May 9th, 2019
Thank you for rating the article
Rate this article:
Take a look to learn more about one of HemLEAD’s alumnus, Carlos Melgarejo. A SURO and AFFIRM graduate, Carlos continues to promote hemophilia advocacy – both in his home country of Guatemala and around the world. Read on to learn more about Carlos and his HemLEAD experience!
Tell us about yourself
I’m 28 years old, originally from Guatemala and have severe hemophilia A. I have a degree in business management from the Rafael Landivar University of Guatemala. Aside from my regular job at a real estate development company, I work with a hemophilia foundation based in Guatemala called “Fundacion Metamorfosis,” which strives to achieve a normal quality of life for every Guatemalan patient with a bleeding disorder by providing access to dignified care.
What inspired you to get involved with HemLEAD?
I first joined HemLEAD as a member of the Step Up Reach Out Latin-American (SURO LATAM) program. I was a part of the first generation of SURO LATAM, and I wasn’t quite sure about what I could expect out of the program. That said, I was motivated to participate because I wanted to expand my network and meet people with hemophilia from other parts of Latin-America. I was also interested in the opportunity to travel and experience different cultures. After SURO, I applied to AFFIRM; here, I was interested in learning more about the tools that would allow me to become a better advocate and leader for my hemophilia community.
What was being a participant like?
The HemLead programs really changed my life; before enrolling, I didn’t care too much about my hemophilia community, because I thought that I wasn’t going to be able to make a difference. However, participating in these programs changed my mindset. I met a lot of amazing people around the world – who were just like me – that were working toward positive change in their hemophilia communities. This, in addition to the amazing knowledge that I gained in both SURO and AFFIRM, helped convince me that change and progress in my country is possible, and I could play a part in making it happen.
What was one of your favorite memories as a HemLEAD participant?
I have many great memories. Once, a few AFFIRM participants and I got stuck at a venue in Scotland for more than 2 hours because we couldn’t find a taxi anywhere! That said, we had a great time hanging out and getting to know each other better!
What are you doing as a HemLEAD alumnus?
Right now, I’m working to raise awareness about hemophilia in my country and identify new hemophilia patients. I’m also working on an economics study assessing people on prophylaxis, how much the state loses when patients don’t have adequate coverage and how much can be gained if this changes. My colleagues and I hope that these results could become an effective advocacy tool.
What does being a hemophilia advocate mean to you?
Being a hemophilia advocate means that you should represent your needs as a patient and as a part of the greater community. You represent these needs with key decision-makers in your society that can help fulfill them by working together to a common purpose. You also need to understand your community, as well as the larger political context.
What advice would you give to current or prospective HemLEAD participants?
Learn as much as you can. HemLEAD recruits amazing teachers with great experience in leadership and advocacy; learn from them and from your classmates. Ask a lot of questions – remember that there aren't stupid questions – and think about how you can apply what you learned to your respective country. Additionally, don’t be afraid to share information about yourself, your struggles and the work that you do for your community; there are a lot of things that you can teach to program participants.
Is there any other information you’d like to share?
I’d love to share a project that my foundation and I developed as part of the AFFIRM program. It helped us identify more than 25 new hemophilia patients in my country, who are now being treated. Throughout the process, I received valuable advice from the AFFIRM faculty team, which made the project as successful as it was!