15 June 2019 | New Scientist | 9Human genetics Drug prices
Linda Geddes Clare Wilson
EVERYONE processes food
differently — even identical twins.
An analysis of people’s diets found
that just half of our response to
glucose and 20 per cent of our
response to fat is genetic.
Tim Spector at King’s College
London and his colleagues
measured the biological responses
of 1100 people to specific foods
over 14 days, by tracking the levels
of glucose, insulin and fats in their
blood after eating. Around 60 per
cent of the group were twins.
The team found that while some
people experienced a rapid and
prolonged increase in blood sugar
and insulin in response to a given
meal, such as a high-fat, high-carb
muffin, others responded to the
same meal with a large and
sustained increase in the amount of
fat circulating in their bloodstream.
The first response is associated
with an increased risk of weight
gain and type 2 diabetes, whereas
the second is linked to an increased
risk of cardiovascular disease.
The big surprise was that these
differences were also seen among
identical twins, who have the
same DNA. By comparing their
physiological responses to the same
meals, the team estimated that the
contribution of genetic factors was
far lower than they had expected.
One possible explanation for
these differences is variation in
people’s gut microbes. Identical
twins in the study shared just
37 per cent of the same gut
microbes; in unrelated individuals
it was 35 per cent.
Variability in people’s sleep,
circadian rhythms or exercise could
also explain the differences, says
Spector. He presented the results
at a conference of the American
Diabetes Association in San
Francisco this week.
The team is developing an app to
predict the healthiest food choices
for people, following a test. ❚
How you process
food is only partially
down to your genes
“SHE’S our child, nothing else
matters – I’d lose my house
before I take her off the
treatment,” says Nina White,
mother to 7-year-old Beatrice.
Beatrice has cystic fibrosis,
a genetic condition that causes
progressive worsening of lung
function. People with the
condition currently have a life
expectancy of around 47 years.
Three years ago, Orkambi
became available. Developed
by pharmaceutical firm Vertex,
it is designed to reverse one of
the most common genetic flaws
that causes cystic fibrosis. The
drug has had mixed results in
studies but one found that it
nearly halves the rate of disease
progression, leading some
parents to want their children
to start treatment as soon
as possible.
The official price of the drug is
just over £100,000 a year. NICE,
the body that assesses the cost-effectiveness of medicines in
England, where Beatrice lives,
hasn’t recommended it for use
in the National Health Service.
So Beatrice’s family began to
pay for the drug privately, using
contributions from relatives
to cover the £8000-a-month
costs. “Everyone’s digging in.
It’s completely unsustainable,”
says White.
The cost is too high for most
of the estimated 4000 children
and adults in the UK who couldbenefit from this type of
medicine, however.
There may be a way to get the
medicine much more cheaply.
Because Vertex doesn’t have a
valid patent for Orkambi in
Argentina, a pharmaceuticalfirm called Gador is legally
making a cheaper version of
the medicine there, selling it
for about £23,000 a year. The
campaign group Just Treatment
is lobbying for the UK to utilise a
rarely used legal process – called
Crown use licensing – to suspend
Vertex’s patent and buy the
generic drug from Argentina.
Alternatively, the patent
could be circumvented by
beginning a large clinical trial,
in which there is no placebo arm
and every participant receives
the generic medicine.
However, Vertex says getting
around its patent in such ways
is unfair. “Companies who claim
to be able to produce a product
similar to Orkambi have not
had to bear the cost of drug
discovery and development,”
the firm said in a statement.
“It has taken 20 years and
billions of dollars to fund
our research.”
Public health minister Seema
Kennedy told the UK parliament
on Monday that the government
is looking at its options, but that
Crown use licensing “is not
something any government
would consider lightly”.
In the meantime, there is
a third option: for families to
club together to buy the generic
drug directly from Argentina.
A Cystic Fibrosis Buyers Club has
recently formed and hopes to
get a bulk purchasing discount,
bringing the annual price per
person to £18,000.
Even then, many people
won’t be able to afford the lower
price. “It’s not a fair solution,”
says Diarmaid McDonald of Just
Treatment. “Setting up buyers’
clubs is a desperate act.” ❚Families turn to Argentina
for cystic fibrosis drug
FA
CUNDO^ ARR
IZABALA
GA
/EPA/SHUTT
ER
ST
OCKUK campaigners
protesting for access
to Orkambi in 2017£
The monthly cost of Orkambi,
a drug for cystic fibrosis