Health Secretary Neil Gray is under intense scrutiny after allegations surfaced regarding his gross neglect of families grappling with muscular dystrophy, a debilitating condition marked by progressive muscle weakness. The outcry stems from his apparent indifference to an urgent plea from legal representatives of these families, who are fighting for access to Givinostat, a pivotal drug that could significantly slow the progression of Duchenne muscular dystrophy (DMD). Despite English health boards having instituted an early access programme, the drug—offered at no cost by its manufacturers—remains inaccessible via the NHS in Scotland.

Duchenne muscular dystrophy predominantly affects boys, drastically curtailing both life quality and expectancy, which averages a pitiful 26 years. Alarmingly, fewer than 30 Scottish children stand to benefit from Givinostat treatment, yet not a single health board has dared to act.

Families impacted by this devastating condition have voiced their utter frustration at Gray’s failure to respond to a letter sent by lawyer Aamer Anwar on March 21, seeking urgent assistance for these children. Meanwhile, Gray busied himself engaging with light-hearted topics on social media—such as youth football and local infrastructure—while children’s lives hang in the balance. As Michael Harvey, a father battling for his seven-year-old son’s access to the drug, pointedly noted, “If only these boys with life-limiting conditions were an under 13s football team, they would get two responses in three days.”

Mhairi Harvey, Michael’s mother, did not hold back in her condemnation of the situation, remarking, “This life-changing, safe, and free medication is being withheld from patients while a tug of war over staffing ensues.” Such an oversight speaks volumes about the misguided priorities of the current government, which now stands more concerned with internal squabbles than the welfare of its citizens.

In his pointed letter to First Minister John Swinney, Anwar emphasized the urgency of the crisis and the mounting dissatisfaction among families due to Gray’s inaction during this critical time. “It surely cannot have escaped Mr. Gray’s notice as Health Secretary that the headline of a national newspaper directed at him was ‘Save Our Kids’,” Anwar asserted, demanding immediate intervention and proposing that families should not only meet with him but with Gray himself to ensure that their children are given the priority they deserve.

With around 200 children in Scotland afflicted by DMD, the situation raises pressing questions about the government’s health policy and ultimately its commitment to delivering timely access to potentially life-saving treatments. As the clock ticks, these families persist in their fight for justice and proper medical support, all while the ruling authorities continue to exhibit a shocking disregard for their plight. The path ahead remains bleak without a robust opposition to challenge the inadequacies of the current regime and advocate for the most vulnerable in society.

Source: Noah Wire Services