TOI : Thalassemia patients hit by high drug costs : Sept 10, 2007

Thalassemia patients hit by high drug costs
Rajiv Sharma I TNN

Mumbai: HS Aurora is a harried parent these days. His six-year-old daughter
Jasreet is a thalassemia patient, who was diagnosed with the condition when
she was one year old.

    "It is an extremely difficult situation for such a small child, and
taking a blood transfusion every 15 days is a nightmare for all of us," he
said. The little girl, who studies in the second standard, has been quite
brave about it, helped by the encouraging staff at the blood bank of the
BSES Hospital inAndheri.

    Thalassemia is basically a blood disorder in which the body is unable to
manufacture blood on its own and the patients need regular transfusions. But
thalassemia patients have to depend on certain drugs to reduce the iron load
on their body that are a result of regular blood transfusions. And therein
lies the catch.

    Aurora said his daughter's doctor has told them that they would have to
put the girl on an injection named Desferal, which has to given everyday for
four to eight hours. "Apart from the fact that this is quite painful, there
is the cost factor. We are hoping steps are taken to make this less
expensive," he said.

    Indeed, countless thalassaemia patients are today finding themselves
unable to afford the high cost of drugs. Many of them from underprivileged
sections are even discontinuing their treatment as a result, leading to a
higher rate of fatalities.

    According to Vinay Shetty, who works with a support group known as
Citizen, efforts have been made to make blood transfusions free for
thalassaemia patients from underprivileged sections, so that they do not
have to pay for every session. But the key factor in the treatment still
remains the drugs needed to lower the iron level.

    "The next step is to make the iron chellating drugs available either for
free or at a cheaper rate, since they are critical for the patient's
survival," he said. Shetty said he has already been corresponding with the
state government on this issue and the matter is under consideration.

    Repeated blood transfusions results in an iron overload on the
thalassemia patient's body, which can result in multi-organ failure.
Patients therefore need iron-chelating drugs, which reduce the overload. At
present, there are two ways of administering such drugs: one is an injection
known as Desferal while the other one is a tablet known as Kelfer.

    Shetty said these drugs increases the life span of a patient by about
10-15 years. He said he has especially requested that Kelfer should be made
free of cost. "Taking this drug can cost about Rs 1,000 per month for the
patient, and hence we have requested that this should be given free," he
said. Only those who do not respond to it need to take the injection known
as Desferal, which needs a pump.

    While the injecting pump itself costs Rs 20,000, the recurring cost of
the medicine is about Rs 15,000 per month and a lot of patients are not able
to afford this. "There are cases where patients simply stop taking the drug
after some time, and they do not survive beyond a few months," Shetty said.
Again, the effort is to request the state government to subsidise the cost
of this medicine and find sponsors for poor patients, he said.

    rajiv.sharma@timesgroup.com
Publication:Times of India Mumbai; Date:Sep 10, 2007; Section:Times City;
Page Number:4

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