Georgian Dream health minister: Patient care should not be part of political agenda

Georgia’s health minister on Duchenne disease

Mikheil Sarjveladze, health minister from the ruling Georgian Dream party, sharply criticised the opposition during a parliamentary session, saying it was trying to politicise the issue of patients with Duchenne muscular dystrophy while the ministry, in his words, was focused on delivering practical solutions.

The minister said “the opposition only applauds parents who take to the streets and does nothing”, arguing that serves political interests.

Sarjveladze said the ministry began working on the issue of children with Duchenne muscular dystrophy long before it entered wider political debate. He said progress should rely not on public confrontation, but on cooperation with patients and their families in order to make treatment more effective.

'We have very little time': How children with Duchenne muscular dystrophy in Georgia are fighting for their lives

For a year, parents of children with a rare and severe genetic condition have been urging the authorities to allow the import of costly medicines.

Minister’s remarks on Duchenne disease in Georgia

A large part of the minister’s remarks focused on what he called “widely spread misinterpretations”. He firmly rejected accusations that he had told a parent a patient with limited life expectancy did not deserve medication. Mikheil Sarjveladze said such claims were “simply false” and that neither he nor ministry officials had ever said anything of the kind.

At the same time, he stressed price was not the decisive factor in choosing a drug, although high costs, he said, create strong marketing incentives for groups seeking financial gain in this area. In the minister’s view, the issue is far more complex and requires a clear assessment of a drug’s effectiveness and safety.

Sarjveladze also criticised the idea that the ministry was looking only for medicines offering a complete cure and attached no value to other outcomes. He said any improvement, including temporary stabilisation of a patient’s condition, matters. But he added such outcomes must be clearly proven and must not involve serious risks.

Opinion: 'Funding treatment for Duchenne muscular dystrophy in Georgia is a matter of priorities'

Parents of children diagnosed with Duchenne muscular dystrophy are holding protests outside the government administration, demanding access to medication.

The minister focused on what he described as “raising false expectations”. He argued it was immoral to make exaggerated promises to desperate parents, especially when questions remain over a drug’s effectiveness or possible side effects.

“Patients cannot be saved simply by spending money. A child will be saved by the right and effective treatment. The key question is whether a specific drug can help without putting a patient’s life at risk,” Mikheil Sarjveladze said.

‘Give children medicine’ – chosen theme for pro-European march in Tbilisi. Video/photo blog Protests in Georgia

The traditional Saturday pro-European protest march in Tbilisi demanded state budget funds for medicines for children with Duchenne muscular dystrophy

Context

For months, parents of children with Duchenne muscular dystrophy have staged protests outside the government chancellery, demanding access to medication. Duchenne is a rare genetic disorder marked by muscle wasting and weakness.

According to Together Against Duchenne Muscular Dystrophy, about 100 children in Georgia have been diagnosed with the condition. The group says one to three children die from the disease in Georgia each year because of inadequate treatment and lack of medication.

Georgia’s health minister on Duchenne disease