The COVID churn has resulted in creating a whole new class of heroes: the healthcare warriors. Rising to the challenge, the pharmaceutical and healthcare industry has exhibited boundless creativity, commitment, and resilience all over the world. Not to be left behind, India quickly rose to the challenge, virtually overnight and did wonders in face of what was almost a biblical catastrophe. Be it testing facilities, PPE kits, doctors and nurses mobilization, infrastructural supports, or even policy-wise changes, the country as one rose to the task and fronted the challenge forcefully. As we now prepare for the next phase of the pandemic challenge management, it is important to remember that health for all was and still remains a priority. In our race to resolve one issue, it would be a travesty of natural justice and of morality to miss out on others which are equally important and crucial. The 70 million rare disease patients in India must be always remembered and cared for, especially now. For India’s health, the last suffering individual needs to be included and treated.
The buzz in government and health industry circles these days is clearly the imminent vaccination against COVID. With 1.4 billion people stated to be inoculated, India is once again poised to make a record in disease control and management globally. A redux of vaccinating successfully for polio, measles, leprosy, small-pox, and so on seems to be in the offing. In all this, the danger seems to be the dark fate that could visit the non-COVID dimensions of the healthcare construct. As is already evident, there has been a reduction in the number of patients seeking non-COVID care and medical interventions for other diseases. Many patients have put off consultations for apparently non-urgent problems fearing contracting the virus. Even the World Health Organization and UNICEF have warned about an alarming decline in the number of children receiving life-saving vaccines around the world.
In all this razzle-dazzle, the case for rare diseases has been left largely unattended and is at risk of ballooning into something very tragic and alarming. There are more than 7,000 rare diseases which have been documented so far and India is among the top nations with a rare disease population where one out of 20 suffers from rare diseases. Compounding the tragedy is the sad fact that half of these sufferers are children of whom most do not live to see their fifth birthday. This is both due to unavailability of medical care due to lack of financial resources or late diagnosis. Human justice and even our own constitution mandate the right of every citizen to the highest ‘attainable health care’. There is no reason why, in the post-COVID era, we should not have a renewed focus on rare diseases.