Autoimmune Patients Demand Government Action for Recognition

In Karnataka, patients suffering from over a hundred types of incurable autoimmune diseases face significant challenges, as the government has yet to establish a registry to track these conditions. Diseases such as lupus, rheumatoid arthritis, and multiple sclerosis have lifelong impacts, yet the lack of basic data on their prevalence leaves many without necessary support and attention.

Autoimmune diseases encompass a wide range of health issues, from thyroid disorders to severe conditions like childhood diabetes and systemic lupus erythematosus, which predominantly affects young females aged between 16 and 30. The absence of a comprehensive registry not only hinders patient visibility but also complicates healthcare planning and support structures.

Challenges Faced by Autoimmune Patients

Many patients are caught in a cycle of suffering as they struggle to access necessary treatments. According to Dr Chandrashekara S, president of the Indian Rheumatology Association, existing government schemes, such as Arogya Karnataka, provide coverage for systemic lupus erythematosus only after significant damage, such as kidney impairment, has occurred. “Why should patients suffer further damage to avail services?” he questioned.

Additionally, insurance coverage for autoimmune diseases in India is inconsistent, placing further financial burdens on patients. “After compiling a database, the government needs to implement policy changes for insurance providers to include all autoimmune diseases,” Dr Chandrashekara emphasized.

UA Vasant Rao, Managing Trustee of the Dr Shyama Narang Foundation, which supports individuals with Motor Neuron Disease, expressed concern over the lack of a registry. He stated, “The absence of a registry creates multiple hardships for patients and families. It renders patients invisible in the health system. Without official recognition, their needs are neither assessed nor addressed in public policy or healthcare planning.”

The Need for Data and Research

Dr Ravindra Mehta, a chest and sleep specialist, called for organized efforts to develop a database of autoimmune patients. He noted that autoimmune diseases, which are primarily connective tissue disorders, often lead to complications affecting other body systems. For instance, rheumatoid arthritis can initially impact the joints but may also result in lung-related disorders that are diagnosed only in advanced stages, when transplants become the only viable option.

Harsh Gupta, Secretary of the Health and Family Welfare Department, acknowledged the necessity for a registry to better understand the causes, geographical distribution, and research implications of autoimmune diseases. “We are slowly going disease by disease,” Gupta stated. He highlighted the importance of capturing comprehensive data that includes diagnosis details, genetic profiles, progression stages, and treatment information, beginning with severe lifelong diseases.

Autoimmune diseases occur when the body’s immune system mistakenly attacks its own organs and tissues. These conditions include a wide variety of illnesses, such as thyroid issues, lupus, primary biliary cholangitis, dermatomyositis, Addison’s disease, and reactive arthritis. The urgent need for a formal registry is clear, as it would not only provide necessary recognition but also pave the way for improved healthcare policies and support for those affected.