As resources are prioritized to prevent the spread of the novel coronavirus, individuals living with special needs, chronic conditions, rare diseases, and cancer may have been unintentionally left behind.

A pandemic which amplifies neglect and challenges

According to the major health insurance company Cigna, hospitalization were reduced by 35% for atrial fibrillation; 28% for epilepsy and seizures, and 24% for gastrointestinal bleeds since lockdown measures were imposed across the US. There has also been a significant decline in cancer screenings. Comparing the first 15 weeks of years 2019 and 2020, breast cancer monitoring were reduced by 17.4% while tests for cervical cancer and ovarian cancer were dropped by 68.2% and 33.8% respectively.

Overall, in the month of March alone, the number of newly diagnosed cancer patients were decreased by 31%. Similarly, among the 25 million people with rare diseases in the US, 95% felt their long-term health and well-being are at risks and 69% worried their medical supply may be in shortage. Although vulnerable individuals are able to receive acute care at clinical settings, they are unnecessarily put at risk for infection, particularly if they are treated at facilities which regard everyone coming into the emergency service as a possible COVID-19 patient.

On the other hand, those who are kept at home where they are given care are not spared either. Based on the figures obtained from the New York Department of Health, Pennsylvania Department of Health, Pennsylvania Office for People with Developmental Disabilities, and New York Office for People with Development Disabilities, individuals with intellectual disabilities and autism are four times more likely to be infected and more than twice as likely to die from COVID-19, probably due to insufficient funding, manpower and neglect.

We need more than just pandemic related data

Technology saturation is making big data ubiquitous but not inclusive. The World Bank’s 2016 World Development Report said nearly 60% of the world’s population remain offline and can’t fully participate in the digital economy. Often, digital divides across gender, geography, age and income dimensions within each country. Phil Crehan, Social Inclusion and Economic Development Consultant wrote on the World Economic Forum that some of the COVID-19 responses exacerbate existing stigma and further exposed vulnerabilities in certain groups. He advocates more data for inclusive and empathetic help.

Crehan proposed more attention to be paid towards communities in need and speak with organizations that “operate at the intersection of social exclusion”. Most importantly, cater more funding for innovative data collection and considered disaggregated data which facilitate better and more informed actions. Indeed, both World Health Organization (WHO) and Pan American Health Organization (PAHO) also supported the collection of disaggregated data or information captured in smaller units to reflect underlying trends and patterns.

Data grouped by demographics, geographic area, ethnicity or socioeconomic variables will shed light on smarter and more effective crisis response. In fact, back in 2015, United Nation had already called for a “data revolution” for sustainable development as more and more private companies are capturing and monetizing data. Social exclusion in any manner is costly to our economy and social advancement in the long run. World Bank estimated the pandemic will push between 40 and 60 million people into extreme poverty.

As the second wave of COVID-19 is believed to be hitting the capital of China, let’s hope that those who are struggling because of non-COVID related diseases and challenges, will not turn into the third wave.


Author Bio

Hazel Tang A science writer with data background and an interest in the current affair, culture, and arts; a no-med from an (almost) all-med family. Follow on Twitter.