Her life, she thought, was over. Ravaged by cancer that left her immobile because of swollen legs, Falisi Kichimani endured all she could. Then she started getting weak—the entire body ached and she had constant diarrhoea.
With months, she did not just watch her legs continue to swell. Her limbs too began to wither into twigs.
As she grew too weak to gather firewood for her family, she made her way to a rural Health Clinic in Mozambique—that was where she was married. And she was diagnosed with HIV.
Alone and troubled in a distant land, and convinced that her situation was irredeemable; Kichimani left her husband and three children.
She arrived last year in March at her mother’s impoverished home at Mitumbira Village, T/A Chikumbu, Mulanje, to die in peace.
But as she was waiting to die alone in that grass-thatched, one-bedroomed house without a window, her mother started taking her to Mulanje Mission Hospital to test her CD4 so that she qualifies for treatment. It is a five-kilometre journey.
“Travelling has not been easy. With her swollen legs and frail body, we could always hire a bicycle taxi. But we did not always have money for a bicycle taxi,” says Falisi’s mother, Janet.
As a result, she could not maintain her dosage of medication.
Then the unexpected happened sometime in December last year. While on the journey to the hospital, they passed through a house of Elizabeth Kawinga.
Kawinga is a home-based care (HBC) provider trained by the Coalition of Women Living with HIV and Aids (Cowla).
Riding on a bicycle, Kawinga coordinates a support group in her village, and, with support from Cowla, she does not just distribute lifesaving Aids drugs to ill and bedridden patients such as Kichimani in her impoverished village.
“Just like the 11 others in my area, I visit her three times per week. I provide them with ARV’s, Panado, Bactrim and other medication which are purchased by Cowla in consultation with the hospital officials.
“Apart from that, I help them with household chores: Sweeping, collecting firewood and sometimes, cooking. I do this to create a friendly environment to them, to make them feel loved. I know that these people feel abandoned and discriminated,” says Kawinga.
Kichimani said, bedridden and dying, she could hardly swallow water by the time she got her first dose of anti-HIV medicine in December last year.
But when sitting outside her house two weeks ago, one could hardly tell she had ever been bedridden and dying. People living with HIV from the surrounding hills had packed at her house for an afternoon meeting, and their spirits and voices were high.
As they stomped and clapped and sang about hope and survival, Kichimani thumbed through her treatment diary to show how faithfully she had taken the medicine and how much it had done for her.
“I feel strong,” she said while preparing nsima for her visitors, eyes beaming. “I can fetch water, cook and wash clothes. I can even harvest maize in the field! I would like to find a job.”
And she adds: “Before HBC providers found me, I was lonely and afraid. It was only my mother who knew about my health status fearing I would be discriminated against. I can now talk about the problems I am facing with my new friends and we give each other support and encouragement.”
Kichimani’s story reveals the painful world which people living with the virus live, and how it is worsened or alleviated through absence or presence of HBC.
In 2011, a study by Malawi Network for People Living with HIV/Aids (Manet+) revealed that stigma—both internal and external—is still a deeper problem facing people living with the virus in the country.
“There is still a strong fear of acceptance for those diagnosed with the virus. Their lack of acceptance generates internal discrimination—which is the worst form of stigma. Such people tend to shun lifesaving drugs, as a result, they die early leaving behind a number of responsibilities,” says Safari Mbewe, executive director of Manet+.
It is against such findings that the National Aids Commission (NAC) is spearheading HBC as a critical factor in the general framework of HIV and Aids fight in Malawi.
According to the 2005 Malawi Community Home-based Care Policy and Guidelines, HBC is the care provided to chronically or terminally ill patients such as those with HIV and Aids, tuberculosis and cancer; clients affected by the illness of their relatives and friends; vulnerable and at risk groups in their homes supported by family and community members using available resources and support from the formal health worker.
In Malawi, formal community and home-based care services for HIV and Aids patients were initiated through NAC in 2001.
Due to the growing number of patients, communities were mobilised to provide care to the sick in their homes through volunteers. Since then, the number of institutions providing CHBC services has increased.
However, despite their proven effectiveness as evidenced in the story of Kichimani, Grace Njikho, Cowla coordinator for Mulanje, argues that the challenge being faced is that most people living with the virus continue to live in hiding.
“It becomes difficult for HBC providers to identify them and give them the necessary care. But with increased awareness and civic education, we can reduce situations where those with the virus should be living a terrible life and dying helplessly,” she adds.
And that was how Kichimani was saved from dying too early.