Spending on health cannot increase indefinitely.
Despite best interests, there will always be limits on the available budget
and the ability to deliver health services.
With a limited budget, whenever a new medicine is introduced,
something else already being paid for will need to be stopped
or be changed to make budget available for the new medicine.
This is known as “opportunity cost”.
To make sure these decisions are fair and consistent,
UK decision-makers use a process known as Health Technology Assessment, or HTA.
A “health technology” is a medicine, product, intervention, or service aimed to improve health.
A Health Technology Assessment summarises information about the medical, social, economic, and ethical issues
related to the use of a health technology;
and examines the short- and long-term consequences of using the new health technology.
It balances the costs of the health technology
against the benefit it brings to patient care.
It aims to do this in a systematic, transparent, unbiased, robust manner.
At the end of this process,
HTAs aim to identify which health technologies are of most value to society and should be invested in.
While this process works quite well for common conditions,
it can be difficult to apply to rare diseases.
This is due to several factors.
Firstly, as rare diseases individually affect a small patient population,
information vital to health technology assessments may not exist.
There may be limited understanding about disease progression and the patient care journey,
and even the number of patients in the country may be unknown.
Secondly, the cost per patient per year for a medicine developed for a rare disease
is usually significantly more expensive than a medicine developed for a more common condition.
As a result, from an economic standpoint,
the benefit brought to a patient is outweighed by a high price.
Due to these and other factors,
the devolved nations in the UK all look to include more of the patient voice
when evaluating health technologies for rare diseases.
To find out more about UK health technology assessments and how patient groups can get involved,
sign up to Findacure’s online portal via
portal.findacure.org.uk
