Saturday September 21, 2019

Delhi High Court Approves Health Ministry’s Proposal Rs 100 Crore Fund for Treatment of Rare Diseases

The policy proposed the formation of an Inter-ministerial consultative committee along with a technical cum administrative committee

0
//
rare diseases
Funds of Rs 100 crore allocated for the treatment of rare diseases. Wikimedia
  • Lav Aggarwal pointed out that there does not exist any particular definition of rare diseases due to the absence of epidemiological data
  • Justice Manmohan highlighted that the corpus fund of Rs 100 crore mustn’t get lapsed
  • There is a possibility of this fund getting wasted as the cycle of financial year being might now be from January to December

New Delhi, August 22, 2017: Lav Aggarwal, the Joint Secretary of the Ministry of Health & Family Welfare, delivered a presentation in the High court of Delhi to justice Manmohan. The subject of the presentation was National Policy for Treatment of Rare Diseases and it comprised all the significant details.

He pointed out that there does not exist any particular way to define rare diseases due to the absence of epidemiological data. Aggarwal added that a requirement of calculating our estimate exists as the current estimates cannot be depended upon. Along with this, he also indicated that the need of the hour is to make a balance between the primary issues of the health of the public.

ALSO READPatients suffering from rare Genetic Diseases hold Silent Protest March against Costly Treatments

While delivering his presentation, he said, “The biggest challenge with rare diseases is that they have mimicking symptoms of other diseases and thus, take years to get diagnosed. Moreover, there is a low pool of patients for research and hence, in the process of covering up for the cost of R&D, the treatment is expensive. Thus, strong measures need to be taken to make the diagnosis and treatment process easier.“ He added that considering aforesaid, the treatment of these rare genetic illnesses requires funds of about Rs 100 crore to initiate with as proposed by the policy. As mentioned in the National Health Mission, the governments at the state level must take a step forward to request the funds needed along with the names of diseases which can be provided by the central government from the corpus of Rs 100 crore.

Justice Manmohan highlighted that the corpus fund of Rs 100 crore mustn’t get lapsed. There is a possibility of this fund getting wasted as the cycle of the financial year might now be starting from January and ending in December.

Aggarwal recommended that in order to let the patients benefit directly, it would be a good step to keep the money handy for hospitals such as AIIMS. In contrast to Aggarwal, the Justice suggested that it will be better to allow money into a revolving fund in order to earn interest on this amount.

“The Honourable Court is very sensitive to the immediate implementation and utilization of the Rs. 100 crore corpus. It also rightly mentioned that the fund may be allocated and transferred to AIIMS and immediate steps need to be taken by Health Ministry to form medical expert committees of physicians at central and state levels. The states should screen and recommend patients based on standard formatted parameters and severity of the disease. “ said Manjit Singh (President, Lysosomal Storage Disorders Society). He said that the allocation of Rs. 100 crore needs to be revised and carried forward in the coming financial year as this fund is less to provide treatment to all the patients at present diagnosed with a rare disease.

The policy proposed the formation of an Inter-ministerial consultative committee along with a technical cum administrative committee. The former committee would be given the task of coordinating the initiatives undertaken by various departments and ministries. The task of the technical committee would be to manage and release the corpus funds as well as to develop technical requirements to identify and treat rare diseases. It will be set up at both the state and national levels. The committees will be formed and set up before the coming three weeks, i.e, last week of August.

Justice Manmohan, while appreciating the efforts taken by the Ministry commented, “The presentation has been very helpful in understanding the concept of rare diseases. However, some urgent orders are required to make the National Policy functional at the ground level. The two committees need to be appointed within a period of three weeks. The Ministry is directed to file a status report on or before November 30.”

Jurist Advocate Ashok Agarwal has been battling for the patients of rare disease and in his statement, he said, “The National policy is a landmark step. However, the policy can only be tested on the basis of the actual number of patients getting treatment. The patients should not start applying to the Delhi government for treatment and these applications should start getting processed.”

-prepared by Harsimran Kaur of NewsGram. Twitter @Hkaur1025

Next Story

Handy Tips To Quickly Scale Your Business

It may also mean jumping into managing sales and marketing

0
Tips, Business, Fund
It means going through various laws and compliance-related issues. Pixabay

Starting a business is hard, considering all the fund arrangements and the effort that goes into bringing it to life. However, scaling and maintaining optimum growth is, in many ways, even harder. It means going through various laws and compliance-related issues. It may also mean jumping into managing sales and marketing. However, there are ways in which you can grow your business at a faster pace. Here are a few pointers.

1. Build a sales funnel

To automate business and quickly scale it, it is very important to build a sales funnel. While there is a lot of efforts involved, especially on the end of the developers, it can help in streamlining the process and improve sales and thus, revenue. If you do not have a sales funnel, do not wait for too long to create one. Also, before settling on one, analyse the data carefully since each funnel has a different effect on the business. 

2. Use a CMS (Customer Management System)

Tips, Business, Fund
Starting a business is hard, considering all the fund arrangements and the effort that goes into bringing it to life. Pixabay

Once your business takes off, it is hard to maintain a manual record of transactions and then spending a ridiculous amount of time tracking them. Not only is it a tiring process, but it also weighs your business down. Investing in or developing a customer management system can take you a long way in reducing the time and efforts required to crunch the numbers and churn the data. 

3. Competitor Research

You should always research what you are walking into as soon as you start looking to scale your business. There might be some companies already offering something similar to what you have, making it all the more necessary to test the waters before diving. Platforms like SimilarWeb and Adbeat help in gathering information on market competition. Adbeat also helps you understand the marketing and advertising strategy of the said competition. If it is working for them, it most likely will work for you too. 

4. Launch Loyalty Programs 

Also Read- Government Experts Back Experimental Treatment for Children with Peanut Allergies

Whichever way you look at it, getting new customers to buy from you is expensive. In fact, it is said that it takes thrice the amount of money to acquire a new customer than it takes to sell your products to an existing customer. In some cases, and industries, the numbers can go up to an outrageous 10 times. This is where customer loyalty programs come into the picture as they help you in retaining customers and keep the sales steady. 

5. Build a list of email subscribers

Sending routine emails is a great way of making sure your customers know what is new and how they can benefit from the latest developments. However, this is not be done by spamming, but by making an email list. Once you have your lead magnet in place, all you have to do is place it right. Once prospective customers start subscribing, you will have enough user base to send out routine emails and spread the word out. 

6. Licensing and partnering

Tips, Business, Fund
However, scaling and maintaining optimum growth is, in many ways, even harder. Pixabay

If you have the type of product that may be licensed, then it can help your business grow without any hassles. The revenue share that you will receive from licensing deals can help you make it big, especially if larger, well-known brands are involved. This can also be done in the case of the hospitality industry, as suggested by Ryan Hibbert of Riot Hospitality Group.

Even if you do not have a product such as this, you may partner with companies with similar interests or target audience in order to increase your outreach. Spotting and closing such partnerships may be a challenge, but if done right, can reap loads of benefits. 

7. Leverage global platforms

Depending on the type of business you are running, you can capitalize on the popularity of certain other sites to boost your sales. For example, if you are in the eCommerce business, you can use Amazon’s FBA services or use Airbnb if you have a vacation home rental service. Simply, using a saturated platform to boost your business can help you a lot.

Also Read- Inauthentic Posts To Be Limited By Facebook

Scaling a business can certainly take a toll on you. However, instead of getting hassled by short term issues, focus on the long term outcomes of your work. Putting in time into understanding the behind-the-scenes operations can also give you an insight into what out to be done.