Edna
- a 20-year PLHIV care story -
I am proud of myself, because I don't think about whether I am HIV positive now... I am free, I can do anything that I want to do, and I am seeing that I am somebody.
(Edna Moraa)
"PEPFAR gives hope"
PEPFAR Kenya gives hope through...
providing life-saving medicine and comprehensive care to people living with HIV
On May 27, 2003, the United States signed a law that created the President's Emergency Plan for AIDS Relief (PEPFAR). As PEPFAR celebrates 20 years in Kenya, we look back at the tremendous impact that the program has had in the lives of millions of Kenyans, as exemplified by Edna's story. Edna is just one of the more than 1.3 million Kenyans living with the daily support of ARVs – which means there are 1.3 million families, and countless communities throughout Kenya who have been impacted by this gift of life. Through two decades of partnership with the Government of Kenya and other partners, PEPFAR has changed the course of the HIV/AIDS pandemic in Kenya – we are now on the cusp of epidemic control.
But on May 27, 2003, Edna Moraa was waging a battle for her life…
Edna was married with 3 daughters by her early twenties. Her husband was unfaithful to her, and one day he suddenly died. Soon thereafter Edna became physically ill, and her brother took her to Kericho District Hospital because he suspected that her husband had died of AIDS. When she tested positive for HIV, Edna stayed in her home for a long time without talking to anybody. She recalls thinking, "I wished the earth could open up and swallow me."
One day in 2002, Edna was told that there was a group called ‘Live with Hope,’ and she went there and met three other people who were HIV positive. "That is the first time I heard that I'm not alone," Edna recalls, and she started learning about her status and what she could do. When Edna first started antiretrovirals (ARVs), "life was hard" because of the unbearable expense. The financial burden of paying for the ARVs was extreme twenty years ago – approximately 30,000 KSH / nearly $400 per month through private providers. For Edna, the burden was initially borne by her brother and then by “Live with Hope,” but this was not sustainable. Finally, in 2003, the cost of her medicines was covered by PEPFAR, when she became the second patient enrolled in PEPFAR's new ARV program at Kericho District Hospital. As Edna describes it: "From there, I have never defaulted. I'm on the first line of ARVs. I take them daily, and I'm comfortable with it."
Edna went on to become a community mobilizer with ‘Live with Hope.’ She goes out into the community to teach people about HIV/AIDS, encouraging them to get tested, and showing that you can live positively with HIV. "I went to neighborhoods, schools, churches, hospitals – everywhere. I was free talking to people. I didn't hide [my status]. I wanted to help people."
When people in Kisii heard that there was a lady who was HIV positive and willing to disclose her status publicly, they were amazed. Officials from Kisii county and neighboring counties started taking Edna all around to help encourage other people to get tested too. "I told them: 'There is hope. We are on [ARV] drugs, and we can make it.' That is how it started… we got some more clients... We started so many groups, going out, educating people." Edna has spent many years looking for children not taking antiretrovirals (ARVs) and urging their families to get them back on the treatment that saved her own life, and she has mentored many HIV positive children and their families to live healthy lives.
Besides being one of the first patients to receive ARVs through PEPFAR in Kenya, Edna was among the first HIV positive women in Kenya to give birth to an HIV-free child. Thanks to the Prevention-of-Mother-to-Child-Transmission (PMTCT) support she received through PEPFAR – in particular, thanks to the support of Sophie, a PEPFAR-trained community nutritionist and PMTCT counselor, who has walked alongside Edna for 20 years – Edna’s fourth daughter was born HIV negative. According to Dr. Isaac Tsikhutsu, one of the PEPFAR-trained doctors who has been treating Edna for two decades, this was revolutionary: "At that time, because the rates of mother-to-child-transmission were still so high, there was almost a silent rule, even among the doctors: 'If you are HIV positive, don't get pregnant, because your child may get infected.’
Edna's youngest daughter is now an HIV-negative, spunky, self-assured seventeen-year-old in her last year of secondary school – a level of education only two out of every five students in Kenya reach. And like Edna, Edna’s eldest daughters have delivered healthy, HIV-negative babies of their own.
Edna is also a pioneer participant in two ground-breaking clinical research studies of people living with HIV (PLHIV) in Kenya. These studies of people like Edna – living bravely, hopefully, positively, and healthily with AIDS – have already led to findings and best practices that have shaped how the medical community cares for PLHIV not just in Kenya, but around the world.
Edna’s life was saved once again when she was screened, diagnosed, and treated for cervical cancer through one of the PEPFAR-funded studies she volunteered for. As she says, “If it was not for them, I couldn’t know I had cervical cancer… they saved my life.”
These days, Edna is happily remarried, surrounded by her daughters and grandchildren. She continues to be supported by Sophie, the PEPFAR-trained community nutritionist and PMTCT counselor. Edna teaches tailoring skills to young people vulnerable to or affected by HIV, to empower them to provide a living for themselves and their dependents. She also regularly encourages HIV-positive pregnant women to seek PMTCT services and cervical cancer screenings, sharing her own life-giving experiences. Through Edna and Sophie’s support, Edna’s middle daughter, Lenah, has just given birth to an HIV free baby – Edna’s seventh beautiful grandchild.
Edna is living a vibrant life – more than 20 years after her diagnosis – thanks to life-saving antiretroviral drugs (ARVs) and the comprehensive package of care she has received through PEPFAR.
Over the last two decades, PEPFAR has invested in robust HIV service delivery, public health systems, workforce, laboratory, clinical, and community care platforms to tackle the unique issues confronting people living with HIV (PLHIV). As millions of PLHIV like Edna survive longer, the PEPFAR program continues to make strategic shifts in programming to address their major causes of morbidity and mortality, including TB, advanced HIV disease, non-communicable diseases (NCDs) such as hypertension and mental health, cervical cancer, and other comorbidities. We have also supported critical programs to tackle stigma, discrimination, and gender-based violence. More recently, we have expanded our investments in community-led monitoring to pinpoint key barriers to HIV service access and continuity at the facility level and to deploy innovative solutions to address these barriers, such as services provided closer to the community, and multi-month dispensing of antiretroviral drugs – all with communities in the lead. To support PLHIV in having a normal, healthy lifespan, clients who are healthy like Edna can now access services in a manner that facilitates long-term adherence, durable viral load suppression and ultimately high-quality life and productivity thanks to PEPFAR’s support for Differentiated Care Delivery Models for ART.
Edna Moraa – like millions more PLHIV in Kenya – is living with hope thanks to her incredible resilience and PEPFAR’s long-term, multi-layered support. In her own words: “I am proud of myself, because I don’t think about whether I am HIV positive now… We used to be stigmatized, but since starting ARVs, I am free. I can do anything that I want to do, and I am seeing that I am somebody.”