The FH Foundation is pleased to report that the first-ever FH Advocacy Group in Iraq was launched on May 22, 2020. Ms. Fatima Lahmood, a strong FH warrior living with Familial Hypercholesterolemia (FH) and a pharmacy student, has taken on the leadership role as patient representative, working with Dr. Mutaz Alkhnifsawi, President of the Iraqi Lipid Clinic Network and others.
Ms. Lahmood first connected with the FH Foundation and others around the world through the FH Foundation’s online Discussion Group. Cat Davis Ahmed, VP of Policy and Outreach for the FH Foundation, introduced Ms. Lahmood and Dr. Mutaz, hoping he could help her get the care she needs for her FH. After Dr. Mutaz attended the FH Foundation Global Summit and participated in the Global Call to Action in 2018, he was inspired to take one of the key recommendations from the global coalition and establish a patient advocacy group in Iraq. The two connected in Iraq, and today Ms. Lahmood has joined the amazing efforts led by Dr. Mutaz in Iraq as the first Iraqi FH Advocacy Group Representative. She has a seat on the decision-making committee and participates in all meetings, including meetings with the Iraqi Ministry of Health. Ms. Lahmood will represent the needs of individuals and families in Iraq seeking the best care for FH.
"It's a great honor to fulfill this position. I hope I can help as many people as I can, like the FH Foundation helped me. I cannot be more grateful that I got to know about FH before it's too late. I'll make sure that I do the best I can do for other people in my country and in the region who need the same opportunity."
– Ms. Lahmood
First Iraqi FH Advocate Group Representative
Dr. Alkhnifsawi gathered a group of FH patients, including Ms. Lahmood, over a six month period to discuss experiences and challenges facing them, including the lack of access to drugs to treat FH, side effects, living with FH. He also explained the efforts of the Iraqi Lipid Clinic Network working with the Iraqi Ministry of Health. This was the first FH Community gathering in Iraq and the individuals who participated were happy for the opportunity to connect.
“It was not possible for patients in my country to play a role in decision making concerning a disease they suffer from. The decisions were exclusively made by physicians. After the second Global Call to Action meeting at the 2019 FH Global Summit and the development of the Global Call to Action recommendations, I started working actively to educate patients about how important their role is in decision making. I am so happy Ms. Lahmood accepted the request to be the first patient representative, establishing the first Iraqi FH Advocacy Group.”
– Dr. Mutaz Alkhnifsawi
EAS-FHSC National lead investigator, Imperial college (UK)
President of the Iraqi Lipid Clinics Network
Global Effort to Prioritize FH as a Public Health Concern
In 2018 the FH Foundation ignited the global FH community to update the 1998 World Health Organization report on familial hypercholesterolemia. Despite the prescient recommendations, the continued lack of awareness, low rate of diagnosis and under-treatment for this common, genetic condition was leaving generations of families at risk for devastating heart disease. The FH Foundation and the World Heart Federation partnered to convene the original authors, the international community of FH patients, FH advocacy organizations, FH medical and scientific experts, and public health experts to develop a new set of global policy recommendations with regard to FH that was published in JAMA Cardiology in January 2020.
"Establishing recommendations to improve the diagnosis and care of FH worldwide are important first steps to prioritize FH as a public health concern. However, taking action and implementing these recommendations at a local country level, such as what Dr Alkhnifsawi has done in Iraq, is what we hoped we could achieve with partners around the world. The FH Foundation congratulates the Iraqi Lipid Clinics Network and looks forward to the continued progress in Iraq and across the 40 countries who participated in these efforts to improve outcomes for families impacted by heart disease and FH."
– Katherine Wilemon
The FH Foundation, Founder and CEO