Addressing muscle pain in Haemophilia

Doctors set proposal for Government to setup three to five Haemophilia Treatment Centres in State

The Haemophilia Federation India (HFI) organised the first two-day Musculoskeletal Workshop in Hyderabad that concluded on Sunday. Around 30 physiotherapy delegates from the South attended the workshop.

Organised in sponsorship with Novo Nordisk Haemophilia Foundation (NNHF), the Southern Region MSK/Physiotherapy workshop is first of the four regional workshops, which are to be held country-wide this year as part of the Joint MSK Project of HFI and NNHF.

Dr Ramani, DME, Government of Telangana, inaugurated the workshop and other dignitaries, Dr Pamela Narayan, Project Lead and EC Member, Haemophilia Foundation (India) Dr Venkatnarayan, President, Hyderabad Haemophilia Society, Vikash Goyal, Vice President Development, HFI, were present on the occasion.

Inaugurating the Workshop, Dr Ramani said she is committed to aid all efforts being put in to support Haemophilia patients in Telangana. “I will push the proposal for setting up three to five additional Haemophilia Treatment Centres in the State,” she said.

Stating that the under-recognised part of Haemophilia treatment is Physiotherapy, she said, “The physiotherapists trained in skills to treat Haemophilia can be of use to the society at large, they can use these skills to treat general population as well for arthritis and pain management.

Therefore, the opinion that training physiotherapists for treating Haemophilia will cater to only a small section of that population should be dispelled, especially in Government.”

Addressing media Dr Pamela Narayan said that the disease is growing in India. “Only 15 per cent of the Haemophilia patients have been identified in the country and the remaining are unaware of their ailment. Haemophilia leads to deformity or death.

The medicine in case of bleeding has to be administered within 2-4 hours for it to effectively work and prevent damage. Therefore, we have requested the Telangana Government to establish three to five holistic Haemophilia Treatment Centres in Districts in addition to the existing three centres in Hyderabad at Osmania, Gandhi and Niloufer Hospitals.”

“These centres should have all the necessary facilities including medicines and physiotherapy treatment; they would be within 100 to 150 km radius for patients to seek treatment in time,” she added.

According to Dr Venkatanarayana, President, HFI, Hyderabad Chapter; Haemophilia, “Till now, there are approximately 700 Haemophilia patients identified in Telangana but, the number should be much higher, somewhere around 3,000 in the State and needs to raise awareness amongst doctors and community to identify these patients.”

“The other problem is, the factor or medicine used to treat incase of bleeding is very expensive, up to Rs 10,000 per dose and most patients can't afford the treatment. The Telangana Government has been helping by making available this medicine in Osmania, Gandhi and Niluofer Hospitals but, due to budgetary limitations these medicines are often out of stock, despite their availability with Central Drug Store,” informed the doctor.

Dr Vikas Goyal said, “The Telangana Government should allot Rs 11 crore in its budget exclusively for treatment of Haemophilia patients in the State. Physiotherapy is an inexpensive treatment for Haemophilia.” The MSK Project lead is Dr Pamela Narayan, a Global Expert on Physiotherapy with respect to Haemophilia.

The project aims to improve the physiotherapy and musculoskeletal resource for persons living with Haemophilia (PWH) in India. There are nearly 7,000 identified PWHs in Southern India and approximately 900 are registered in Hyderabad, who will benefit with the Physiotherapists getting combined MSK-Haemophilia related training in the workshop.