Nepal | July 05, 2020

Haemophilia patients lack medicines to plug bleeding

The situation has worsened after movement of international flights was disrupted

Sabitri Dhakal
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Kathmandu, April 22

Yubaraj Kattel has been bedridden for the past few days. His joints and left knee are swollen. And he feels pain in hip joint as well.

“If this situation persists, I may not survive,” said 30-year-old Kattel, a resident of Kaushaltar.

Kattel suffers from haemophilia, a disorder in which blood does not clot properly, causing prolonged bleeding.

There is no cure for haemophilia. However, there are medicines to prevent and treat prolonged bleeding. But the lockdown, which began on March 24, and suspension of commercial flights have affected the supply of medicines for patients like Kattel.

“We need to take medicines lifelong. But we have not been able to get them now. This is a life-and-death situation for us,” said Bed Raj Dhungana, a haemophilia patient and former president of the Nepal Haemophilia Society.

People suffering from haemophilia bleed for a period longer than usual even if they suffer minor injuries. The bleeding can also occur from gums and nose, while internal bleeding causes joints and muscles to swell.

People suffering from haemophilia bleed for a longer period because they do not have enough protein factors in their blood to help clotting. This may lead to other deformities in some patients.

Keshav Karki, 46, for example, has been using crutches to walk, thanks to haemophilia. He travelled to Okhaldhunga from Kathmandu before the lockdown. He can’t travel to Kathmandu amidst the lockdown and he has run out of medicine. He has been taking pain killers to relieve the pain. “If I don’t get proper medicines soon, my health condition will further deteriorate,” said Karki.

There are around 3,000 haemophilia patients in the country, according to Navin Chandra Dhungel, president of the Nepal Haemophilia Society, which was formed to provide comprehensive care to people with haemophilia and to unite them into a community to provide self-help and mutual support.

Haemophilia patients are given anti-haemophilic factor in the form of an injection. The World Haemophilia Federation provides around 1,500 vials of the factor per year to Nepal Haemophilia Society for free. Each vial contains 500 to 1,000 units, or doses, of the factor and each patient needs 1,000 to 1,500 doses of the factor depending on severity of bleeding.

“These factors were in short supply even before the lockdown. But the situation has worsened after movement of international flights was disrupted. Worse, we cannot find these medicines at drug stores here,” said Dhungel, adding, “Arrangements are being made to bring the medicine from India, but it will take 15 days to a month.”

The anti-haemophilic factor provides a lifeline to haemophilia patients. But if they fail to fetch them on time, health condition can worsen rapidly.

“A week ago, my son had joint pain and we somehow managed to get the medicine from the society,” said Pratiksha Thapa, mother of a seven-year-old haemophilia patient. But the stock of medicine has evaporated. And she is looking for more, but to no avail.

“He is feeling pain in his joints again and he can’t move. We need to carry him even to go to the toilet. He is also suffering from nosebleeds now,” Thapa said.

Most of the haemophilia patients who lack protein factors VIII and IX suffer severe bleeding, according to Niraj Kumar Singh, a consultant haematologist at Bir Hospital. “Bleeding can occur any time. A mild injury too can put their lives at risk or lead to deformity,” said Singh, acknowledging shortage of medicines to treat haemophilia in Nepal.

At times, patients are given plasma therapy for treatment.

“As there is shortage of blood these days, the treatment has become challenging,” said Singh. “If there is gastro intestinal bleeding or bleeding in urine in high volume, then patients can lose their life. In severe cases, these patients can also suffer from brain haemorrhage.”

A version of this article appears in e-paper on April 23, 2020, of The Himalayan Times.

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