During the course of the Roche Summit, I felt very lucky. Lucky to be part of a group that’s invited to hang out in a cool city, in a fancy hotel, and to have a company willing to put up the cash for this event. I thought about how lucky I was to live in a country where, despite our complaints about health care systems and insurance premiums, we still have access to insulin, and to resources that can help us gain access to insulin in dire circumstances.
Actually, I felt freaking spoiled.
I do earn my income as a writer, and I do write often for diabetes-related publications, but it’s not a job. I attend diabetes-related conferences and I speak at many health events, but it’s not a job. Diabetes is not a job. Diabetes is a disease. Not an industry. As someone who lives with this disease every single solitary day, and who has no memory of life without it, I cannot it a “business.” While Pharma and device companies might want to call us “consumers” or their “client base,” we’re people. People first. And last. And all the bits in between. And we all have the very high honor of being part of a community of passionate people who truly understand. People who get it and know that diabetes is every day, every moment, and affects every one of us. Which is why I know that, if any group can literally change the world, it can be us, the collective diabetes community, both online and off.
During the course of the Roche Summit, Isabella Platon from the International Diabetes Federation spoke with the group of us. I read Scott’s post on this, and I have to agree – as a group, we could have been far more receptive. Our complaints were valid (get to know us and our community, read out blogs, reach out in a more personalized manner, etc), but these complaints would have been more appropriate if directed at a company. Not an advocacy organization. Not an organization aiming to provide insulin for people who, even 90 years after its discovery, still can’t get their hands on a vial or a clean syringe. I don’t care if the people at the IDF know my name or have ever heard of my blog. Their job isn’t to coddle me. Their job – goal – is to change the world for people living with diabetes on a global level.
Jean Claude Mbanya, President of the IDF, met with our group informally during dinner, and he spoke about how diabetes affects people. PEOPLE. People who are born in the United States and have access to decent care, but also the people who, by chance or circumstance, do not share this same opportunity. People.
Diabetes affects people.
I support the vision and the mission of the IDF. I want to do what I can to help people with diabetes survive, despite circumstance. And I think our global community of PWD deserve as much help as we can get.
I believe that there are more opportunities to mobilize our community and make a tangible difference. One thing we can do, today, is to help raise the awareness of the state of diabetes to the Obama White House. The IDF website said it best: “We need to convince President Barack Obama to show up and represent us at the UN Summit on September 19 – 20.” And we can do that, in part, by inundating him with postcards with our request. Visit the O is for OUTRAGE section of the IDF website to quickly and easily send your message on to President Obama.
Having the power to change the world means nothing if we don’t harness it. We need to raise our voices, together.