Recognise Huntington’s Disease as a rare ailment, urge HD patients and their caregivers
Demanding the Union Health Ministry to recognise Huntington’s Disease (HD) as a rare disease in a policy amendment of the National Policy for Rare Diseases (NPRD), HD patients, their caregivers and doctors on Friday submitted a memorandum to the Union and State Health Ministries.
HD is a progressive neuropsychiatric genetic disorder that causes the malfunction or death of nerve cells in the brain. As a result, a gradual decline in physical and mental abilities over time generally occurs during the middle-aged years of a person’s life. Chief among the symptoms of HD are cognitive decline (like dementia), ‘chorea’ or involuntary muscle movements, psychological symptoms and motor symptoms (eventual inability to walk and swallow food).
The disease in India is prevalent but rare – about 7 in 1,00,000 people have it. However, every child of a parent with HD has a 50% chance of carrying the faulty gene, so the ‘at risk’ population is much higher. It is not dependent on the gender of the person. In India, awareness is low, and treatment options are largely inaccessible.
Members of the Huntington’s Disease Society of India (HDSI), who gathered at Arogya Soudha in the city on Friday for the Society’s 5th foundation day celebrations, urged Karnataka Health Minister Dinesh Gundu Rao and Bengaluru Rural MP C N Manjunath to intervene and support the society in lobbying for the inclusion.
Multi-speciality clinic
“We also urge the Karnataka government to set up a multi-speciality clinic that will help diagnosis through a simple test, counselling and care during a patient’s lifetime (neurological and psychological) and palliative care. Currently, many of these facilities exist separately. Patients are not in a fit state to take care of themselves and caregivers, if they exist on the scene, are often unaware of or unable to get the right advice and medicine,” said Koushik V., HDSI chairman.
“There is provision for financial support of up to ₹50 lakhs to the patients suffering from any category of the rare diseases and for treatment in any of the Centres of Excellence (CoE) mentioned in NPRD-2021. HD is recognized as a rare disease worldwide. In India, we hope to use the benefits provided in the NPRD to avail treatment for patients. The challenge that the HD community faces here is that HD is not officially recognized as a rare disease. Most CoEs created for the treatment of rare diseases have not heard of HD,” he said.
Minister’s assurance
Responding, the Health Minister assured the HDSI members that the State government can consider coming out with its own policy to provide the required care, support and treatment to those suffering with various rare neurological conditions.
Dr. Manjunath said he would raise the issue in the Parliament and ensure that HD is included under the NPRD. Additional Director General, Union Ministry of Health and Family Welfare B S Charan; State Health Commissioner Randeep D., NIMHANS director Pratima Murthy and other doctors from the Karnataka Brain Health Initiative also spoke.
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