Growing up in a small town in India, my childhood memories are haunted by my dad’s struggle with diabetes. After a myriad of complications that ranged from diabetic retinopathy to end-stage renal disease, he died after a failed kidney transplant surgery. He was in his early 50s, and I was barely out of high school. If that was not devastating enough, it took years for my family to recover from the catastrophic health expenses. Today, as I try to prevent my prediabetes from progressing to diabetes, I worry about facing the same demons that took my dad.
I’m not the only one. As the world’s attention stays riveted on the coronavirus pandemic, millions of people with non-communicable diseases (NCDs) are struggling to get the care they need and deserve.
A WHO survey of 155 countries conducted in May 2020 showed that more than half (53%) of the countries surveyed have partially or completely disrupted services for hypertension treatment; 49% for treatment for diabetes and diabetes-related complications; 42% for cancer treatment, and 31% for cardiovascular emergencies.
In India, for example, data show that outpatient visits for acute heart disease and cancer fell by half during the lock-down.
A more recent survey of 130 countries, conducted from June to August, showed that the pandemic has disrupted or halted critical mental health services in 93% of countries worldwide while the demand for mental health is increasing.
As Bente Mikkelsen, Director of the Department of Noncommunicable Diseases at WHO stated, “Not only are people with NCDs more vulnerable to becoming seriously ill with the virus, but many are unable to access the treatment they need to manage their illnesses.”
Widespread disruption of NCD care
Before the pandemic, NCDs were already the biggest cause of deaths worldwide. NCDs kill 41 million people each year, equivalent to 71% of all deaths globally. Each year, 15 million people die from an NCD between the ages of 30 and 69 years; more than 85% of these premature deaths occur in low- and middle-income countries (LMICs).
Catherine Kyobutungi, a NCD researcher and Director at the African Population and Health Research Center is worried about “a tsunami of NCDs” in future. “For several months, people with diagnosed NCDs were sheltering at home since they were high risk. This meant going for some months without treatment and a higher risk for developing complications in the near future,” she said. She is also worried about delayed diagnosis of NCDs such as cancer. “In Africa, approximately 60-70% of cancers are diagnosed at stage 3 or later. I shudder to think what that percentage is going to be in the next few years,” she added.
Viswanathan Mohan, a diabetologist at the Madras Diabetes Research Foundation India has been studying the bidirectional relationship between Covid-19 and diabetes. “The fear of contracting Covid-19 kept many people with diabetes from visiting diabetes centers even when there was a dire need for hospitalization. For example, patients with foot infection avoided visiting the hospital until it was too late. Covid-19 also affected the treatment of patients who needed regular dialysis, cancer chemotherapy and many other such instances of delay in treatment,” he said.
“In South Africa we were concerned about how Covid-19 will affect people with HIV and TB given our very high prevalence of these communicable diseases. As it turns out, more people with obesity, diabetes and hypertension were affected and died,” said Yogan Pillay, country director of CHAI in South Africa.
Ophira Ginsburg, a global oncology expert at NYU, shared her concerns about disruptions of cancer care. “We have grave concerns first and foremost for patients who have been unable to access needed surgery, chemotherapy, and radiotherapy, a problem being reported in multiple countries. In addition, not only does cancer and it’s treatments potentially raise the risk of Covid-19 related morbidity and mortality, Also concerning is the potential for increased risk of late stage cancer for those who missed their screenings,” she added.
Soumitra Pathare, a psychiatrist in India and Director of Centre for Mental Health Law and Policy, is worried about psychiatry wards and staff being diverted to Covid-19 care. “Psychiatric wards in municipal hospitals were converted into isolation ward for Covid-19 patients, thus reducing the availability of acute psychiatry beds,” he said. “There are a lot of anecdotal reports of relapse of stable patients with chronic mental illness, due to reduced access to mental health services,” he added.
“The economic impact of the pandemic on communities and patients has added to the financial challenges associated with procuring and refilling medications, thus adversely affecting medication adherence,” said Jemima Kamano and Rajesh Vedanthan, physicians involved in the AMPATH PIC4C project in western Kenya.
Impact on children with NCDs
“When NCD care for children was challenging before Covid-19, the pandemic has made the situation for many children in LMIC and their families so much more difficult, if not impossible in some places,” said Julia von Oettingen, a pediatric endocrinologist at the Montreal Children’s Hospital, and co-lead of the Global NCD program at McGill University.
She illustrated this with the example of type 1 diabetes. “Children with this condition need to inject themselves with insulin every day to survive and need to monitor their blood sugars multiple times a day. They need check-ups every 1-3 months, and sometimes more frequently. If they get sick, they may need specialized care and advice. Lockdowns and travel restrictions, fear of contracting Covid-19, and increased financial strain on families have exacerbated the disease burden by rendering access to insulin and diabetes supplies (often picked up at local clinics far away from their homes) and their health care providers (often pulled away to serve in Covid-19-related health care) even more difficult than it already is at baseline,” she said.
High cost of medicines & disrupted supply chains
High cost of medicines such as insulin was a well-recognized barrier to adequate NCD care, even before the pandemic. Insulin is a 100-year-old drug whose wholesale price has tripled in ten years. Now, as millions of people are being pushed into poverty during the pandemic, high cost of medicines can have tragic consequences. In addition, supply chain disruptions are threatening delivery of essential medicines, from insulin to psychotropic drugs.
“Globally, we’re hearing reports that the pandemic has disturbed supply chains to multiple LMICs, especially those in rural areas. Financially, it has been catastrophic for many who rely on work to purchase insulin and other forms of essential care for themselves and their families,” said James Elliott, a Trustee of T1International.
“For Americans who have depended on driving to Canada to obtain more affordable insulin, many are now in a desperate situation due to the closure border. That so many politicians are content to ignore their citizens with diabetes is shameful,” he added.
If a 100-year old insulin is still unaffordable, what guarantees do we have about the affordability of new Covid-19 vaccines?
Commercial determinants at play
Commercial determinants of health are defined as “factors that influence health which stem from the profit motive.” From aggressive marketing of sugar to opioids, these determinants play a huge role in shaping population health.
“The Covid-19 pandemic has given industry the chance to market harmful products (tobacco, alcohol, guns) liberally to the population and even have them deemed “essential” businesses! These commercial determinants of health are going to wreak havoc in society for NCDs,” said Adnan Hyder, a Professor of Global Health at George Washington University. Indeed, there are data suggesting that alcohol consumption as well as cigarette smoking have shot up during this crisis. This could increase rates of various cancers as well as heart disease, stroke, and chronic obstructive lung disease.
Renaming, reframing and relaunching the NCD agenda
According to the Global Burden of Diseases (GBD) forecasting study, for most countries, prioritizing NCDs and NCD-related risks in health planning and investment decisions has the potential to markedly reduce premature mortality by 2040.
Although everyone in global health acknowledges the current and future global burden of NCDs, it has been a struggle to get donors and country governments to do much about them. Even the term “non-communicable” is vague, mixes many different conditions, generates confusion, fails to elicit any sense of urgency. Although calls have been made to re-name NCDs, the term is still widely used.
NCDs are seen as an inevitable consequence of ageing and epidemiologic transition. Or they are seen as a problem that arises from individual behaviors (e.g. smoking, alcohol, lack of physical activity, eating junk food). This victim blaming is used by governments, health bodies and big business from absolving themselves of any blame for the NCD epidemic.
To gain traction, efforts were made to come up with simple, catchy strategies such as the 4 x 4 approach, driven by analyses to identify the “best buys” which would be cost-effective and feasible in LMICs. This approach then expanded to become the 5 × 5 approach to NCDs. This strategy targets 5 diseases (cardiovascular disease, cancer, diabetes, chronic respiratory diseases, and mental ill-health) and 5 risk factors (tobacco and alcohol use, unhealthy diets, physical inactivity, and air pollution).
But, Jaime Miranda, a professor at the Universidad Peruana Cayetano Heredia says “this ‘simplistic’ approach, which was useful at one point, is leaving behind some groups, particularly the poorest ones, whose NCD burden is different from the 4×4.” We need to better understand what happens, in terms of NCDI, among the planet’s poorest billion, he argues.
To address this gap, The Lancet NCDI Poverty Commission was launched in 2016 and published last month. According to this report, for the poorest in the world, NCDs and injuries (NCDIs) account for more than a third of their burden of disease; this burden includes almost 800 000 deaths annually among those aged younger than 40 years. Among the poorest billion, people with a diverse set of severe NCDs – such as type 1 diabetes, rheumatic and congenital heart disease, and pediatric cancers – live 20 fewer healthy years than in high-income countries. Yet less than US$100 million – or just 0.3% of development assistance for health – is allocated to NCDIs among countries comprising the poorest billion.
The poorest also pay a lot for NCD care, leading to further impoverishment. The Commission found that despite already living in extreme poverty, between 19 million and 50 million of the poorest billion spend a catastrophic amount of money each year in direct out-of-pocket costs on health care as a result of NCDIs.
I asked Gene Bukhman, one of the Commission’s co-chairs on his biggest takeaways from the Commission. He heads the Program in Global NCDs and Social Change at Harvard Medical School. “For me, the big-take away from the report is that we discovered that NCDs and injuries are the biggest gap in universal health coverage for the poorest countries,” he replied.
Finding solutions to address the growing NCD epidemic
“It has never been reasonable to expect poorest countries to have the domestic resources to address NCDIs equitably,” said Bukhman. “So there really is a need for a global response just as there has been for other diseases of extreme poverty like malaria,” he argued.
Bukhman points out that the face of NCDIs has been coronary artery disease and road traffic injuries. These conditions are easier to dismiss as preventable consequence of aging, unhealthy lifestyles, and development itself. The Commission highlights another face of NCDIs: conditions that kill and maim the poorest children and young adults: conditions such as type 1 diabetes, rheumatic and congenital heart disease, pediatric cancers, sickle cell disease, severe mental illness, burns, and trauma in its varying manifestations.
The NCDI Commission had several key messages to address the major concerns identified:
- Progressive implementation of affordable, cost-effective, and equitable NCDI interventions between 2020 and 2030 could save the lives of more than 4·6 million of the world’s poorest, including 1·3 million who would otherwise die before the age of 40 years.
- To avoid needless death and suffering, and to reduce the risk of catastrophic health spending, essential NCDI services must be financed through pooled, public resources, either from increased domestic funding or external funds.
- National governments should set and adjust priorities based on the best available local data on NCDIs and the specific needs of the worst off.
- International development assistance for health should be augmented and targeted to ensure that the poorest families affected by NCDIs are included in progress towards universal health care.
“The pandemic has exposed the myth that extreme poverty was disappearing. In the case of NCDIs is not enough simply to say we must preserve existing services. These services must be built and financed for the first time,” Bukhman argued.
Meanwhile, across LMICs, healthcare providers and implementers are finding their own strategies to deal with the realities of the pandemic, and working hard to keep NCD services alive.
“We need to identify people living with NCDs, provide them with health system support through telemedicine, digital interventions to manage their NCDs, and help them quit tobacco and alcohol as immediate steps to protect them from the current crisis,” said Monica Arora, a professor at the Public Health Foundation of India.
In Kenya, Jemima Kamano and Rajesh Vedanthan are trying to “leverage patient and peer support groups to help with education, mobilization of resources, and self-monitoring.” They have also initiated efforts to accommodate longer-term disruptions in the traditional model of NCD care, by developing tele-medicine services.
Viswanathan Mohan’s experience in India suggests that telemedicine holds promise, but he argues that the technology needs to be more accessible and acceptable to patients. Home delivery of medicines, use of e-pharmacies, digital adherence technologies, multi-month dispensing of medicines, and greater use of home-based testing & monitoring are other approaches being tried out.
Yogan Pillay in South Africa advocates for getting rid of the “the false dichotomy between communicable and non-communicable diseases” and encourages everyone to “treat every patient holistically and invest more in NCD research as well the prevention, treatment and rehabilitation of those with NCDs.”
Indeed, the Covid-19 pandemic is a great example of why the world cannot continue to see problems as black or white (“communicable” vs. “non-communicable”), and pit one set of health problems against others. People can have diabetes and end up with Covid-19 or tuberculosis. People living with HIV infection can and do end up with lipid abnormalities.
So, even as we fight infectious threats, we must find a way to manage NCDs and advocate for universal health coverage. The pandemic has shown us that UHC is not a luxury – it is a non-negotiable human right. And without health, nothing matters.