3D Prosthetic Arm Printing for Victims of War

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1 3D Prosthetic Arm Printing for Victims of War One man s answer to the cruelty of war is to restore lost limbs through 3D prosthetic arm printing. No blame, no drama, Mick Ebeling simply said I saw Daniel a 14 year old boy with no arms and I had to help. It doesn t look like he waited years for an elusive team or medical volunteers. He made his team with those he helped! The Power of Medical Action and Innovation He went to Sudan with the equipment and skills he had to make a difference. When he got there he didn t waste his time by considering the locals too uneducated to understand making a 3D prosthetic arm. They watched him, learned and he guided them until they could make a 3D Prosthetic arm and leave the legacy of independence for those who lost arms in the war. Once a week an amputee gets a 3D prosthetic arm made inside the village, Now that s Health Science!

2 Not Impossible! This video was found through The Bill and Melinda Gates Foundation on LinkedIn and posted courtesy of Gavin Kirk who shares Just before Thanksgiving 2013, Not Impossible s Mick Ebeling returned home from Sudan s Nuba Mountains where he set up what is probably the world s first 3D-printing prosthetic lab and training facility. More to the point of the journey is that Mick managed to give hope and independence back to a kid who, at age 14, had both his arms blown off Crowd sourcing Plea for Action as Rare Cancer Won t Wait In the USA a child struggles to win against a rare cancer. She and her family beg pharmaceutical companies for access to life and the FDA to expand compassionate use. It shouldn t have to be that way but every day I meet last chance patients who share how they have been excluded from research because they are too sick and they feel science has failed them. They seek refuge in offshore clinics that promise life if they are rich enough but if not they just die and some do anyway or spend all their money in hope of a cure at the hands of slick marketers or testimonials on UTube. If 3D prosthetic arms can get to rural Sudan could a life sustaining drug get to a teen in America? Can We Move Beyond The Research Bottleneck? Interventions move through the slow wheels of getting to market. ThinkWell wants to see this change. How could we speed the process of research validation for safety and efficacy and decrease the costs to make the differences that matter? Is time not an ethical component? What ideas do you

3 have to share without condemnation or blame just ideas that could work? Join the kind of arms race that really matters! Can Patients Get Research They Deserve? Some Studies That I like to Quote -Can Patients Get the Research They Deserve? Good decisions in patient research require listening with a mind to hear. Problem solve without blaming, Give research a chance! Let this video about research application get you thinking about the problem with strictly following guidelines and shooting for targets and NOT using evidence to help you and your patient make decisions. The lab coat logos are from top drug companies, top Rx medications and top guideline producers. Guidelines are useful but without evidence and common sense mixed with the values of the patients they are not enough. Patient, doctor or researcher when you make choices make sure you know what the evidence is, what is the quality of this evidence and what the choices are. Good decisions for patient research require listening with a mind to hear.

4 I was involved in some painful discussions about research and patients this week. Patients were crying out against rules and the FDA because they have a very real fear they will die when interventions the patients believe will work are going through the research cycle too slowly or not at all. The don t think FDA research gives patients a chance. It is a challenge to explain how safety and efficacy need to go together for effective research. They had trouble with understanding the need for control for more than placebo s in research trials and they did not understand that bias is not just a four letter word. They think a trial of one should be enough because they are convinced that because they cant get into a randomized controlled trial the randomized controlled trials are of very limited use. They advocate doing away with widespread phase 3 research because it is only their n of 1 that matters. The patients are willing to throw aside their rights as a research participant, take all risk for harm, and pay for the treatment with no guarantees. ThinkWell wants to put the public and patients at the heart of research. Even after training in evidence based medicine the sheer task of explaining it all seemed daunting until it came to me that ingredients were missing,open and trusting communication, the willingness to solve problems without blaming and the desire to see beyond a personal immediate relief to commit to a long term solution that would benefit all. Telling and teaching is not enough. Tell me and I forget, teach me and I may remember, involve me and I learn. Benjamin Franklin Reality came in an people were recognized as leaders in a field of research expertise and people that could really have belonged on that list did not even get a mention. Those that were not mentioned congratulated the others without a trace of bitterness just rejoicing that other friends made the list. Some of those that were not mentioned were patients too.

5 One of the unmentioned was Roman Reed who has a spinal cord injury. I first met Roman through an where he encouraged me. Roman was a different kind of patient, we never heard what the injury took from him instead we would be cheered on to see what research could do for others. Later I was to learn the names of senators all over the USA because Roman insisted we write them to give research a chance. When they voted no, he and his dad would try another way and we would be admonished to give the senators another opportunity to make the best choice. He and his father raised over 100 million dollars for research. Here is the scoop On a fully leveraged expenditure basis,roman Reed s foundation accounts for $101 million of R&D funding (only $22 million short of the $123 million expended by NIH on hesc research during the 2011 federal fiscal year). The lesson: How can patients get the research they deserve? Give evidence a chance, stay open, communicate, get involved, be respectful, kind and listen so you can learn and believe that the public and patients belong at the heart of research.