CSR Boost For Treatment Of Rare Diseases
Medical treatment has made numerous advancements in the recent past. These breakthroughs have led to better and more effective diagnosis and treatment of diseases, even of those which were considered untreatable just a few years back. This is primarily true in the case of rare diseases.
Rare diseases are those which affect a small percentage of population. They are usually chronic and progressive and because of their complexity, it becomes very difficult to diagnose and treat them. Fortunately, there have been various innovations due to which now there are targeted therapeutic treatments available.
Although this is good news, flip side is that the treatment which is available for these diseases is often expensive and hence, cannot be afforded by most of the patients. The treatment cost starts from a few thousands and runs into lakhs and crores depending upon the patient. It is a fact that, traditionally, patients suffering from rare diseases have had very little hope of receiving appropriate treatment.
To further add to the burden, these patients are not covered under insurance. While the government is taking steps in this direction by proposing interventions like setting up of corpus funds for diagnosis, treatment and supportive care (most of the patients require supportive care like physiotherapy, monthly tests) it is clear that the government alone would not be able to take care of it. This is where the role of Corporate Social Responsibility (CSR) - a certain set of initiatives undertaken by a company to make a positive impact on society- comes into picture.
Corporations should take this as an opportunity to collaborate with the government to play a key part in improving the diagnosis and treatment of rare diseases. There is already a CSR initiative being done in each state. There is, thus, a unique opportunity for companies to contribute for rare diseases as this is one area where not enough has been done in terms of CSR.
To begin with, the state should formulate a statement inviting corporates to contribute to the common fund (like a hospital fund which can further finance the treatment). For example, in Karnataka, the state government requested IT companies to make contributions under CSR. Similarly, steps can be taken by other states wherein they can request various industries to provide assistance for long-term patient programmes.
Moreover, companies can also help individual patients by financing their treatment through patient adoption programs. In this case, they can also involve their employees by requesting them to make certain contributions for the treatment of that particular patient. In fact, there are a few companies which have taken such initiatives. Additionally, companies can partner with NGOs dedicated to the cause of rare diseases and sponsor certain patients based on their recommendations.
By such partnerships, the companies can also be a part of the decision making process. Since the treatment involves a huge amount of money, a small committee can be formed comprising of the company representatives, medical experts and the patient group which can decide as to which patient needs immediate treatment. A systematic set of processes can be put in place for long-term commitment.
Evidently, CSR funds can hugely benefit the treatment of rare diseases and can provide immense relief to the patients. It should be remembered providing treatment for maximum rare disease patients is a herculean task. What is, thus, required is for a larger number of companies taking up CSR initiatives to contribute towards the medical treatment of such diseases.
