Haemophilia patients struggle to access treatment, face blood shortage during lockdown

The genetic disorder does not allow clotting of blood when a person gets injured and leads to uncontrollable bleeding, swelling, pain, limb and organ damage and in extreme cases even death
Storage units of a blood bank at a hospital I Prasant Madugula
Storage units of a blood bank at a hospital I Prasant Madugula

BENGALURU: Patients with haemophilia are having a tough time accessing treatment during the lockdown in Karnataka due to lack of transportation or having cops stopping them en route without understanding the gravity of their ailment.

The genetic disorder present at birth does not allow clotting of blood when a person gets injured and leads to uncontrollable bleeding, swelling, pain, limb and organ damage and in extreme cases even disability and death.

They are also in constant fear of contracting the coronavirus, being part of the vulnerable category. In addition, they also face shortage of blood as either plasma or cryo is used to treat patients. This is due to the massive drop in blood donations amidst the ongoing lockdown.

"We bleed a lot more than the average person as we do not have the clotting factor and the pain becomes unbearable. If unattended, it can lead to deformity or can even be life threatening. We store factors (medicine used for treatment) in our centre at Bhagwan Mahaveer Jain Hospital or access it at BMCRI and St. John's Medical College. Owing to the lockdown, we are unable to get transportation to these centres, bump into cops and a lot of time is lost in explaining to them what haemophilia is and why we have stepped out," said Soma Shekar, Vice President of The Hemophilia Society, Bangalore Chapter.

Getting hurt by the edge of a chair or table which happens to all of us, could prove fatal for them. At times, bleeding can take place even without any injury. The medicine is given through IV.

"During such cases, my family members may have to step out to get the medicine for me as I am not in a state to travel. At that time, cops may not be aware of this condition and try to send them back home. The golden period is lost which affects the survival rate. This period depends on the kind of bleeding and differs on a case to case basis," he added.

Some patients report good experiences with cops, who have been understanding of their situation once the patients show the ID card given by the government

Vikas Goyal, All India President of the society, said,"When I showed my card, the cops were very sympathetic towards my situation. We advise patients to come to the chapter instead of going to hospitals where COVID-19 patients are present." Premroop Alva, General Secretary of the society, said that patients in the districts are likely to face more issues in transportation than Bengaluru, adding that there are 2400-odd patients in Karnataka.

Dr Meera V, HOD, Clinical Haematology Dept, BMCRI, said, "Patients too fear coming to the hospital for replacement therapy as they could contract COVID-19. Heamophilia patients can bleed into muscles, joints, organs such as brain, stomach, intestines even spontaneously. Uncontrolled bleeding can lead to brain damage, limb damage, disability if they do not get early treatment and in severe cases, also death. They have been counselled to use icepacks immediately, rest their limbs and also elevate the affected portion using pillows. Several have learnt self-infusion and keep a stock of medicines at home, which they can buy at government pharmacies. Apart from BMCRI and St. John's which have clinical haematology departments giving tertiary care to complicated cases, district hospitals also provide treatment."

Dr Swatantra Bankar, Deputy Director, State Nodal Officer Blood Cell, said, "Patients have been given ID cards which they can show to the police and we have also informed the police department about such emergency cases and are co-ordinating with them. In Bengaluru, Uber and Ola services have been started for medical emergencies."

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