Documents

PDF icon MRCG Manifesto (MRCG_Manifesto.pdf | 1.13 MB)
web design by ionic