Politicians and their families suffer from lethal diseases just like the rest of us. Any person or family may suddenly find themselves facing a lethal disease, without warning. Like us, members of government know that we need to act as a community to create the widespread political will that is needed for change. None of us is under any illusions – the challenge is daunting. Elected officials are notoriously risk averse and focused on keeping their seats. Our requests are easily cast as politically hazardous.
It is difficult for elected officials to make major changes unless the public have given them permission to do so, so we need to make sure they know that we collectively feel that change is essential. The reforms we are seeking are reasonable – and will save lives and alleviate suffering. Political inertia or indifference increases the risks faced by patients with lethal diseases – and ignores the fact that we are all in this together.
We want patients to have access to promising, safe therapies while they are still in clinical trials. Possible ways to achieve this include expanding eligibility criteria and making trials much more broadly available so that patients have easier access, at the same time that Special Access Programmes are greatly expanded and simplified.
LSTN does not have a partisan axe to grind. Instead, it engages and educates politicians from all parties to adopt expanded access to therapies as one of their key priorities. We have hosted and participated in panels featuring elected officials. We have attended gatherings at Parliament Hill and provincial legislatures to raise awareness. We have had one-on-one meetings with legislators and their staff.