Financial support needed to help hemophiliacs live a normal life

Financial support needed to help hemophiliacs live a normal life

JAKARTA (JP): Widya was shocked to see her 11-month-old son
Eric, who cut his lips after making several unsuccessful attempts
to stand on his feet, hemorrhaging.

"He was bleeding profusely, like a running tap. I panicked and
rushed him to hospital where he was given blood transfusion," she
said. An official at the hospital referred her to Cipto
Mangunkusumo General Hospital (RSCM) to do a blood test for her
son.

"My heart sank when the doctor at RSCM said that Eric had
hemophilia. A disease which requires expensive and lifelong
treatment," she said.

This happened 11 years ago and today Eric is no different from
other children.

Eric is among the thousands of hemophiliacs in the country.
There is no accurate data on the number of sufferers of this
fatal disease.

The Indonesian Hemophilia Foundation predicted that one in
10,000 males is a hemophiliac, meaning there are about 18,000
hemophiliacs in the country; some 1,000 of whom are in Jakarta.

"Many parents don't take their children to doctors for
examination, making it difficult to monitor the number of
hemophiliacs and fatalities," said Moeslichan, who is chairman of
the RSCM's Hemophilia Comprehensive Care Team.

RSCM is currently treating 170 hemophiliacs.

He said with proper treatment, hemophiliacs could live like
normal people and have the same life expectancy.

Hemophilia is an inherited blood disorder due to a deficiency
in blood clotting factors. It affects males almost exclusively.
The disease is characterized by the delayed clotting of the
blood, making it difficult to even control bleeding due to a
minor injury.

"Most parents only become aware of this health problem when
their sons are circumcised," he said.

There are two types of hemophilia. The most common is
hemophilia A, which is caused by a deficiency of Factor VIII, and
hemophilia B, which is due to the absence of Factor IX. Both
factors are required for normal blood clotting.

This sex-linked disease is caused by a defective gene on the X
chromosome. So males, with XY chromosomes, who inherit an X
chromosome with the defective gene will likely develop the
disease, while females, with XX chromosomes, would become
carriers and could transfer the gene to their offspring. Very
rarely, a female with hemophilia is born, even if her mother is a
carrier and her father a hemophiliac.

However, Moeslichan also pointed out that gene mutation due to
viral infection, radiation and pollution could trigger
hemophilia.

Symptoms of hemophilia include bruises, spontaneous bleeding,
and bleeding into joints accompanied by pain and swelling.
Untreated injuries can lead to bleeding to death or decaying of
tissues around the wound, and bleeding into joints can cause
paralysis.

Comprehensive health check

Moeslichan said Factor VIII and Factor IX could be supplied
through intravenous injections of cryoprecipitate or Factor VIII,
which is concentrated and extracted from blood donated to
hospitals.

Doctors will administer the first few injections, but will
later teach parents or the patients how to do it themselves at
home.

As for prevention, Moeslichan stressed the importance of a
comprehensive health check prior to marriage, and antenatal
tests, to help detect irregularities, during the 12th week of
pregnancy.

"If the fetus is diagnosed with hemophilia, the couple can
decide whether to abort it," he said.

People with hemophilia are advised to cycle and swim to
improve their stamina, and strengthen their muscles and joints. A
patient is advised to wear a tag identifying him as a hemophiliac
and his blood type to enable proper treatment during an
emergency.

The doctor, who is also a professor at the University of
Indonesia's School of Medicine, admitted that treatment for
hemophilia was very expensive and sufferers would have to rely on
it for the rest of their lives.

For routine treatment, adult hemophiliacs need some 24 bags of
cryoprecipitate every week, each worth Rp 41,000. There is also
an on-demand treatment for emergency cases, such as injuries with
prolonged bleeding or for tooth extraction.

Concerns over funds was also aired by chairman of the
Indonesian Hemophilia Foundation Erlan Taralan.

The foundation requires some 40,000 bags of cryoprecipitate
annually for which it can only cover 15 percent of the total
cost. Thirty percent is covered with funds derived from the
Social Safety Net (JPS) and the remaining by RSCM and other
institutions.

"We are turning to the public for funds because next year
there will be no allocation from JPS," he said.

If volunteers donate their blood, why are patients burdened
with the cost? A staff at RSCM's Blood Transfusion Division, Agi
Herlina, said the cost of each bag was set to cover blood
management, which includes tests, donation, processing, handling
and distribution.

-- Maria Endah Hulupi