There is always a number of sobering moments as an MSIF Board Trustee. It may come with the quiet but startling realisation that Australians with MS have seemingly better access to affordable therapies than anywhere in the world. Quite literally, some countries only have scant access (at best) to the original injectables whilst in other countries, the medications are so expensive that they are completely inaccessible to most. Tales of people saving for 6 months to buy one injection are common. It may also come when you hear of the challenges of having any sort of “voice” as a person with MS in Latin America or in the Middle East. Or how there is so much incredible desire to help people with MS but some countries, including some of the wealthier ones, do not have a financial budget of any kind or any staff to help facilitate that drive.
Though far from perfect, the Australian health system is holding its own for people with MS and there is plenty to be proud of. Distant from the self gratification or indulgence of keeping our good luck to ourselves, MS Research Australia is playing a leadership part in the International Progressive MS Alliance, global research and fundraising committees and has gifted Kiss Goodbye to MS to the world – now in 11 countries with a remit to greatly increase global MS research dollars. We are now assisting with a strong global push to improve access and affordability of MS drugs. The countries that are struggling with these very issues are not always the ones that would come to mind first. Wealthy or not, first – world or third world this issue needs to be improved right now. MSIF is convening a working party to start looking at solutions.
One other particularly sobering thought was beautifully articulated by the Chairman of MSIF, Weyman Johnson Jr., at our recent London Board meeting. Weyman, a lawyer from Atlanta, Georgia is easily one of the best Chairs I have ever worked with. He has a very strong connection to MS on multiple fronts and a wonderful knack for summing up a situation eloquently and in his own very inclusive way. He highlighted that this is one meeting where you will see Israel and Palestine working together or USA and Russia collaborating, middle eastern countries talking and uniting with a common purpose. His words made very real on the morning of a homemade bomb being detonated in the London underground only a couple of miles of where our meetings took place and where tensions between countries in other parts of the world continue to escalate.
But in our rather cocooned part of West London, those tensions, threats and the danger is largely forgotten. In place, is a singular desire to collaborate globally in a respectful, friendly and congenial manner where shared values and a common goal to end MS no matter where you live seems to triumph over everything else.