PACT case study: national hemophilia helpline launched in Pakistan

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.”

The National Hemophilia Helpline was launched on World Hemophilia Day this year. HFP produced a brochure which was widely distributed to advertise the free telephone service. A digital version of the brochure was posted on social media to maximize exposure to the local bleeding disorders community.

Since the helpline’s launch five months ago, the service has fielded over 1,150 calls on topics such as new patient registration, treatment availability, hemophilia treatment centre (HTC) locations, counselling, and complaints. It has also made referrals for HFP chapters and various HTCs. One caller named Zahra—whose son has hemophilia—had this to say about the service: “My son [was injured] while traveling…thanks to the national hemophilia helpline, we received timely guidance about the nearest HTC to deal with the emergency.”

Abida Khan, mother of a PWBD

I’m grateful to the [helpline staff], who referred me to the hospital for the registration of my newborn. This was my first child and getting timely guidance from the relevant person was very helpful.

Masood Fareed Malik, President of HFP, said that the National Hemophilia Helpline initiative plays a vital role in improving the lives of the local bleeding disorders community. He mentions that the fundamental concept of the endeavour—where individuals from the same community assist their peers directly—always has a positive impact. “The National Hemophilia Helpline initiative has enhanced community outreach,” he explains. “It has ensured that PWBDs receive accurate information and better referral services that will contribute to better overall treatment, care and support services. This will enhance the quality of life for our PWBDs.”

The WFH will continue to support Pakistan in improving access to treatment across all provinces in the country. In 2019, the WFH supported the HFP’s efforts to develop a 2021-2025 strategic plan. Pakistan was enrolled in the WFH PACT Program in 2021 based on a national access plan drafted from the HFP’s 5-year strategic priorities.

The PACT Program is supported by funding from CSL Behring, Pfizer, Roche and Sanofi Genzyme, our leadership partners, and Biotest, Grifols, and Sobi, our collaborating partners.