Living with Haemophilia: From fear & burden to a way out

The theme for World Haemophilia Day 2023 is "Access for All: Prevention of bleeds as the global standard of care". A round table discussion titled, "Haemophilia and its growing burden: need for joint efforts of all" was organised by the Hospital Services Management of the Department of Health and Roche Bangladesh on 16 April at Hotel Intercontinental in the capital, observing the World Haemophilia Day and the discussion was focused on the theme of it.

Haemophilia is a rare disease in which the patient's blood has trouble clotting when bleeding occurs.

At present, it is known that around 3,000 identified patients are suffering from this disease. Although rare, the number of patients affected by this disease is expected to increase with proper diagnosis.

Patients suffering from this disease suffer from various health complications including risk of paralysis. Thus, the family of the patient has to face a huge burden of various financial and social costs.

The symposium has been organised to reduce the financial and social burdens of this disease and to raise awareness about the disease.

Professor Dr Mazharul Hoque, line director, Hospital Services Management, Directorate General of Health Services, presided over the discussion titled "Through prophylactic treatment, Haemophilia can give a beautiful and normal life to the patient."

In his speech, he assured that he would do his best to ensure the treatment of the patients on his behalf.

Md Osman Bhuiyan, joint secretary (Disability), Ministry of Social Welfare attended the meeting and delivered a speech.

He appealed to all sections of the society to come forward and highlighted the importance of working together with other ministries on Haemophilia.

In addition, Prof Dr Md Salahuddin Shah, chairman, Department of Haematology, Bangabandhu Sheikh Mujib Medical University (BSMMU), said in his speech that the main objective of this roundtable should be to ensure that no patient are lost without treatment for bleeding disorder. Besides, one stop service system should be created.

Prof Dr Akhil Ranjon Biswas, head of Department, Department of Haematology & BMT Unit, Dhaka Medical College Hospital (DMCH), said that the cost of prophylaxis treatment is close to that of on-demand treatment.

"Prophylaxis treatment is the best treatment, as it will bring more benefits to the patient and society," he said.

New innovative treatment methods for Haemophilia were discussed in the event, including prophylactic treatment methods.

This treatment can give the patient a beautiful and normal life. However, this treatment method is quite expensive.

Meeting these expenses requires the combined efforts and support of all for the patients and their family. Therefore, not only the patient and his family, but also the role of various members of the society, is discussed to meet the medical expenses of the patients.

This medical cost barrier to prophylactic treatment is depriving many patients of a healthy life, said speakers.

The programme was moderated by Dr Supriya Sarkar, programme manager, Hospital Service Management, DGHS and Dr Farzana Hasan, head of Integrated Strategy and Country Medical Director of Roche Bangladesh delivered the opening speech.

Roche Bangladesh Country Manager and Head of Finance and Compliance Mr Md Gazi Moin Uddin Ahmed; Prof Dr Jahangir Alam, secretary general, Bangladesh Paediatric Society and director, Bangladesh Children's Hospital and Institute; Dr M Morshed Zaman Mia, head of Department of Haematology, Rajshahi Medical College Hospital; Brigadier General (retd) AKM Mustafa Abedin, president, Haematology Society of Bangladesh; and Md Nurul Islam, president, Haemophilia Society of Bangladesh were also present at the event.