Najmul Alam—General Secretary of Hemophilia Society of Bangladesh—talked to the World Federation of Hemophilia (WFH) about the importance, rewards and challenges of conducting outreach and identification campaigns to find and support people who have a bleeding disorder, but who are not getting a proper level of care for their condition.
How long have you lived with a bleeding disorder?
I have been living with Hemophilia A since birth. At the age of 5 months, my parents assumed my condition was hemophilia because of the many little violet colored bruises and stain spots on my body that were very similar to those my maternal uncles had (who died from Hemophilia).
How are you involved currently with the bleeding disorder community?
Currently I am actively involved with the Hemophilia Society of Bangladesh as a General Secretary. I was directly involved in the 1st Survey on Hemophilia Patients Need Assessment in Bangladesh. Also, I established the first ever informal youth group and volunteer team in 2015. I am also involved with WFH Humanitarian Aid, WFH regional development, volunteer management, fund raising, chapter development, and good governance.
How long have you been involved with the bleeding disorder community?
I have been involved with the Hemophilia Society of Bangladesh and the local bleeding disorder community for a long and busy 14 years.
What motivated you to work with the bleeding disorder community?
When my younger brother died of hemophilia at the age of 22 I decided I should do something for the community so that my brother’s passing would not be in vain. My resolve was further strengthened when I had to take matters into my own hands when a physician said that I needed to have surgery to correct a surgical obstruction in my stomach—but only one hospital in my city would accept me because of my condition. Finally, the birth of my third child, and only daughter, made me want to get even more involved because I realized there is a need to do more for carriers of hemophilia.
Why do you think outreach is important?
Outreach is very important because we need to identify new patients who don’t know they have hemophilia and are suffering needlessly. When I asked members of our rural community how they knew about the Hemophilia Society of Bangladesh, the almost-unanimous answer was that one of their relatives had attended a session the society had held in their area and they recognized the symptoms of the disease in them.
What are some of the challenges you face doing effective outreach?
The government has to be involved at the grass-roots level. Although the Hemophilia Society of Bangladesh and the WFH are working to bring government on board to help with the identification and diagnosis of new patients, we do not yet have full-fledged government support. Last year, the Hemophilia Society of Bangladesh and the WFH submitted a representation to the Ministry of Health and the government of Bangladesh requesting government support on hemophilia care. I hope the government will soon be on board and will work with us closely to help those in need.
What is your biggest success doing outreach?
Our main success is simply the huge number patients we have been able to identify through our outreach campaigns. The total number of registered people with hemophilia (PWH) is now 1,717. It was less than 900 two years ago. We were able to do this thanks to structured outreach campaigns.
What type of activities do you do for outreach?
We held two parallel educational sessions to support our outreach goals. The first one was for physicians, and the other one was for patients and their families. For these type of activities, we usually invite local physicians, nurses, physiotherapists, government officials, community leaders, religious leaders, teachers, influential people, social workers, media, and also patients and family members.
Before the sessions, we put up a poster regarding the outreach program in visible locations in the area to inform people about the initiative. We also invited people though a printed invitation card. Before a session, we visited the area and met with all the local stakeholders.
I would like to thank the WFH for their support—both technical and financial—of these sessions.
Where do you do these activities?
We have organized outreach workshops in every administrative division of the country.
How does the WFH help you do outreach?
The WFH organized a training of trainers (TOT) workshop on outreach for six countries in Colombo, Sri Lanka. In this regional workshop, our society President and I participated and learned tools to run an outreach campaign. This workshop also provided a platform to learn about what other neighbouring countries are doing. The success stories from the neighbouring countries motivated us to develop an action plan and reach out to PWH who are in pain. Our WFH Regional Manager also provides guidance and support on how to reach out to new PWH. And, of course, the WFH provides financial help to conduct outreach.
You can send one message to the global bleeding disorder community, what would it be?
I would like to say to people with a bleeding disorder: please keep confidence on yourself. Never give up.