Suffering in silence: The deadly economic burden of NCDs

JUBA, South Sudan — Propping herself up against the dirty wall behind her bed, Monica Solomon slowly reaches for the small bottle of insulin.

“When I leave here, I don’t know what I’ll do,” said the 37-year-old.

Last month Solomon was forced to check into South Sudan’s Juba Teaching Hospital when her diabetes took a turn for the worse. Fatigued and rail thin, the mother of three had to beg for money on the street in order to pay for one bottle of medicine, which will only last her 45 days.

The hospital didn’t have any medication, nor any blood glucose tests; doctors say they’re treating patients in the dark.

“We’re doing things blindly — we can lose a person without blood tests because you don’t know if they’re getting better,” Richard Osera, a medical student at the hospital, told Devex.

Many patients who can’t afford to pay for medicine die in the hospital from diabetes, Osera said.

Standing in his small shop in the center of Juba, a pharmacist — who didn’t want to be named over fears for his safety — points to various brands of drugs and says most hospitals are “mismanaged,” and as a result, can’t afford to buy drugs, in turn leaving thousands of patients without access to medicines.

Noncommunicable diseases, including diabetes, cancer, cardiovascular and chronic respiratory diseases, account for 41 million deaths globally each year according to the World Health Organization. Developing countries such as South Sudan, with limited access to health care and scarce resources, are the hardest hit.

Not only has South Sudan’s five-year civil war displaced millions and plunged parts of the country into famine, it’s also had a crippling effect on an already fragile health care system.

Since the onset of the conflict in 2013, at least 20 percent of the country’s medical facilities have closed and only 400 out of 1,900 remain fully operational. Approximately 70 percent of South Sudan’s 12 million people lack access to adequate health care, according to the a report by Watchlist on Children and Armed Conflict, and those who do have access can become financially burdened by out of pocket expenses, driving many families into poverty.

When Solomon got sick she was forced to quit her job at the water company, leaving her children to fend for themselves. Her husband had died years earlier and while the children’s uncle offers minimal support, she said that it is inconsistent and not enough. In order to care for her siblings and support her mother in the hospital, the eldest daughter started selling tea on the side of the road after school.

Recognizing the impact of NCDs

Less than 2 percent of South Sudan’s budget is put towards health care as opposed to the allocated 7 percent, according to the ministry of health. The ministry said that in recent years, NCDs such as diabetes have been on the rise but will always take a backseat to infectious diseases such as malaria and cholera.

“People don’t fund NCDs because we are so overwhelmed by communicable ones,” said Pinyi Nyimol Mawien, director general for preventative health at the ministry.

Last year the government planned to create an urban working group focused on assessing the prevalence and impact of NCDs in the country — it’s currently unknown just how widespread they are — but due to a lack of funds, the group was never launched. As a result, South Sudan has no official numbers detailing the extent of NCDs.  

Mawien estimates that tens of thousands of South Sudanese living without access to medicine, early detection, and regular checkups, are dying from diseases that shouldn’t result in death.

Global health experts say that the only way to start combating the issue of NCDs is to start recognizing that it’s an issue.

“This is an increasing problem, which so far has an inadequate response to the current and likely future increase in the burden of disease caused by NCDs,” said Philippa Boulle, chair of the Médecins Sans Frontières working group on NCDs. In low- and middle-income countries there isn’t sufficient funding available because there are often competing priorities, said Boulle.

In one attempt to bring more feasible, inexpensive, and effective treatment to those in need, MSF adapted its models of care to different humanitarian settings.

In places where NCDs are prevalent — such as refugee camps in Kenya — the MSF aid group conducted an investigation into the stability of insulin to enable people who don't have refrigerators to take insulin at home. The study showed that insulin could be kept safely out of a fridge for a certain period of time.

In 2015 in South Sudan, the aid group launched the home insulin program in the town of Agok in Abyei. They trained patients and their caretakers to administer insulin so they didn’t have to come into the hospital each day for treatment, the group currently provides patients with free insulin and monthly checkups. A total of 33 people are currently enrolled in the program.

Combat NCDs by investing in training and resources

In addition to adaptive measures, health experts say that one of the keys to mitigating the effects of NCDs is investing in human resources.

“One of the things that can be done from a global perspective, would be to facilitate the training of persons as health care providers,” said Sir Trevor Hassell, president of the Healthy Caribbean Coalition.

In 2005, out of a potential workforce of 4,600 health care professionals, there were only eight midwives and zero doctors in South Sudan, according to the ministry of health.

“The rest had fled during the war looking for greener pastures,” said Alexander Dimiti, director general of reproductive health at the ministry of health, adding that long-term training of health care workers is crucial if the country’s going to have a chance at combating diseases.

Some training has already begun. Since 2012, the ministry of health has been working together with the United Nations Population Fund to train nurses, technicians, clinical officers, and physicians’ assistants, training over 600 midwives and 30 medical specialists.

In conjunction with increased human resources, the ministry says what it really needs is the right equipment and tools — and people who know how to operate them.

“We don’t need money, we need equipment,” said Mawien. “Give us an MRI machine and then train our employees how to use it.”

There isn’t a single MRI, CT scan machine or oncology ward in any public hospital in the entire country, which makes early detection for diseases like cancer and those at risk of stroke, challenging. He also suggested private companies could step in by sending consultants to develop policies and plans to combat NCDs.

Raise awareness, improve access to information

The other area, which health professionals agree could help in narrowing the knowledge gap with regards to NCDs, is through increased communication.

The ministry is engaging with external telecommunications companies to provide toll free numbers that people can call to get health information. It has also proposed creating daily radio programs about NCDs to further awareness in remote communities where people rarely see a doctor.

According to Mohga Kamal-Yanni, senior health and HIV policy adviser at Oxfam International, public health campaigns to raise people’s awareness about the prevention and treatment of NCDs would help mitigate the effects, especially in LMICs.

She called on WHO to play its part in ensuring “that countries and multilateral agencies integrate prevention, diagnosis, and treatment of NCDs in all national health strategies,” and urged pharmaceutical companies to consider lowering their prices to make medicines more affordable for those who need them most.

For example, in 2010, Novo Nordisk — a global health care company and the largest insulin provider in the world — implemented the Base of the Pyramid program in Kenya, aimed at increasing awareness of diabetes. Since its inception, it has established 46 diabetes support centers throughout the country and has increased the number of facilities stocked with insulin from 53 in 2012 to 184 by 2015. To date, approximately 6,000 people have improved access to affordable diabetes care on a monthly basis, and another 20,000 have been screened for diabetes.

As this year marks four decades since the Alma-Ata Declaration — which identified primary health care as the key to achieving health for all — Oxfam’s Kamal-Yanni said that there needs to be a stronger focus on primary health care. This should include enabling health staff at the primary level to diagnose early and to support patients with long-term treatment.

"[What’s needed now are] public health campaigns to raise people’s awareness about prevention and treatment of NCDs, and training an adequate number of health workers at various levels to diagnose and treat NCDs, including surgery and radiotherapy for cancer," he said.

Thousands of people living with NCDs, like Monica Solomon in Juba, will be counting on it.

For more coverage of NCDs, visit the Taking the Pulse series here.