“I am perfectly willing to say this publicly: anyone who has genuine, sincere questions and a real desire to understand this issue, rather than to manipulate emotions, is welcome to meet with me at the Ministry, where we can provide personal answers to any question they may have,” declared Georgia’s Health Minister Mikheil Sarjveladze, addressing a plenary session of Parliament.

Sarjveladze affirmed that the process of reviewing treatments for Duchenne muscular dystrophy will continue without interruption.

“The moment there is sufficient foundation and basis for a decision to be made, no one will delay that decision. We are criticised, and yet under this government, the oncology budget has increased approximately a hundredfold, and someone is suggesting that the authorities are reluctant to spend money on people’s health? That is a blatant falsehood. We must continue to work diligently, gathering information intensively, on each individual medication. This must go on, and it is precisely what we have been doing in recent days, and indeed well before this issue acquired a certain urgency, before it became visible to the wider public. We are in communication with experts and regulatory bodies in other countries. We are conducting intensive research, and there is concrete evidence to demonstrate it,” the Health Minister stated.

“The whole of the opposition is rooting for parents to remain standing in the street whilst nothing gets done. That suits them perfectly, and whether consciously or not, they are serving this cause most dishonestly, because it is from this that they seek to harvest political dividends. We will not permit that, and for that very reason, the Ministry will continue working towards results, not towards scoring political points.

Some people genuinely care and feel true compassion for these patients, and we count ourselves among them. At the Ministry, we became engaged and began working on this matter at a time when it fell within no one’s sphere of interest, save the patients themselves and their families. I must use this platform to attempt to tell Parliament and the public the truth on the most important questions surrounding this issue, however bitter that truth may be. It must be said plainly: the price of the medication is neither a primary nor a secondary concern for us, though it does generate considerable commercial interest among those who seek to profit from the situation. Yes, when tens or hundreds of millions of Laris are at stake, that is reflected in the aggressiveness of the marketing,” Sarjveladze declared.

The Minister emphasised that the central question must be the extent to which the medication can deliver benefit without creating fatal risks.

“I wish to state once again, unequivocally, that the function of these medications is to delay the need for a wheelchair. I will say here and now that this outcome alone would be significant were it not for the unanswered questions surrounding safety and efficacy. It would be wrong to hold false expectations regarding this medication. It is immoral to cultivate false hope in desperate parents. Indeed, when someone knows full well what they are talking about, is aware of the shortcomings involved, and yet continues to generate false expectations, that is immoral.

Those who draw the conclusion that we regard delaying the need for a wheelchair as an insufficient aim are simply lying. Let me emphasise once again: any improvement that a medication can provide is undoubtedly of great significance, as long as it is genuine and the medication does not pose life-threatening risks. Simply spending money will not help these patients. What will help a child is the right and effective treatment. The only question worth examining is whether this medication can deliver genuine benefit without creating fatal risks,” Sarjveladze declared.