Sponsor a Child and Save a Life - International Diabetes Federation

EE
F
DAT
I TO
URE
IAL
Sponsor a
Child
and
Save a Life
Graham Ogle and Martin Silink
The village, in Papua New Guinea, where Jacklyne lives was
opened up to the outside world in 1949, and even today
requires a four-wheel drive route along precipitous mountain
roads to access it.
Families of children
with diabetes in
developing countries
are facing an
impossible situation.
In these regions, the
full cost of managing a
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child with this
condition is higher
than the average total
annual income.
Consequently, children
with diabetes
frequently die quickly.
To help alleviate this
situation, IDF has
commenced a
sponsorship
programme aiming to
support children with
diabetes in developing
countries. The
programme, Life for a
Child, was launched
at the 17th IDF
Congress in Mexico
City in November
last year.
Diabetes Voice • Volume 46 • June • Number 2/2001
F E AT U R E
Children with Diabetes
in Developing Countries
Die Too Soon
In most developing
countries, families of
children with diabetes, such
as Jacklyne’s, need to pay
for most or all components
of care. The full cost,
excluding doctor’s fees, of
managing a person with
type 1 diabetes is US$350700 per year. Many
children receive insulin
intermittently or in too low
a dose. They cannot afford
glucometers or testing
strips, and so are unable to
control their blood sugar
levels. Often, doctors are
not highly skilled in
managing children with
diabetes, and usually there
are no diabetes educators,
dietitians or social workers.
J
acklyne is from the
highlands of Papua
New Guinea. She is
nine years old, and was
diagnosed with type 1
diabetes in 1997. The district
where her village lies was
opened up to the outside
world in 1949, and even
today requires a four-wheel
drive route along precipitous
mountain roads to access it.
The area has no electrical
supply or telephones, and the
health centre has no
experience with diabetes and
is frequently without even
basic medicines. The family
has been forced to live in
poverty with relatives on the
edge of larger highland
centres, using expired
insulin.
Jacklyne was thin and unwell,
with visual disturbances and
Diabetes Voice • Volume 46 • June • Number 2/2001
overall in a very perilous
situation. She was unable to
monitor herself. However,
with funds from the Life for
a Child programme we were
able to fly her and her father
to Port Moresby for
education. She is now in
good control, confidently
administering her own
injections, performing blood
glucose monitoring at home
and feeling much healthier.
Children with diabetes die
too soon or, at the very
least, achieve only very
poor control (with HbA1c
around 12 to 14 percent or
more). Quality of life is
poor, with constant
excessive drinking and
urination, and generally
feeling unwell. Often these
children never finish
school. They find it hard to
get married. Complications
develop at a young age,
leading, in many cases, to
blindness, kidney failure
and severe neuropathy.
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F E AT U R E
In contrast, people with
diabetes in developed
countries have access to all
equipment and supplies
required to manage their
diabetes well. Specialist
medical attention, diabetes
education, dietetics and
social work services are all
provided. Most children
achieve good control, lead a
normal lifestyle, and are in
a good state of well-being.
The risk of complications
at a young age is very low.
Sustainable Insulin
Supply Needed for
Developing Countries
The previous issue of
Diabetes Voice focused on
the problem of providing
emergency supplies of
insulin to victims of
disaster. In addition, a
sustainable programme for
supplying insulin for
people with diabetes in
developing countries is
sorely needed. It is the
chronic shortage of
insulin that still poses the
greatest problem.
According to
Dr Jean-Claude Mbanya,
Consultant Physician at
the Yaoundé University
Hospital in Cameroon,
IDF Vice President and
Chair of the IDF Task
Force on Insulin, “... the
real problem lies in the
widespread, chronic
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shortage of insulin that
poses a serious threat to
the developing countries
of the world. International
economics still determines
who should live or die,
while the world watches
on.” (Diabetes Voice,
4/1999, vol 44, 22-25).
Dr Mbanya also stated,
“Apart from problems in
supply and distribution,
people with diabetes in
developing countries [...]
simply cannot afford the
high cost of insulin,
syringes and needles.”
Insulin distribution
programmes already exist.
Australia’s ‘Insulin For
Life’ programme, for
example, is of
considerable benefit, but
can only pass on limited
supplies. The IDF South
and Central American
Region has done much in
cooperation with Rotary
International, and other
countries have shown
interest in establishing
similar projects.
Western Pacific
Initiates Steps
The Life for a Child
Programme began when
the IDF Western Pacific
Region (WPR) embarked
on creating a sustainable
sponsorship programme
aimed at supporting
Jacklyne is now in good control, confidently administering her
own injections, performing blood glucose monitoring at home
and feeling much healthier.
diabetes centres in
developing countries.
Ms María L de Alva, former
IDF President, proposed this
concept to the WPR Council
meeting in Sydney, Australia,
in October 1999, when it
was unanimously endorsed.
The IDF Consultative
Section of Childhood and
Adolescent Diabetes, chaired
by Professor Martin Silink,
was asked to develop the
programme.
Outline of Programme
The Consultative Section
on Childhood and
Adolescent Diabetes
proposed that the best way
to administer support
through sponsorship would
be to get a number of
sponsoring individuals or
families together to
support a diabetes care
centre in a developing
country. One of the
benefits of the sponsorship
programme would be to
Diabetes Voice • Volume 46 • June • Number 2/2001
F E AT U R E
provide education and
technical support for
health professionals. It
was proposed that not
only funds would be
provided to the centre,
but also supplies such as
insulin and syringes as
well as blood glucose and
HbA1c monitoring tools.
The programme would be
implemented by the most
well-established nongovernmental
organization in the
recipient country. The
national diabetes
association would also be
required to assist.
Health outcomes of the
children and general
progress at the centre
would be monitored with
the assistance of the
International Society for
Paediatric and Adolescent
Diabetes (ISPAD). Best
Practice Financial
Guidelines would be
followed, and the
programme regularly
evaluated and audited. It
was hoped that this model
would prove selfsustainable and applicable
for other countries.
The non-governmental
humanitarian development organization,
HOPE worldwide,
added its assistance in
January last year, when,
thanks to added support
from industry partners
and Diabetes Australia,
the programme was
developed and
implemented. Funds were
approved and sent to three
pilot countries, Papua
New Guinea, Fiji and
the Philippines, at the
beginning of this year.
Pilot Programme now
Implemented in Three
Countries
Fiji and Papua New Guinea
were chosen because they
both show increasing
numbers of children with
type 1 diabetes. Management
of these children has been
difficult until now, with
some children perishing and
many others in very poor
The school in Jacklyne’s village
Diabetes Voice • Volume 46 • June • Number 2/2001
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F E AT U R E
syringes. There are only a
couple of diabetes
educators in each country,
and they do not have
paediatric training. Papua
New Guinea does not
have any dietitians at all
working in hospitals.
Both countries have high
rates of type 2 in young
adults, and it is likely a
number of children and
adolescents have
unrecognized type 2
diabetes. These children
are in urgent need of
diagnosis and
management.
Jacklyne was thin
and unwell, with
visual disturbances
and overall in a very
perilous situation.
control and developing
complications. There is a
free basic health system in
each country, but
resources are very scarce.
In Papua New Guinea,
insulin is provided by the
government, but
glucometers and testing
strips have to be privately
purchased, at premium
prices. In Fiji, testing
strips are only available
intermittently in limited
quantities in some
hospitals. Families need to
buy their own needles and
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The capital of the
Philippines, Manila, has
12 million people. There are
about 120 children with
diabetes in Metro Manila
and surrounding districts.
The three centres looking
after these children provide
expert teaching but are
generally unable to supply
insulin, glucometers, testing
strips, urine strips, HbA1c
tests, or syringes and needles.
Families need to purchase
these and limited support is
available from a few charities.
A recent study of children
from poor families showed
that 40 percent of children
were frequently missing
insulin injections due to
financial difficulties, and that
none were having regular
HbA1c tests.
How You Can Help
To become a sponsor, you
can access a sponsorship
form on the IDF website
www.idf.org, or e-mail
the programme
coordinator,
Ms Anne Rogers, on
[email protected]
for one. You can also fill
out and fax the form on
the following pages to
+61 (0)2 9660 3633.
The cost is US$1 per day
($365 per year). Payments
can be made by credit
card monthly, quarterly or
annually. You will receive
regular updates on the
progress of the centre you
are supporting, with
photographs and stories
on selected children.
Dr Graham Ogle is the
Programme Manager of
‘Life for a Child’ and
Regional Director (South
Pacific), HOPE
worldwide.
Professor Martin Silink is
Director of the Ray
Williams Institute at the
Children’s Hospital,
Westmead, Australia,
Chair of the IDF
Consultative Group on
Childhood and Adolescent
Diabetes, and IDF Vice
President.
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