PANJIM: The absence of a dedicated centre for all blood disorders has posed a challenge to all sufferers in the State.
This was pointed out by Ashish Kavthankar of the Haemophilia Society, Panjim Chapter, on the sidelines of Purple Convention on Haemophilia and Blood disorders held at a city hotel in Panjim on Thursday.
“Today, Goa Medical College serves as a treatment centre, accommodating individuals not only from Goa but also from bordering States. Presently, 67 registered patients from Goa, under the Haemophilia Society, Panjim Chapter, affiliated to the Haemophilia Federation of India, seek care,” Kavthankar said adding that without a Haematology Department, patients often have to travel to Mumbai or Vellore for specialised treatments.
This situation extends to patients from neighbouring States, emphasising the need for enhanced medical infrastructure and specialised facilities to serve a broader regional population. Advocacy for comprehensive healthcare could significantly benefit individuals affected by blood disorders in both Goa and the surrounding regions.
Haemophilia Federation of India president Premroop Alva told O Heraldo that there was limited awareness about Haemophilia. As per the data, there was one haemophiliac in every 5,000 individuals. By that calculation, Alva felt there would be around 300 cases in Goa.
“Haemophilia is a blood protein deficiency where the blood does not coagulate. The option to live a normal life is there but the treatment is very expensive.
The cost per injection could range anywhere between Rs 10,000 to Rs 30,000 depending on the weight of the person,” Alva said.
In Goa, there were seven patients taking injection from the GMC of a drug called Hemlibra, which costs Rs 55,000 and it had to be taken fortnightly. It was given by the government as essential treatment. Alva said he had requested the State government for a dedicated treatment centre for haemophilia, sickle cell and thalassemia but nothing had been forthcoming as yet.
At the ongoing convention, Minister for Social Welfare Subhash Phal Desai stressed the need for more affordable and accessible treatments, setting the tone for the event.
Former Chief Minister and Margao MLA Digambar Kamat, highlighted the commendable work done by the Department of Social Welfare and the Commissioner’s office. His emphasis on inclusivity resonated, underlining the importance of collaborative efforts in shaping a more accessible future.
Guruprasad Pawaskar, State Commissioner for Persons with Disability shared insights into the collaborative efforts of various NGOs, making Purple Fest a success.
