A Rare Opportunity Editorial 11th Apr’19 IndianExpress

Headline : A Rare Opportunity Editorial 11th Apr’19 IndianExpress 

Details : 

Rare diseases:

  • A rare disease affects a small percentage of people.
  • Most rare diseases are chronic and severe, leading to death or disability.

Problems in diagnosis, understanding and treatment:

  • 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.

Needs support of government:

  • The issues related to rare diseases can only be overcome by strong support from the government.

National Policy for the Treatment of Rare Diseases suspended in 2018:

  • However, in 2018, the Union government suspended the National Policy for the Treatment of Rare Diseases.
  • This came as a shock to those patients who were relying on the money allotted through the policy for life-saving treatments.
  • The Centre said that the current policy for rare diseases needed to be reframed due to challenges in implementation and costs.
  • The Union Health Ministry termed the policy “untenable” as the implementation of the policy was moved out of the Public Health Division to the National Health Mission (NHM).

Low public health expenditure necessitated this decision:

  • India’s meagre 1.15 per cent of GDP allocation to healthcare means government has to make a decision of “balancing” disease incidence.
  • In this, rare diseases lose out due to the high cost of treating them.

But patients with rare disease should not be discriminated against due to costs:

  • A utilitarian calculation is not the right basis for public policy because it perpetuates marginalisation and subverts the state’s duty to treat its citizens equally.
  • The Delhi High Court recognised the rights of rare disease patients, and said that low disease incidence cannot be the state’s basis for denying someone the right to life enshrined under Article 21 of the Constitution.

Need a new rare disease policy:

  • The Delhi 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.
  • Policymakers will have to address fiscal constraints without devaluing lives of patients with rare diseases.

The new policy should be different from the earlier policy:

  • The government should create a new policy that is based on different fundamentals.
    • Attention should be on all rare diseases: The earlier policy had a narrow focus on allocating funds to treat a select few rare diseases that could be treated, while it excluded untreatable diseases. This is problematic as only 5 per cent of all rare diseases are treatable, and thus effectively excludes 95 per cent of rare diseases from its purview. The new policy should deal with this.
    • Greater resources: 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, while simultaneously bringing down the costs of current treatments.
    • More research: 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.
  • Take care of cost of treatment: Giving incentives to pharmaceutical companies to develop treatments for rare diseases has resulted in discovery of treatments but their cost is prohibitively high. In India, where most patients are un-insured and rare diseases fall outside the insurance system, this increases patient dependence on government financing. Ways must be found to incentivize discovery of new treatments while keeping treatment costs affordable.

Conclusion:

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