Meet Regina Kamoga - World Patients Alliance

This section features Questions and Answers with Regina Kamoga, Founding Director WPA

Patients’ Voice is WPA’s quarterly Newsletter opening windows to news, activities, interactions and events organized by WPA, its member organizations around the globe and the international stakeholders working for patient safety and quality healthcare. Patients’ Voice features an interview with each Board Director in its quarterly issues and in February 2024 this is the time to meet Regina Kamoga. Patients’ Voice thanks Regina for sharing her story.

Patients’ Voice: When did you first get involved in the nonprofit world/community?

RK: It was in 2003 when I was approached by William Babumba, a Founding Director of the Community Health and Information Network (CHAIN) based in the United Kingdom, to help start up CHAIN in Uganda; an organisation that primarily focused on ensuring access to quality and safe medicines for people living with HIV/Aids and empowerment through treatment literacy at the time. I could not resist this opportunity to volunteer, despite the fact that I did not know much about the NGO world and had very limited knowledge about HIV/Aids which was ravaging the world especially Africa and Uganda in particular.

Patients’ Voice: What led you to get involved?

RK: I lost my younger sister to Aids in 2002, an incident that left the family devastated. We experienced several challenges seeking the right treatment, hampered by issues including stigma and discrimination, low health literacy on HIV/Aids, adherence to treatment, inadequate knowledge and skills to treat and take care for HIV patients as well as being taken advantage of by healthcare professionals who gained from the disease. I vividly remember, in a desperate bid to have our sister get treatment we took her to a medical center where she was given TB drugs and we were told they were Antiretrovirals (ARVs), drugs for HIV. We were asked to pay $400 per month for her treatment! It was a struggle to raise this money, but we had no option. Until one day a friend of mine who had also lost a sister visited her. I told her how   it was tough to keep her on treatment. I showed her the drugs and she was shocked, she told me they were TB drugs not ARVs!  She advised us to take her to a big hospital where the same drugs cost about $1 for a month’s dose!  A lot happened during this journey which greatly impacted my sister’s quality of life and positive outcomes.  So, getting involved with CHAIN was timely as it provided me with an opportunity to gain knowledge on HIV/Aids to better support the patients. Up to this day, I reflect and wish I knew what I know today!

Patients’ Voice: Is your background in nonprofit management or were you involved in a career when you began your work?

RK: Not at all. At the time I was involved in consultancy work and was also a part-time lecturer at Makerere University, Faculty of Forestry and Nature Conservation, Department of Community Forestry.

Patients’ Voice: What would you say is the most rewarding part of working with a nonprofit?

RK:  Giving help to the helpless and giving hope to the hopeless has been the most rewarding! Putting a smile on a vulnerable person’s face gives me abysmal pleasure. It makes my Day!

Patients’ Voice: What is the most challenging part of working with a nonprofit?

RK: Raising funds for the organization. When the going gets tough you have to dig into your pocket, raise money   from friends and family which can make you unpopular sometimes! The high expectations of the community do not make it any easier. Its quite tough balancing between managing expectations and building mutual relationships.

Patients’ Voice: What would you tell someone who was thinking about working or being involved with a nonprofit health organization?

RK:  First of all, one must be prepared to interface with the practical realities on the ground. Be ready to learn and work with community owned resources including the community health workers, Religious, cultural and political leaders; engage patients, family and carers to fully understand their needs and perspectives to ensure that interventions meet these needs.  It also requires true commitment, passion, patience and resilience. Like anything else they are hills and valleys, the ability to navigate and stay afloat is crucial. They are also very many opportunities for professional development, national, global recognition and strategic partnerships, but most of all how do you use those opportunities to make a difference in the lives of the people you serve. It’s more of giving than receiving!

Patients’ Voice: What are you most proud of because of your work in the nonprofit world?

RK: I am proud of my contribution to improving the quality of life and positive health outcome for patients, family and community at large. This has been through the various initiatives that I have spear headed and been part of which have included among others ; mobilizing and  empowering  community to demand for quality care and make informed decisions about their health through health literacy and patient safety interventions; advocating for patient , family and community engagement and empowerment in patient safety ; supporting  and mentoring patient safety advocates to promote patient safety; working with Virginia Ladd, founding Director Global Orphans Assistance Fund(GOAF) from Michigan ,US to start up  the Orphans and Vulnerable Children (OVC) programme at CHAIN which has supported over 20,000 children since 2006.

Patients’ Voice: If you want, you can share a little bit about you.  The number of kids, pets, and anything things else that would put a more personal spin on the article.

RK: I am married to a very loving husband and we have four beautiful girls. I am a lover of art and nature and love to be in a calm and quite, green environment listening to the sounds of birds!