Dr Ramaiah Muthyala, President & CEO, Indian Organisation for Rare Diseases, and associate professor, Experimental Clinical Pharmacology, University of Minnesota, US suggest that as rural health care providers struggle financially to care for relatively low volume diseases such as rare diseases, new strategies like a change in the financial model, where for example, providers receive support regardless of patient volume, can be considered
In the fog of war against pandemics, COVID-19 gets world’s attention imposing additional burden to nations’ healthcare systems in particularly it hit hard on rare disease patients. COVID-19 and rare diseases (RD) have similarities and differences, yet share many everyday needs and wants of common and rare diseases patients.
The COVID-19 can infect anyone, anywhere and is preventable. Rare diseases are neither pandemic nor preventable but are worldwide. They are genetic disorders and considered rare; around 80-90 million people in India alone, are effected by more than 7000 rare diseases. Only five per cent of them have treatments but no cures. Unlike COVID-19, they are lifelong diseases.
For both – rare diseases and COVID-19 socioeconomic status play an important role and desire a timely diagnosis, and treatments. There is global cooperation and collaboration to fight against COVID-19 due to pandemic nature. However, such efforts with rare diseases are not yet gathered momentum, although rare diseases are recognised for more than half-century.
In developed and developing countries, urban rare diseases’ patients get equivalent healthcare to their economic status, whereas it is not the case with rural patients. The welfare of rural communities is vital to our nation. More than 60 per cent of people live in rural India. The RD are expected to be disproportionally higher in rural than urban areas. Greater than 75 per cent of health infrastructure and other health resources are concentrated in urban areas for less than 25 per cent of the population. When the the problems of rare diseases in these economically less fortunate communities are already challenging, the healthcare system has focused on the new pandemic. Health inequity exists between rural and urban areas, which must be addressed at the national state and district levels.
Welfare of rural community
The existence of rare diseases patients is not recognised due to lack of awareness, and information. The burden in rural areas is invisible. Further, stigma is attached to genetic disorders. Slow or lack of mobility of people, the inbreeding, and consanguineous marriages in rural communities tragically lead to hot spots for rare diseases. The rural communities typically have less of everything– fewer physicians, clinicians, and resources, etc. The obstacles faced by patients and health care providers are vastly different from those in urban areas. Economic factors, cultural and social differences, educational shortcomings, lack of recognition by legislators, and the sheer isolation of living in remote areas, collude to create health care disparities.
About 75 per cent of health infrastructure, medical manpower and other health resources are concentrated in urban areas where 27 per cent of the population live. To improve the this dominant situation, the problem of rural health is to be addressed both at macro (national and state) and micro (district and regional) levels. Rural residents who live below the poverty level, rely more heavily on seasonal and labour-intensive work, and have considerable difficulties reaching health care providers in urban areas. Today, rural health services are in dire need of well-trained primary care physicians providing care for health conditions, including lesser-known rare diseases.
At the declaration of Alma-Ata (USSR 1978), the primary health care concept was conceived. It emerged as a significant milestone of the 20th century in the field of public health. Since then, it has been accepted by member countries of the WHO. In recent years, the WHO and the World Bank found its place in the United Nations’ Millennium Development Goals and Sustainable Development Goals. The primary healthcare approach with a Universal Health Coverage (UHC) has led to the ‘Asthana Declaration (2018, Kazakhstan) – “no one is left behind”.
Essential to the universal healthcare, primary healthcare remains a proven, equitable, efficient, and effective strategy to deliver holistic health for everyone. Adapting the primary healthcare principles, the Health and Wellness Centers under the domain of “Ayushman Bharat Yojna” provide holistic health. Along with the traditional primary healthcare services, the health and welfare centers include non-communicable diseases and rare disease management. The Indian government decided to transform primary healthcare centers into health and wellness centers, followed by a National Health Protection Schemes at the secondary and tertiary level; it is a step in the right direction. Proper implementation and robust primary healthcare services, will reduce dependency on secondary and tertiary care centers, thus taking India closer to achieving health-related Sustainable Development Goals.
The rural health care providers struggle financially to care for relatively low volume diseases such as rare diseases. A change in the financial model, for example, providers receive support regardless of patient volume, willingness to explore alternative models, raise the awareness, international cooperation utilise the AYUSH system of medicine for care delivery for rural populations are some of the strategies to be considered.
https://www.paho.org/English/DD/PIN/alma-ata_declaration.htm ; DECLARATION OF ALMA-ATA, International Conference on Primary Health Care, Alma-Ata, USSR, 6-12 September 1978
https://www.who.int/whr/2003/en/overview_en.pdf ;The World Health Report 2003 Shaping the Future,
https://www.who.int/docs/default-source/primary-health/declaration/gcphc-declaration.pdf?sfvrsn=380474fa_22 Declaration of Astana, Global Conference on Primary Health Care towards universal health coverage and the Sustainable Development Goals Astana, Kazakhstan, 25 and 26 October 2018
https://www.rarediseasesinternational.org/news/; https://www.rarediseasesinternational.org/un-member-states-include-rare-diseases-in-political-declaration-on-universal-health-coverage/ UN Member States include rare diseases in political declaration on universal health coverage
https://archive.org/details/GuidelinesPHC2012 Indian Public Health Standards (IPHS) Guidelines for Primary Health Centers
https://main.mohfw.gov.in/sites/default/files/Rare per cent20Diseases per cent20Policy per cent20FINAL.pdf ; https://main.mohfw.gov.in/newshighlights/national-policy-rare-diseases-2020 Ministry of Health and Family Welfare Government of India NATIONAL POLICY FOR RARE DISEASES2020