A rare opportunity

Recent developments have not given the rare disease community much to celebrate. The suspension of the National Policy for the Treatment of Rare Diseases was a rude shock, particularly for those patients who were relying on the money allotted through the policy for life-saving treatments.

A rare opportunity

What is a ‘rare disease’?

  • A rare disease affects a small percentage of people. Most rare diseases are chronic and severe, leading to death or disability.
  • Since these diseases are not found commonly, doctors are typically unaware about them and therefore either misdiagnose or do not diagnose them.
  • This further decreases recorded incidence of the disease, which in turn diminishes interest in understanding the disease and finding treatments for it.
  • This cycle of neglect can only be overcome by strong support from the government.

Concern in India –

  • Unfortunately, India’s suspended rare disease policy has reinforced the premise that there is an implicit calculation as the high “opportunity cost” of treating someone with a rare disease is considered a sound basis for negligible governmental spending on rare disease.
  • While it is impractical to ignore fiscal constraints, India’s meagre 1.15 per cent of GDP allocation to healthcare amplifies this dilemma and turns it into a decision of “balancing” disease incidence.
  • However, the Delhi High Court has categorically stated that low disease incidence cannot be the state’s basis for denying someone the right to life enshrined under Article 21 of the Constitution.
  • The HC has also demanded that the government promptly frame a new rare disease policy that incorporates global best practices. To respect the HC’s directions, a new policy must be founded on non-discriminatory ideals.

What should be there in the policy?

Policymakers will have to address fiscal constraints without devaluing lives of entire patient populations. The government should create a new policy that is based on different fundamentals.

  • A new and inclusive rare disease policy should allocate substantial resources to research for the development of new platform therapies that could commonly treat different rare diseases, with the additional possibility of simultaneously bringing down the costs of current treatments. More research will also facilitate greater interest in rare diseases in the medical community, increasing rates of diagnosis and improving medical care.
  • Increased focus on research could help develop cheaper treatments. Giving incentives to pharmaceutical companies to develop treatments for rare diseases has resulted in treatments being priced very exorbitantly.
  • In India, where most patients are un-insured and rare diseases fall outside the insurance system, increased drug prices through patent protection will further increase patient dependence on government financing.

Way forward –

The government must not abandon the rare disease community to the market mechanism. Low incidence makes rare diseases “unprofitable” and companies are reluctant to invest in them.

SourceThe Indian Express

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