Thursday, April 19, 2012

Reaching the Unreachable

A theme discussed for the past couple years in the Diabetes Online Community has been how to take the "online" aspect of this offline, into our real life communities where we can reach those who aren't connected.

But even more than that, it's about reaching those who aren't connected by things many of us take for granted: Internet access, health insurance, organizational and individual support, or medicine and health care accessibility that many of us take for granted. Many efforts have been happening on that front over time, yet it continues to be an area we must continue working on because so many people out there need to find what they don't have.

We must do better, individually and collectively.

At the recent Medtronic Diabetes Advocates Forum, this was a topic that came up a handful of times. One conversation focused on how the Diabetes Online Community, can reach out and connect with those people who don't have access to these support resources. Ideas: get into nursing homes, doctors offices, church communities where so many patients aren't getting training or support and where we can help them find those fellow PWDs. In large part, many endos and CDEs - and even patients themselves - don't realize there's a need because they've never been told or thought much about the health impact these interactions and relationships can have.

Just knowing someone "like them" and being able to share their own stories, experiences, successes and failures and frustrations.

That aspect of going offline to bring more online or just reach them in general is an important topic, one that makes me smile because many of people in our community are already working hard on improving this and making sure it happens more often.

Then, there's the global aspect of reaching the unreachable, beyond even our own borders in the U.S. and more developed countries. In those places, people don't don't have access to these life-sustaining supplies and medicines, or D-Camps or medical professionals who can help them live happy, successful lives with diabetes.

Dr. Kaufman speaks as D-Advocate Cherise Shockley listens intently.
Dr. Francine Kaufman was one of the speakers at the conference recently. She's Medtronic's chief medical officer and a renowned diabetes researcher and doctor who's taken an inspiring leadership role in global diabetes advocacy. She talked about starting camps in places like Ecuador where kids are getting their first diabetes educations. Going to South Africa where orphanages are the only places care is available and that's where these kids are sent. In India, where girls aren't even considered worth saving so they end up dying once they're diagnosed with diabetes.

Then, Dr. Kaufman talked about her own experiences in Haiti, where there's an astonishing 85% mortality rate in the first year of type 1 diagnosis. After the 2010 earthquake, a million people are still homeless and the situation remains difficult, dire and heartbreaking. She reminded us about a story I recall seeing on the news after the earthquake and have heard a little about since then, but had mostly forgotten about and hadn't really made a D-connection to until Dr. Kaufman made it for me.

She mentioned how Academy Award winning actor Sean Penn bought a nine hole golf course in Port-au-Prince and turned it into a camp, where about 50,000 homeless people are living on it in makeshift tents and makeshift housing structures that she described as made out of plywood and looking like floorless doghouses. He created a charitable organization known as the J/P Haitian Relief Organization, which manages the camp and helps with food, sanitation and health care. He's receiving the 2012 Peace Summit Award this month during the Nobel Peace Prize laureates' annual meeting as a result of his continuing work there.

Dr. Kaufman talked about going from clinic to clinic and working to develop standards of care for people living with diabetes. In her first year there, they didn't have any meters in the hospitals at all. Only urine strips were used, even for those who are in comas. Now there are some meters provided, but strips are too tough to get so there's limited use and access. Same with medical equipment - she said you can open up a closet and all kinds of equipment falls out, unused because they're missing batteries and supplies have run out. She taught a medical school, where the students basically know very little to nothing about diabetes and they have no textbooks - only what there shown on slides and taught by the instructors like Dr. Kaufman.

This same lack of education and care exists not only in Haiti, but in Indonesia and other places in Africa and Asia. They're teaching them these care aspects.

But then Dr. Kaufman shared a story about a mom she met in Haiti, who was thankful for the D-Care education and support but said she must return home and simply can't afford to practically bring any of that knowledge to her daughter with diabetes because she doesn't have a job. There's an 80% unemployment rate there, and that prevents many parents provide the needed D-care their kids need to be healthy or even survive.

A concept underway involves an idea about how WE can help. The moms do incredible craft work with  beads there, and they might be able to make crafty beaded bags of diabetes "stuff" that could then be sold to us (in the U.S. or first world countries) as a revenue-maker for them to provide diabetes care for their kids. Details on that are still in the works, but those of us who attended the conference will be watching for updates to let everyone know.

This all just blows my mind, and really provides perspective for those of us who so often find ourselves griping about our latest A1c, insurance company or Flex Account frustrations and higher prescription prices. At least we have access and can basically afford these things. I know that friend and fellow D-blogger Sara Nicastro has an incredibly inspiring passion for helping those with diabetes in Haiti where she's traveled and third world places, but this is an area so often I find myself not focusing enough attention on. I want that to be different.

One key program doing wonders to help in these situations abroad - including Haiti - is the Life for a Child program through the International Diabetes Federation (the org responsible for World Diabetes Day on Nov. 14). The importance of this program and what's being done throughout the world can't be emphasized enough, and I hope that those individuals with the means can find the ability to help out in some way.

This whole notion of reaching the unreachable has global implications, from our own backyards to far away places we may only have heard about on the news. We are all connected, and it personally does my heart well knowing we have people like Dr. Kaufman doing what she can to help make a difference.

Taking advocacy that might be in a university lab or company corporate office, or even in online blogs or Twitter chats, to those offline who need it most.


Shannon said...

Great post - as usual, Mike. I feel like I am at a crossroads, trying to figure out what I want to do with my life. I would love to help other T1's - that's my passion. But I don't know how to go about doing it? I am always envious when I read about others from the DOC going around speaking and going to events ... (selfish, I know :/ ) because I don't know yet how to get connected like that. I love when people I know come to me for advice, or refer someone to me who's just been dx - just so they can talk to someone "like them". I feel like I'm a kid trying to decide what I wanna be when I'm grown up. But I'm in my late 30s so I'm not a kid anymore. ;)

Sara said...

Great post Mike!!

There is so much important work to be done all around the world related to diabetes care. It is a little overwhelming even thinking about where to start!

shannon said...

fantastic post mike, so much to think about, thanks.

Melissa said...

Mike - this post really puts things into perspective. I get upset with providers when I have to fight for more than 4 test strips a day but there are so many more people that can't get any! I think there is a lot of energy in the community to do more to help people get what they need but its not very clear where to direct it to. Thanks for posting.

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