4 months of the therapy. law and health services management
In 2014, two twin brothers with average I.Q., diagnosed with Pompe disease, pleaded for use of a
new enzyme replacement therapy with Queen Mary Hospital. The new drug was not yet in the
HA formulary and the evidence for its benefit was not yet strong enough for inclusion. The
patients’ pressure group demonstrated outside the Legco for more resource allocation by HKHA.
The brothers signed the consent forms despite strong protest by their relatives and lack of
understanding of the contents. The medical doctors in charge were new to the new treatment and
were alleged to have provide excessive dosage to the brothers during the therapy. Their condition
had became worse and they passed away after 4 months of the therapy. How would you advise
the relatives of the deceased brothers?