Editor’s note: This is the fifth post in our blog series Local Brilliance: Women leading global health innovation, featuring scientists and leaders who are saving lives and improving health for the people in their countries and communities.
When I was little, my mother—an organizer and single mom—included me in her work, taking me to democratic caucuses and advocacy meetings. It was important to her that I understood women could be powerful catalysts for change.
My mother affected me in profound ways. One: I saw that it was not only possible but essential to fight for positive change. Two: I saw that women could have an important voice in advocacy and organizing for that change.
When I wasn’t accompanying my mother, my grandmother cared for me. Another amazing force in my life, she had left Greece to travel to California to marry someone her parents had chosen. Her story, so different from my mother’s, showed me how the lack of autonomy over one’s own life can have a ripple effect causing years of struggle and suffering.
Personal loss and the rise of a new disease
While living with us, Grandma was diagnosed with bladder cancer and underwent several cycles of chemotherapy and radiation. To “remain whole,” she elected to keep her bladder even though removing it meant a better chance at survival. By the time she agreed to surgery, the cancer had metastasized.
I had been a child and a granddaughter, but now I was a caregiver. The experience deepened my understanding of caregiving, the role of families, and the complexity of individual decision-making related to chronic and progressive diseases.
Between health and politics
As a teenager, I was politically active, joining groups focused on health and gender rights. I was also a peer expert on HIV and safer sex. In college I campaigned for women’s reproductive health rights, participated in media events, protests, and supported pro-health care access, pro-choice, and LGBT-friendly candidates.
Public health work and direct political campaigning could deliver great impact, but I was torn over what to pursue. I took an internship in Cambodia at PACT organizing HIV prevention education and behavior change. The stigma accompanying HIV was similar to the United States, but in socially conservative Cambodia, people did not even have access to basic HIV care. There were also many barriers to family planning options for women and families who wanted to limit or space births.
Like mother like daughter, only thousands of miles in between
By now it was clear: I wanted to work in international health and development and live overseas where the work felt most meaningful to me.
Working on the Thai-Myanmar border, I saw communities impacted by war and poverty. These populations had extremely high maternal mortality rates, and malaria and malnutrition were endemic. It was here that I met Dr. Cynthia Muang of the Mae Tao Clinic. She showed me what was possible, even with almost nothing. She led by example, living very simply with her family and the growing number of volunteer doctors she trained or who came to work with her.
This experience led me back to Cambodia, then Vietnam in an Asia-Pacific regional position, to Ghana, and then back to Vietnam—all working in HIV, chronic disease management, health rights, and access.
Why empowerment, care, and communities matter
Today I draw on my experiences to lead chronic diseases prevention, treatment, and management.
In the Mekong, I direct a leading-edge HIV intervention, guide a community hypertension prevention and care project, and oversee a pediatric TB prevention and treatment initiative. For me, the most important elements of these efforts are the people and families affected by disease and the role of their communities. This means advocating for:
- A focus on personal autonomy, self-care, and quality of life: People are unique and complex, and their needs change over time. Chronic disease–care systems must be person-centered, emphasizing the client and their family, and focused on what matters to them. This includes reinforcing their ability to decide what is important to them at each stage of a disease. Self-care involves having the right information and tools to manage one’s own health. HIV self-testing and lay blood pressure measures are great examples of tools that people can use to assess and take control of their health.
- A continuum of care: Having a chronic disease means a lifelong relationship with the health care system. Most of the health care in lower- and middle-income countries addresses acute or episodic care. Reorganizing to accommodate care that ensures client follow-up, retention, and support is complicated but essential. This includes shifting care from a top-down approach to a team focus with the client, family, and community case managers.
- Expanded role of the community: Lay people have tremendous capacity and can offer high-quality and empathetic care. Through Healthy Markets, populations affected by HIV are trained and equipped to test their peers, and ensure they are enrolled in treatment if they are diagnosed. A similar approach is being piloted for hypertension where blood pressure measures and cardiovascular disease risk assessment are offered by community volunteers.
The management of chronic diseases is still evolving in lower- and middle-income countries as we get the approach right so it works for people in resource-constrained settings. Advancing this work hinges on innovation and trying new things!
I often think of my mother, my grandmother, and the mentors and colleagues who inspired me over the years. Now that I have my own children, I hope to instill in them the same drive and passion for meaningful change.
- Dr. Kim Green is the program director of the HIV/TB and Noncommunicable Diseases Program in the Mekong Regional Program at PATH.