Monrovia, Liberia — Like too many people across Liberia Fatu Washington spent much of her youth "living with rejection from friends and neighbors", as she put it, in her home village of 'Joseph Town' in Bomi County.
The cause of her rejection started as a small lump. But it soon grew to a huge growth that distorted her face causing an eye to bulge. The pain was terrible.
It took ten years and many tests until 2021 when a nose and ear specialist at JFK Medical Center told her she had Fibrodysplasia Ossificans. Fibrodysplasia Ossificans is an extremely rare disease that impacts one in one million people. Diagnosis requires a microscope and trained Doctor who knows that to look for.
"I have not seeing Fibrodysplasia Ossificans in Liberia. she was the only person I have seen so far," said Doctor Tabeh Freeman in an interview.
Like many Liberian families facing serious illness Washington's had spent all the money they had trying to get help for their daughter. And like many before them they turned to social media in desperation. Fatu's eventual diagnosis from Dr. Freeman came as the result of a "Good Samaritan" who was willing to help.
While Liberia's healthcare system continues to struggle to provide even basic care for the population many people suffering serious illness are left at the mercy of a handful of relatively wealthy Liberians willing to find the money to help them. Benita Urey, daughter of businessman and politician Benoni Urey, is one of them.
"My number one occupation is being a humanitarian," said Benita Urey, CEO Healing Liberia Foundation. She founded it in 2021 to respond to the medical needs of critically ill Liberians who are unable to pay medical bills and associated costs.
"I believe the youth is the future of Liberia so if I can impact the life of a youth, if I help a dying young person, they will grow up to know that, 'I was helped when I was dying, let me extend this same helping hand to somebody else,"' Urey said in an interview at her home in Monrovia. "A sick person becomes a huge burden to their family."
Urey said she secured her first grant from the Ellen Johnson Sirleaf Presidential Center for $US30,000 in 2022. She has also added her own money. She said the funds have helped poor people across the country fighting illnesses like cancer, heart failure and Hepatitis B.
When Fatu Washington posted on social media she had almost given up hope of living a normal life.
"By the Grace of God, Benita Urey came across my photos on Facebook and she asked me to come to town for more tests," Washington said. At JFK hospital a doctor from Cameroon confirmed he would treat her.
"Fatu stayed at my house for one month that is how we became close and I learned a lot about her and her family," Urey said. "I have no reason for doing this. Her tumor is taken out completely, that is my job."
Fatu is not cured but things have improved a lot.
"So these patients is a concern for them, when you remove it, you have to do what we called reconstruction surgery," said Dr. Freeman. "Just like someone who had a leg, you amputate the leg you, have to give them false leg. So for the face, it is the same thing. You fix prosthesis for them, so at least the other side of the face that is normal, the other one should look the same."
Fatu is hopeful of returning to the life she once dreamed of. "I am in Monrovia for another test I am hoping and praying for life to turn around for a better one," Fatu said. "I want to continue my education. I want to become a doctor. When I see my friends in school it can't really pain my heart."
Victor Quaye is a cancer patient who was helped by Urey. He said he woke up one morning in 2020 with unusual pain in his eyes. It was finally diagnosed as cancer. Liberia had limited ability to treat it. After more than a year of suffering Urey funded his travel to Ghana.
"It has been a miracle for me because, at first I doubted that I could even gets the money to go JFK least to talk to about Ghana," he said. A few months after his return the cancer returned and Urey sent Quaye back for a second surgery. For now they are hoping he will not relapse.
Experts agree that while "good samaritians" like Urey are playing a crucial role they are not an answer to Liberia's massive health crisis. Liberia's healthcare system is failing on almost every measure. There are 924 doctors currently serving the population of 5.2 million. The doctor to patient ratio in Liberia is 1:5,000 - a number which is far below WHO recommendation of 1 doctor to 1,000 patients considered the minimum for adequate healthcare. The 2014 Ebola crisis - where 4,800 people including healthcare workers died - and the 2020 Covid 19 pandemic, have dealt heavy blows to the system.
The costs are felt most heavily by the poor many of whom are expected to pay cash before consultation, hospital admission, and treatment. According to World Bank data more than half of Liberians live in poverty. Nearly 2 in every 5 live in extreme poverty meaning they live on less than $US2.15 a day. The poor have no means to pay for basic treatment, let alone serious illnesses like cancer.
The health sector has an allocation of about $US75 million representing 9.7 per cent of the government budget. That means the government spends just $US14 a year on healthcare for each Liberian. Compare that with the United States which spends $US11,000 or the United Kingdom which spends $US4300.
But even the funds that do make the sector are not being spent efficiently. Corruption is a large factor. Hospital staff and government officials are caught stealing funds or equipment meant for patients. The lack of specialized doctors, remuneration and good working environment are said to be impeding patient care.
"The first thing is, the person is not happy but they have to serve but in serving again, the working condition is also the problem," said Deemi Dezarus, the Secretary General of National Health Workers Union of Liberia. Dezarus referred to the 2001 Abuja Accord where heads of African Union states committed to spend 15% of the annual budgets on the health sector.
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Dezarus wants more details on where health spending goes. "Today, we hear some nice stories how our national budget has gone up beyond $US700 million but in practice, how much have you allocated for health and those who are technicians in the field? You must give us the specificity of what you want us to spend the money on."
Other experts point to Rwanda and its successful health insurance scheme. Citizens pay for health insurance coverage according to their income in a system that spreads the burden of health care across the population. The poorest pay nothing for health care.
"Nobody should die because they have a medical condition or somebody become broke because they spend all their resources on a medical condition," said Dr. Emmanuel Ekyinabah, former President of the Liberia Medical Dental Council. "A nationalized 'health insurance' can take care of emergency and common conditions."
For now people like Fatu and Victor are the lucky ones to have got the attention of someone like Urey. Many more Liberians are not so lucky.
This story was a collaboration with New Narratives as part of the Investigating Liberia project. Funding was provided by the Swedish Embassy in Liberia. The funder had no say in the story's content.
Varney Dukuly With New Narratives
