NMO profile: supporting the community in Libya

The following answers from the NMO have been edited for clarity.

What are your vision and mission?

Our vision is to achieve comprehensive healthcare for all people with bleeding disorders (PWBDs) in Libya, ensuring they receive the necessary support to be able to enjoy a good quality of life. We are committed to advocating for increasing the capacity and efficiency of the medical and administrative personnel involved in the care of PWBDs. We are also focused on educating PWBDs and raising awareness about bleeding disorders in the health sector, and in society at large. Our goal is to empower PWBDs to lead normal lives in Libya.

What are the challenges your NMO faces?

We face daily challenges due to a lack of awareness about the nature of bleeding disorders, especially from healthcare providers in their interactions with PWBDs. We constantly strive to correct this by offering advice to prevent simple mistakes that could lead to severe complications for PWBDs. Additionally, we deal with the overprotective approach parents sometimes take with their children who have bleeding disorders, which, although well-intentioned, creates psychological pressure on the young PWBDs.

We are overcoming these challenges through continuous communication with the Ministry of Health and other relevant authorities. At times, we have even worked with authorities to help them facilitate certain administrative procedures to help PWBDs access treatment in line with the law. We also help PWBDs and their families stay in touch by creating groups on social media platforms, and making phone calls and visits. Our aim is always to offer personal and advisory support to build a strong and cohesive community

How would you describe your experience collaborating with the WFH?

We are very happy to be part of a global family. Thanks to the WFH, we have learned how to advocate for our rights and find solutions to our country’s situation. Some of our members have also had the benefit of attending the WFH 2023 Comprehensive Care Summit and the 2024 WFH World Congress, and have acquired invaluable learnings through those experiences. Through the Hemophilia Eastern Mediterranean Network (HEMNET) and other regional events, we have interacted with doctors and other NMOs in our region and we were able to exchange experiences and advice.

Which WFH programs have been the most impactful for your community?

Unfortunately, given that WFH travel to Libya is currently difficult, we aren’t part of many WFH programs. One of our government labs joined the International External Quality Assessment Scheme (IEQAS) this year which we hope will help improve the accuracy of diagnosis for our patients. This is a big step for us. We have also benefitted from participating in WFH events and from WFH educational materials. Libyan healthcare practitioners have also taken part in some WFH regional training events.

What was your main achievement in the last year?

We have five achievements from the past year that we are very proud of:

1. We established a database to register PWBDs across Libya, enabling us to stay in contact with them wherever they are
2. We ensured the availability of treatment in remote areas by coordinating with nearby healthcare facilities, assisting them in resolving issues to support proper care for PWBDs
3. We helped facilitate easy access for patients to hemophilia clinics, and we also helped reduce wait times for PWBDs to visit doctors
4. We helped provide treatment in several cases where PWBDs who were admitted to the intensive care unit with severe bleeding episodes. This prompt and effective medical intervention contributed to saving their lives.
5. We collaborated with health authorities by engaging with officials and administrators in the healthcare sector. In this way, we were able to agree on a mechanism to ensure the continuous availability of treatment, avoid supply shortages, and fairly distribute treatment products.

We were able to accomplish all of this despite many challenges, including the difficulty of moving and traveling between cities due to financial costs, the lack of necessary treatment in certain cities because of frequent supply interruptions, and the general lack of awareness about how to treat PWBDs.

We have learned many lessons along the way. For example, we have to involve our community members as much as possible. We also need to work harder to engage youth, parents, women and all PWBDs more actively as regards awareness and education about bleeding disorders. We also need to set some strategic goals for our meetings with decision-makers, so they are more focused, more effective, and yield better results.

Would you like to share a story of a PWBD who benefited from your collaboration with the WFH?

Here is a story from one of our members:

My only son has hemophilia and suffered from complications since childhood, experiencing recurrent bleeding in his left knee due to inadequate access care. At the age of sixteen, he had a severe bleeding episode in his knee, and he spent most of his time bedridden due to the pain. This posed a significant challenge for us due to the difficulties in accessing treatment in Libya. For three years, the crisis continued. In 2022, the Libyan Hemophilia Association made significant efforts to advocate for improving the availability of clotting factor concentrates (CFCs) in hospitals.

Getting access to CFCs thanks to our NMO had a major impact on my son’s condition. After receiving treatment, his condition improved and the bleeding in his joint stopped. He subsequently underwent a minor surgery under the supervision of specialised surgeon and other health care professionals, with close follow-up from the Libyan Hemophilia Association. Thankfully, with intensive physical therapy, my son regained his ability to move normally.

Today, because of the support provided by the WFH and the guidance we receive from the Libyan Hemophilia Association, we have come to realize that managing bleeding episodes is not solely dependent on clotting factor. Light exercise and swimming play an important role in improving my son’s quality of life and in maintaining the health of his joints, preventing potential complications.
—Parent of a boy with hemophilia

Do you have a special message for the global bleeding disorders community?

We are grateful to be part of this wonderful community. We are keen to work together to provide the right environment for our PWBDs and our bleeding disorders community. We can only grow together through a close partnership with organizations like the WFH.

To read about the way the WFH and NMOs collaborate to make a difference in local bleeding disorders communities, please read “National member organizations: the heartbeat of the WFH” here.

To read more stories in this series, please click on one of the links below.

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