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🇺🇾 Uruguay /Elections & Politics

Rare diseases provision added by lawmakers raises doubts at Health Ministry and criticism from senators

From El País · () Spanish

Translated from Spanish and summarized by DistantNews. Read the original for the full story.

At a glance

News Named sources Context piece
  • Uruguay’s Chamber of Representatives added a provision requiring the Public Health Ministry to submit a plan for a rare-disease diagnosis and research unit within 120 days of the law’s promulgation.
  • Health Minister Cristina Lustemberg said the ministry had not been consulted and questioned the provision because it creates actions without associated funding.
  • Senators also criticized the article, while stressing that existing support for people with rare diseases should not be weakened.

A provision on rare diseases added by Uruguay’s lower house has drawn doubts from the Public Health Ministry and criticism from senators as the measure moves through the Senate.

The article in the government’s accounts bill instructs the ministry to prepare a proposal for a unit focused on diagnosing and researching rare diseases. It gives the ministry 120 days after the law’s promulgation to submit the proposal to the executive branch, along with an implementation timetable and a list of the resources required.

already provides universal coverage for some rare diseases

· Cristina LustembergThe health minister told senators that the existing health system already covers some rare diseases.

Health Minister Cristina Lustemberg told senators that her ministry had not been asked for its opinion before the provision was added in the Chamber of Representatives. She also said the National Integrated Health System already provides universal coverage for some rare diseases and that the ministry had been working on the issue for some time.

raises some doubts

· Cristina LustembergLustemberg explained her concerns about creating actions without an associated budget.

Lustemberg said the article “raises some doubts” because it creates a unit and sets out actions without providing a corresponding budget. She said the ministry would work on adapting and regulating the provision in line with measures already under way.

Laura Llambí, the director general of health, told the budget and finance committee that Uruguay already has a national reference center for congenital defects and rare diseases, known as Crenadecer, under the Social Welfare Bank.

This is an incredible article; we are forcing you to submit a proposal to yourself.

· Pedro BordaberryThe senator criticized the provision’s wording and questioned the need for legislation.

Senator Pedro Bordaberry largely agreed with Lustemberg. He said the article does not itself create a unit, but asks the ministry to prepare a proposal, and questioned whether legislation was needed to request such an initiative. Senator Javier García called the provision unnecessary. Graciela Bianchi described it as incoherent for Parliament to tell the executive branch what to do, while saying her greater concern was that rare-disease policy should not take even one step backward.

not take even one step backward on the issue of rare diseases

· Graciela BianchiBianchi said her main concern was preserving progress on rare-disease policy.
About this summary

Originally published by El País in Spanish. Translated, summarized, and contextualized automatically by DistantNews, with a note on how the source frames the story. Not individually reviewed before publishing. How this works.

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