Stem cell therapies and regenerative medicine focus on repairing, replacing or regenerating cells in the human body, with the objective of reducing disease for often chronic, degenerative, and life-limiting diseases.

It is not uncommon for families whose loved ones have sustained severe injury to the brain post-encephalitis, to enquire about stem cell research.

Currently we are not aware of any stem cell research or regenerative medicine in patients post-encephalitis that can repair or reverse damage to the brain. 

Because of the enthusiasm and focus (often due to media attention) on stem cell research and regenerative medicine, a disconnect has occurred between the reality of where such research actually is, in comparison to patient and public expectation. There is a significant gap in terms of our understanding of where these developing technologies actually are and their future use in clinical practice with patients. We must be mindful that new and uncharted potential therapies such as stem cell research and regenerative medicine can pose high-risks to patients. Even if such research reaches a clinical trial phase (i.e. with patients) it will often only be conducted in patients who are going to die quickly anyway and/or where their quality of life is considered extremely poor. Innovative medicine will often mean there is a price to pay when balancing risk with patient benefit/outcome.

Research in this area is also extremely costly. The cost of developing high quality trials in this area means they are often unable to guarantee commercial returns for investors, thus reducing investment appeal and making research in this area difficult to fund. There are also arguments that research money spent in this uncharted area with no guarantee of success, is also money that is not being spent on other therapies and interventions that might have the potential to make a quicker and more significant differences and benefit to patients. Resultantly, research in this area will most often only be conducted with conditions that are more common than encephalitis, and  in conditions that are degenerative, in order to provide greater patient benefit.

The Lancet states: “High costs at this stage in an industry’s development are almost certainly unavoidable, arising as they do from the costs of research and development at the cutting edge of biology and technology, the limited scale of manufacturing, and the regulatory burden necessary to bring novel treatments from the laboratory to patients.[1].

Sadly poorly regulated trials and unregulated clinics exist. In some cases vulnerable and desperate survivors and family members turn to these institutions, often paying vast sums of money for unproven treatments.

In summary the cost of developing treatments in this field are high, efficacy of interventions are often undetermined, and the risk to patients can be both high and unknown. Therefore, research progress and regulation are can be slow.  In addition, much more work needs to be done in terms of ethics, the law and regulation to balance the risk to patients with any potential benefits.

                                                                                   Dr Ava Easton, CEO Encephalitis Society

[1] Cossu G, Birchall M, Brown T, De Coppi P, Culme-Seymour E, Gibbon S, et al. . Lancet commission: stem cells and regenerative medicineLancet (2017) 391:883–910. 10.1016/S0140-6736(17)31366-1