The Hemophilia Foundation of Pakistan (HFP) services the national bleeding disorders community through four chapters in Lahore, Rawalpindi, Karachi and Peshawar. HFP is very engaged across the country, but the identification rate of people with hemophilia (PWH) remains very low at only 12% of the expected rate. Increasing this number is a key challenge for the HFP—given that many areas of the country are remote and hard to access. To close this gap, the HFP applied to the WFH PACT Program—an endeavour designed to improve outreach and diagnosis and increase access to sustainable care for people with inherited bleeding disorders. One of their first successes under the Program is the launch of a national hemophilia helpline.
The helpline was developed to offer confidential resources to people with bleeding disorders (PWBDs) and their families. The free service is provided from 9:00 a.m. to 5:00 p.m., six days a week, and is managed by two trained staff selected from the community. Emergency calls are also taken outside of the regular working hours. The helpline supports callers with:
- Basic information on bleeding disorders
- Referral for treatment, care and support facilities
- Guidance and counselling
- Emergency management recommendations
- Support for complaints
Umer Ashar and Midhat Khalid are the two staff members currently manning the helpline as peer counselors. The duo—a young man and a young woman—were selected to work together to ensure that both male and female callers feel comfortable sharing their issues. Before launching the helpline, they received extensive training on the basics of hemophilia, patient confidentiality, communication skills, and referral systems. Through rotational visits to all four HFP chapters, they met clinicians, youth and women’s group coordinators, and executive board members. “Responding to a diverse range of calls is always a challenge,” says Ashar. “But after we provide guidance to the patients the feeling is so rewarding that I usually forget how challenging my job is.”