Ryan White would have turned 52 on December 6, 2023.
Thirty-three years after his death from AIDS, the Indiana teen who became known internationally in the 80s for the stigma he faced, is described by his mother as a kid who loved school and enjoyed learning about the world so much that he asked for a subscription to Time magazine when he was 9 years old. He had planned to attend Indiana University but died in the spring of his high school senior year.
More than 100 people from Kenya and across Indiana gathered at the Indiana Memorial Union in Bloomington on Ryan’s birthday to hear Jeanne White-Ginder’s reflections on the impact of her son’s life and to honor Joe and Sarah Ellen Mamlin as the recipients of the 2023 Ryan White Distinguished Leadership Award from the IU School of Public Health-Bloomington.
White-Ginder calls herself “just a mom” who, along with Ryan, was thrust into the spotlight after Ryan contracted HIV during treatment for his severe hemophilia. “Sometimes, because of the love of your children, you do a lot of things you never thought you would,” she said. She recalled the support she received from amfAR and Elton John and being invited by Senator Hatch and Senator Kennedy to Washington, DC, shortly after Ryan’s death in 1990 to speak to senators about the importance of passing the Ryan White CARE Act to provide funds to care for low-income and uninsured people living with HIV.
“Senator Hatch said, “We are going to approach it as a mom, because everybody has a mom,” White-Ginder recalled. “We took the misinformation, fear and panic out of it and we made this disease real to so many people.”
She continues to speak about Ryan’s courage in the face of his disease and annually attends the IU event to honor others who continue the work of caring for people living with HIV.
Established in 2009 by the school’s Rural Center for AIDS/STD Prevention (RCAP), the Ryan White Distinguished Leadership Award recognizes individuals who are "exemplary bearers of the standard of excellence and commitment needed to combat HIV/AIDS." In addition to White-Ginder, previous recipients include AIDS Quilt visionary Cleve Jones, Dr. Anthony Fauci, Greg Louganis, Dr. Joycelyn Elders and Dr. C. Everett Koop. Established in 1994, RCAP promotes prevention of HIV and other sexually transmitted diseases in rural America. It has been largely supported through a partnership with the CDC.
The Mamlins have been leaders in the AMPATH Kenya partnership through the IU School of Medicine for more than three decades.
"Dr. Joe and Sarah Ellen Mamlin are shining beacons of the state of Indiana and Indiana University," says Provost Professor William L. Yarber, senior director of RCAP. "What they did in partnership with Moi University is a miraculous transformation of healthcare in Kenya. Their determination and work with their Kenyan colleagues have led to one of the most comprehensive, successful, and touted health care programs in the world—a program that saved countless lives and empowered the ill and impoverished.”
During a fireside chat style interview with Dr. Yarber, Dr. Mamlin explained that the partnership between Indiana University, Moi University and Moi Teaching and Referral Hospital (MTRH) began when four IU School of Faculty members who each had international medical experience were discussing how they might create that type of experience for IU School of Medicine learners. A donation from a friend “allowed the four of us to travel in 1988 to see if we could find a spot where we could do mischief,” mused Dr. Mamlin. “We traveled to Ghana, Nepal and Kenya, and chose Kenya.”
For a decade, the partnership proceeded with one IU School of Medicine faculty member spending a year each in Kenya to establish a medical student exchange and assist with the fledgling Moi University medical school.
When Dr. Mamlin retired from Indiana University School of Medicine in 2000, he and Sarah Ellen Mamlin made a one-year commitment to return to Kenya and found a hospital and country at the epicenter of the HIV epidemic. “It seemed like all the young people in Kenya were dying right in front of me,” recalled Dr. Mamlin. “It was heartbreaking.”
Dr. Mamlin is widely known for his early advocacy for antiretroviral medications to treat people living with HIV in Kenya. Daniel Ochieng, AMPATH patient #1, was a Moi University medical student who was dying of HIV in 2000. With antiretroviral (ARV) medication personally donated by another IU faculty member, Dr. Mamlin began to treat Daniel and he began to return to health in 3-4 weeks.
Dr. Mamlin recalled that when Daniel was released from the hospital they set him up in a small hotel next to the student dormitory. “And they threw him out. They were afraid of him. They pushed him out of the building. They called me at the IU compound to say that all the residents of the hotel wanted him out. And so Sarah Ellen and I brought him to the IU compound to live with us for some months until he had fully got his strength back. I thought of Ryan at that time because of what I’d experienced here in Indiana, remembering what Ryan had gone through,” continued Dr. Mamlin.
The faculty member who had donated the money for Daniel’s treatment, Dr. Joe Wheat, then donated enough ARVs to treat 40 people. As they returned to health, the AMPATH HIV care program was born. “We thought the world’s going to respond somehow,” recalled Dr. Mamlin. “We didn’t know how. We just needed to stay alive as a little team until that day came.” A grant from a small family foundation in Canada provided a bridge until The President’s Emergency Plan for AIDS Relief (PEPFAR) was launched in 2003.
Two clinics became hundreds of clinics. Forty patients became tens of thousands of patients. One room to treat patients at Moi Teaching and Referral Hospital became the AMPATH Centre, the single largest HIV clinic in the world. The IU-Kenya partnership became the Academic Model Providing Access to Healthcare (AMPATH) with more than a dozen other leading universities around the world involved in the partnership. And one year in Kenya turned into 20 years for the Mamlins.
Joe and Sarah Ellen returned to Indiana in 2019, but they continue to be deeply involved in AMPATH’s mission and plan to travel to Kenya again in January 2024.
“When Joe Mamlin and his IU School of Medicine colleagues formed a partnership with Moi University School of Medicine in Kenya in 1989, they changed the trajectory of both institutions for the better,” said Dean Jay L. Hess, Indiana University School of Medicine. “The AMPATH partnership has provided care for more than 200,000 people living with HIV and has hosted thousands of trainees and conducted research that has changed lives, not just in Kenya and Indiana, but around the world.”
“Joe and Sarah Ellen came to Kenya at the height of the HIV crisis and committed themselves to improving the lives of Kenyans living with HIV, their families, their children and their communities,” said Professor Sylvester Kimaiyo, Chief of Party, USAID AMPATH Uzima. “Over more than two decades they never wavered in that commitment and working with their Kenyan friends and colleagues they saved and changed countless lives for the better. He brought up and mentored me and many others. He is our father.”
Dr. Mamlin’s recognition that food scarcity and a lack of economic resources were essential contributing factors to the HIV epidemic led to a partnership with the World Food Programme and the development of community Group Integrated Saving and Health Empowerment (GISHE) groups. These groups provide economic education and opportunity to their members through savings and lending programs as well as entrepreneurial and agricultural initiatives. More than 2,600 of these groups now exist with an average of 20 members each.
“Joe and Sarah Ellen Mamlin have done as much as any person anywhere to address the HIV pandemic in Africa,” said James T. Morris, vice-chairman Pacers Sports & Entertainment and former executive director of the United Nations World Food Programme. “The have made life better for hundreds of thousands of people and have done it with such passion, care, and love. The way they have reflected the goodness of Indiana University and the State of Indiana in their dedication is extraordinary. Their work is worthy of Nobel Prize consideration. Don’t know two finer people or two folks with better humanitarian hearts.”
Dr. Mamlin also became a leading visionary in AMPATH’s Population Health strategy that involves the development of a comprehensive care system, expanded enrollment in the national health insurance plan and growth of economic empowerment opportunities. He continues to work with his Kenyan colleagues on this initiative.
Mrs. Mamlin’s contributions to the Sally Test Child Life Center and broader child life program in Kenya are similarly innovative and impactful. Mrs. Mamlin is the founder of the center that provides children and their families with opportunities for play, distraction, medical preparation and procedural support during hospital stays. Mrs. Mamlin’s tireless mentorship and leadership are responsible for the growth and success of the child life program.
In honoring Mrs. Mamlin, the staff said, “We thank Sarah Ellen Mamlin for the hard work and sacrifice she gave in the development of the only child life program in Kenya and probably Africa. Her contribution is irreplaceable. Thank you for mentoring and creating a strong Kenyan child life team that will bring change in lives of Kenyan children and their caregivers during hospitalization."
Illness prevented Mrs. Mamlin from attending the awards celebration, but Dr. Mamlin credited her for their success in Kenya. “We met in college and she took on the task of growing me up. Everything good that’s happened in my life, I owe to Sarah Ellen.” The Mamlins recently celebrated their 65th wedding anniversary and Dr. Mamlin said the key to that is to learn to shut your mouth. “But she quickly points out that that has never been the case,” he quipped.
A recent discovery of love letters that Joe sent Sarah Ellen in 1955 and 1956 when he spent the summers as a lumberjack on the west coast brought a revelation to Dr. Mamlin. “As I sat and started reading those, I began to realize that the truth is this was deep in the fabric of what our life together was becoming. It’s not the details, you don't know the details, but we knew that we wanted medicine as a part of our life and with that to engage places where people were being left out, where equity was not there.”
When students ask Dr. Mamlin how to follow in his footsteps, his advice is “Spend about 10 percent of your time becoming the best doctor you can be and 90 percent of the time figuring out who you are and what you really care about. Believe me, when your skills and your values are in harmony, it’s a lot of fun and a lot of peace.”
Dr. Mamlin emphasized that everything that has happened in Kenya was done by Kenyans with Kenyan leadership. Most of the deans of the med school and leaders of the hospital have been graduates of the Moi University School of Medicine.
“The Mamlins have been mentors and role models for me and hundreds of other trainees from Kenya and Indiana,” said Dean Julia Songok, Moi University School of Medicine, who travelled to IU as a medical student and resident. They are humanitarians whose legacy of training, patient care and community service in Kenya will continue to impact the future through the generation of leaders that they have nurtured and inspired in the last 3 decades.”
Dr. Mamlin praised Indiana University for setting an AMPATH-like example when they reached out decades ago to Marion County Health and Hospital Corporation to help Marion County General Hospital respond to those left out. “That is the experience of AMPATH--unleashing the power of an academic medical center to reach out and care for people that are left out,” he said. “Indiana University has stayed with us every step of the way.”
Jerono Rotich, PhD, a native of Eldoret, Kenya, where the AMPATH partnership is based, is a professor in the School of Public Health-Bloomington, and associate dean for organizational climate, inclusion and belonging. “I’ve lost many family members and I’ve also had many family members who’ve been saved by the interventions of Dr. Mamlin and the AMPATH community. I’m thankful and thank God for the interventions by AMPATH.” In addition to welcoming the assembled guests, Dr. Rotich brought greetings from the Kenyan community and presented the Mamlin family with traditional Kenyan shukas in appreciation.
World-renowned vocalist Sylvia McNair honored the Mamlins by performing “Daima” a patriotic Kenyan song written by Eric Wainaina at the awards dinner. She prefaced her song by saying, “Once you’ve had your mind and your heart broken open by AMPATH, there is really no turning back. I stood in awe of Joe and Sarah Ellen watching them work 18-hour days. The term ‘working tirelessly’ gets thrown around a lot, but for Joe and Sarah Ellen, it really is true. AMPATH is the greatest thing Indiana University does.”
Dr. Yarber asked Dr. Mamlin what he and Mrs. Mamlin would like to be remembered for and what receiving the Ryan White Award means to them. “I think to be remembered as people who cared. That’s enough. I think it’s important for everyone to get involved in something that's a little bit bigger than you are and something that you can't really do during your lifetime. The story of Ryan White is a story of how one person can be such a force for change in our society. He had an enormous impact on my life personally, in my generation. I can only pray that the journey that Sarah Ellen and I had in some small way is worthy to be a part of the journey that he initiated,” concluded Dr. Mamlin.
Watch the 2023 full Ryan White Award Ceremony.
