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Treatment of rare disease patients should not be delayed, urge experts

To put focus on the need for providing treatment to rare disease patients, a round table was organised by Organisation for Rare Diseases India (ORDI) in Bengaluru. The event witnessed the presence of Mr. Prasanna Shirol (Co- Founder & Executive Director, ORDI, Dr. Meenakshi Bhat (Consultant in Clinical Genetics & Professor, Centre for Human Genetics),Advocate Ashok Agarwal (Social Jurist) and more than 10 patients who are suffering from rare diseasesand waiting for treatment
Bangalore | Written by: BNN Team | Updated: 16-12-2017 | Views: 491
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The purpose of the event was to primarily bring attention of the Karnataka government towards the plight of the patients awaiting treatment. The state government of Karnataka had released an amount of Rs. 4 crores for the treatment of patients suffering from rare diseases and they have been benefitting from it immensely for over a year. Now we are waiting for funds for next year to continue the treatment.The second round of financial help is awaited for another set of 12 patients since the past 6 months.

Commenting on this, Mr. Prasanna Shirol said, “After a PIL was filed in the Karnataka High Court, it was directed that the government should provide for treatment of rare disease patients. The initial fund given by the Karnataka government has been very helpful and the treatment has impacted the life of the patients in a very positive way. Basis this, we would like to appeal to the government to release further funding in order to ensure that all the patients receive treatment and can add value to their lives. Since the treatment of rare diseases, specifically LSDs is very expensive, the majority of the patients are unable to afford it. Thus, government intervention is necessary in these cases.We have already lost 2 children who are waiting for the treatment”

Elaborating on the need for providing treatment to the patients, Dr.Meenakshi Bhat said, “Enzyme Replacement Therapy (ERT) is the established treatment for LSDs and works by replacing the missing enzyme in the affected cells. Unfortunately, the treatment is expensive and hence, cannot be afforded by majority of the patients. Due to the unaffordability, a lot of patients get delayed or no treatment. The lack of timely and appropriate treatment hampers the daily lives of patients making them unable to conduct routine activities. In this regard, measures need to be adopted to ensure that the treatment is accessible for all.”

Strong government measures will go a long way for providing treatment for LSD patients. The National Policy for Treatment of Rare Diseases has already been approved and has various recommendations which would make it easier for the patients to get treatment. “Health being a state subject, the states should have their individual policies. In this regard, the Karnataka government has already taken a step in drafting the policy, but its implementation is still awaited. Further, under the National policy, a Rs. 100 crore funds has been allocated and now it is the states’ responsibility to come forward and request for funds from the same for the treatment of rare disease patients. With the Karnataka policy on its way, the funds need to be requested without further loss of time.” Said Advocate Ashok Aggarwal.

The event was also a platform for the patients to discuss their individual journeys and to showcase how treatment has helped them lead almost normal lives. Some of the patients present were awaiting treatment and took this occasion as an opportunity to appeal to the government to provide them relief on an urgent basis. 

For More Information Contact :

Mr Amrith Jogi / E-Mail :

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