CHF are calling for medicines prescribed to children to be specifically developed for children with age appropriate formulation.
On 3 April, CHF held a drop-in session for MP’s at Portcullis House, London and invited MPs to engage in this important initiative.
MPs had the opportunity to speak at first hand to a family and their heart child, who have experience of using ‘off-licence’ heart medication.
Join our initiative: What you can do
Most medicines are developed for adults. And when medicine is being developed it is tested on adults.
Sometimes children need this medicine too but as it hasn’t been tested on children, it will be given to them on a ‘named child basis’ or an ‘off-licence basis.’ As children are much smaller than adults, they will need a smaller dose, so a tablet will probably have to be cut into pieces, crushed or put into liquid form for a child.
This means that doses are often estimates and may be inaccurate as this short animation explains.
The LENA Study involved investigators and clinicians from eight European countries, all leading experts in their fields including the Children’s Heart Federation (CHF) an experienced patient advocacy group who represented the views of patients and their families across Europe.
CHF are hoping that the successfully completed LENA Study will mark a first step in developing additional medicines in the form of mini-tablets which will ultimately help tailor drug developments to the specific needs of young patients.