For patients living with Homozygous Familial Hypercholesterolaemia (HoFH) in Lebanon, access to life-saving treatment has been an ongoing challenge. Due to the country’s ongoing crises, LDL apheresis—the only available treatment for HoFH patients in Lebanon—was discontinued for a period, then resumed inconsistently. This uncertainty placed patients at high risk for premature cardiac events and severe complications.
On February 17, 2025, a pivotal meeting took place at the Presidential Office of Lebanon. Representing FH Lebanon, an informal patient support group, I, Chyrel Lichaa, FHEF HoFH Patient Ambassador, was joined by Rose Chahine and her son Marc Salloum, HoFH patient, as well as Saide Salloum, who tragically lost her son and our friend Wassim Nissi due to the lack of treatment.
Together, we met with the Advisor to the President of the Republic of Lebanon to advocate for consistent and sustainable access to LDL apheresis.
The Road to the Presidential Office
This meeting was not an isolated effort but the result of sustained advocacy. Leading up to it:
The Meeting: A 20-Minute Window to Make an Impact
Understanding the constraints of time in such high-level meetings, we planned the flow of our intervention, ensuring that each of the advocates (me, Rose, and Saide) had the chance to speak and share our personal experiences while backing them up with existing scientific evidence. For that, we liaised with FH Europe Foundation and Prof. Marianne Abi Fadel. Unsure of how the meeting might evolve (limited time, emotions, unexpected questions) we also prepared and printed support materials. Those included:
During the discussion, we addressed fundamental questions about HoFH—what it was, why treatment was essential, and how treatment frequency affected its efficacy. We also shared personal experiences, with both Marc and me providing firsthand insights into the challenges we face as people living with HoFH, alongside Saide and Wassim’s tragic story.
A Positive Response & Next Steps
Despite Lebanon’s complex and tense situation, we were met with a receptive response. The Advisor to the President assured us that our concerns would be escalated to the new Minister of Public Health and other key healthcare authorities. The commitment was clear: no patient should have to worry about where their next treatment is coming from.
As a next step, our case file will be formally discussed with the Ministry of Public Health, and a follow-up meeting will be scheduled in the coming weeks. This will provide an opportunity to delve deeper into actionable solutions for ensuring consistent treatment for all HoFH patients in Lebanon.
Hope for the Future
This meeting was a significant step in our fight for treatment access, but it is just the beginning. Advocacy requires persistence, and we remain committed to ensuring that HoFH patients in Lebanon receive the care they need and deserve.
We sincerely appreciate everyone who has supported this cause.
Our special thanks go to FH Europe Foundation for empowering us and providing essential documents and evidence to strengthen our case. We are also deeply grateful to Professor Marianne Abi Fadel, whose ongoing support, data, and direct involvement with the Ministry have been invaluable, and to Professor Samia Mora for her unwavering commitment, and to everyone who cosigned the high-level advocacy level letter: Magdalena Daccord, Prof. Dirk Blom, Prof. Khalid Al Rasadi, Prof. Børge Nordestgaard, Prof. Marianne Abi Fadel, Prof. Albert Wiegman, Prof. Samia Mora, Michelle Winokur, Maria Nassif.
And finally, to everyone who stood by us and contributed to this journey—your support is instrumental. We look forward to continuing this mission toward a future where no patient is left behind.