WFH NETWORK

Outreach and identification efforts drive results in Indonesia

Patient outreach and identification is a key activity for the WFH. While there are thousands of people around the world who have been diagnosed with a bleeding disorder, there are thousands more who have a bleeding disorder, but aren’t aware of the nature of condition, and are suffering needlessly.

In Indonesia, an organized system of outreach and identification is helping to make a difference in people’s lives. The results have been encouraging: Cipto Mangunkusumo Hospital has seen an increase in bleeding disorder cases—believed to be driven by an increase in awareness.

“There is an increase in the number of patients due to the increase of awareness. Now, [patients] are aware that we can make their life better,” says Aryadi Kurniawan, MD, Cipto Mangunkusumo Hospital.

Cipto Mangunkusumo Hospital has been successful thanks not to a single outreach and identification tactic, but rather, an integrated campaign that works at several levels. Medical professionals start with current hemophilia patients and contact their families to see if other members might have bleeding disorder symptoms. If they do, those people are invited to take tests to conclusively determine if they have a condition or not.

Djumhana Atmakusuma, MD, President, Indonesia Society of Hematology and Transfusion Medicine

“If [this model] works in Jakarta then we can do it in the other 33 provinces [in Indonesia]. The big thing is to start small but do it now.”

The hospital also leverages its physician network to get the word out. This involves educating healthcare professionals about the symptoms of hemophilia and other bleeding disorders. Unsurprisingly, patients and their parents have also become involved in the process. Together, everyone helps spread the word by telling people in their network about what to expect to see in a person who has a bleeding disorder.

Outreach and identification campaigns also include the distribution of physical material. Cipto Mangunkusumo Hospital distributes brochures, posters, and educational pamphlets created by local organizations and by the WFH to people who might know someone with a bleeding disorder. Pamphlets are also given to people who pass through the hospital in the hopes that the knowledge will make its way to someone who needs it.

“If [this model] works in Jakarta then we can do it in the other 33 provinces [in Indonesia],” explains Djumhana Atmakusuma, MD, President, Indonesia Society of Hematology and Transfusion Medicine. “The big thing is to start small but do it now.”

To see the outreach and identification efforts being done by the Cipto Mangunkusumo Hospital, please watch the video above or on YouTube.

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 these to support the patients and caregivers in our community. Be part of World Hemophilia Day 2019 and help make a difference.