Vice President of the Nepal Hemophilia Society talks about outreach

Ujol K.C.—Vice President (Program) of the Nepal Hemophilia Society—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 and what type?

I am parent of a person with hemophilia (PWH). My son name is Shreejal K.C. He is 19 years old. He was diagnosed with factor IX deficiency when he was seven years old.

How are you currently involved with the bleeding disorder community?

I am involved as the Vice President (Program) of the Nepal Hemophilia Society.

How long have you been involved with the bleeding disorder community?

I have been involved with the bleeding disorder community since 2007. I was part of the Nepal Hemophilia Society for two terms as Board Member, one term as Secretary, one term as General Secretary and now as Vice President (Program).

What motivated you to work with the bleeding disorder community?

When my son was diagnosed with hemophilia, I saw many people with hemophilia suffering due to lack of treatment. I thought I could help these people and it motivates me to be a part of the bleeding disorders community and help give my son proper care.

Why do you think outreach is important?

I think outreach is important because it is the first step in treatment—and it’s essential for improving care. Without diagnosis, people cannot receive the treatment they need, and without an accurate number of the people affected, governments are much less likely to provide funding for treatment. Outreach is a key opportunity to help newly diagnosed patients learn more about their bleeding disorder and maintain their health.

Ujol K.C., Vice President (Program), Nepal Hemophilia Society

“Without an accurate number of the people affected [by a bleeding disorder], governments are much less likely to provide funding for treatment.”

What are some of the challenges you face doing effective outreach?

The challenges we face while doing effective outreach are: (A) Most people are not comfortable technical medical information, making it hard for us to explain the condition to people. (B) The diverse geography of Nepal made us difficult to reach all areas. (C) Government authorities were not easily convinced to help us.

What was your biggest success doing outreach?

Last year, the Nepal Hemophilia Society and the WFH started a new initiative to train Female Health Community Volunteers (FHCV) and use their support to reach out to new hemophilia patients in the country. There are close to 52,000 FHCV in Nepal, and the pilot project was to train 128 of them. The results have been encouraging, and we are trying to convince the government to help train more volunteers.

What type of activities do you do for outreach?

The Nepal Hemophilia Society and the WFH organized two outreach workshops in Nepal. The main objective of the workshops was to educate FHCV volunteers to give them the skills to help identify and manage a bleeding disorder. This is critical in Nepal, where less than 1% of FHCV volunteers know about hemophilia, its symptoms or treatment options.

Where do you do these activities?

We are doing these activities in the Kathmandu valley, in hospitals, and health care centres.

How does the WFH help you do outreach?

The WFH and the Nepal Hemophilia Society are working together to run outreach campaigns in the country. The WFH organized a regional outreach and data collection workshop. Two national member organization (NMO) leaders and one hemophilia treatment centre (HTC) doctor participated in this workshop. The WFH provides technical and financial support to raise awareness of bleeding disorders and the patient organization; build collaborative relationships with the medical community and develop strategies to diagnose new patients; build a national registry; and raise awareness among general practitioners. The WFH is also helping our society through a youth twinning partnership to develop the capacity of youth team members to help the Nepal Hemophilia Society with its outreach program.

You can send one message to the global bleeding disorder community – what would it be?

I would like to send a message to the global bleeding disorder community that research on diseases like hemophilia should be accelerated so that we can bring an end to the disease sooner rather than later.

World Hemophilia Day - April 17, 2019

Reaching Out: The First Step to Care

On April 17 of this year, our community will come together to celebrate World Hemophilia Day. The theme of this year’s big day is “Reaching Out: The First Step to Care”. For the WFH, a big part of the first step to care is the outreach and identification of undiagnosed people with bleeding disorders.

Patient outreach and identification is about finding individuals with hemophilia or other bleeding disorders—including von Willebrand disease—who have not yet been diagnosed, or whose health needs are not being met by healthcare services. These patients can be found through awareness-raising campaigns and educational activities.

You can help too! This April, show us that you care and that you are there to support the patients and caregivers in our community. Be part of World Hemophilia Day 2019 and help make a difference.