The theme for Rare Disease Day 2019 is ‘Bridging health and social care’. We asked people from the rare disease community (patients and family members) in India what services they would like to see improvement in? And their biggest wish for 2019. Here is what they had to say.
Prasanna Shirol, Co-founder ORDI and father of child with Pompe disease would like the following policy changes from the government
- Compulsory New born screening in the country
- The supportive care is also included in all the government schemes like Ayushmanbharat Scheme,
- No barrier on Above Poverty Line / Below Poverty Line category for Rare Disease community,
- Including Medical disability as a criteria for inclusion in Person with Disability Act to get the benefit (Not just on Physical disability).
- Monthly pension of minimum Rs 5000 to persons with Medical disability.
- Strict Implementation of accessibility norms in Public Buildings
- Special facility to parents with Rare disease child, facility of Care taker support etc
- 100% Income tax exemption for parents with Rare disease child
Most of all, implementation of a Rare Disease Policy in India and the commencement of treatment for all the treatable rare diseases.
Payel Bhattacharya who has a rare condition von Hippel-Lindau(VHL) :
Rare disease patients who need life saving surgeries and medicines should be given these free of cost.
Those with rare diseases which need vigilance through radiological and laboratory tests should get some financial support.
I can’t say about other rare diseases but I think I have good doctors and it’s because of their treatment my lifespan has been prolonged. I wish the government can understand my situation and allow me free treatment in the hospital that works best for me
Payel Bhattacharya battles her condition VHL like a warrior.
Hitesh Chowhan – father of a child with Duchenne Muscular Dystrophy
We live in India and in the field of Rehabilitation and Support , I would like to see improvement in access – like more wheelchair friendly buildings, restaurants, public parks, pubilc toilets, railway stations and all public amenities.
Most of all I wish we find some sort of therapy or medicine which will cure my son from this deadly disease.
Read his son’s story: A wish for a magic wand to shoo away my son’s Duchenne Muscular Dystrophy
Rashmi Hosangady who has a teenage daughter with Benign Heriditary Chorea
I would definitely like to see improvements in Speech Therapists who offer services for neurological conditions.
Guidance by counsellors to deal with the psychological aspect of being lonely and marginalised due to disability of speech.
Additionally, there should be support group for like minded individuals within the same Neuro condition. Difficult to find as Benign Hereditary Chorea itself is a rare genetic condition and may be undiagnosed in the population. Some forum where as parents we could seek advice and get alerts to new advances in the medical research related to her disorder
But most of all, I would simply love that there would be some light on how to deal with the symptoms related to her disorder. To be able to reach out to research teams who might be privy to cutting edge technology for patient support. To be able to have our voice heard in the movement disorder societies who may have a solution and hope most of all for a reversal of symptoms.
Read her account : We struggled for 10 years to find out what was wrong with our child
Cure SMA India requests:
Dear friends who have Twitter account please tweet for our children of Cure SMA India who are suffering from spinal muscular atrophy, a rare degenerative crippling neuromuscular disease. Treatment of this disease is not available in India. Only approved treatment is exorbitantly priced.
Use #BattleAgainstSMA.
Show your support for the rare disease community by sharing this
https://www.patientsengage.com/news-and-views/rare-disease-2019-we-wish-better-services-treatment-options-financial-support
