Risa, Dr. Ricordi and me
The type 1 diabetes community is connected in ways that outsiders can’t easily fathom. It’s not just the advent of social networking and connectivity that unites us more easily today, but also how it helps us identify the connections that were there all along.
In 2001, I moved to Rome and met another wonderful journalist whose children attended the same school as my daughter. Fast forward to the year 2010, and my journalist friend from Rome virtually (online) introduces me to a woman named Risa Pulver who has Type 1 diabetes, just like me. Two years later, Risa Pulver and I discover that we are not only linked by mutual friends and diabetes, but have also shared the same endocrinologist. In fact, the doctor (Andrew Drexler) who managed to help me through the birth of my only child also helped Risa give birth to twins. This past weekend, we finally meet for lunch —after I travel more than 8,000 miles from Hong Kong—in Mid-town Manhattan. Risa has brought along someone for me to meet— Dr. Camillo Ricordi, Scientific Director and Chief Academic Officer of the Diabetes Research Institute and one of the world’s leading scientists in diabetes cure-focused research and cell transplantation, who has serendipitously scheduled a meeting (for the very next day) with friend and founder of the Islet Sheet Project, Scott King. Talk about six-degrees-of-separation.
What’s even more remarkable is that Dr. Ricordi is founder of an organization that takes a bold stand on the problem behind curing chronic illnesses in the 21st Century. His position (and that of its members) believes that it’s not for lack of scientific talent that we’re not curing chronic diseases today. It’s much more complex, and for many of us who live with or love someone who suffers from a chronic condition like diabetes, nearly impossible to accept.
It’s as if patients with serious chronic conditions are given the means to survive with a great deal of risk and sacrifice in order for BIG business to carry on making devices and medicines. Now there’s a Catch-22.
The Cure Alliance
The Cure Alliance (The Cure Focus Research Alliance, Inc) is an international association of approximately 100 distinguished scientists, physicians, surgeons, and other professionals whose primary objective is to develop effective strategies for the cure and “eventual eradication” of disease conditions, such as Type 1 diabetes. In order to promote this goal, the Alliance strives to eliminate economic barriers that stand in the way of collaborative and scientific research.
Economic Barriers
Dr. Ricordi doesn’t believe in a “conspiracy theory” a topic that is so often discussed online. There is no master plan of evil corporate executives who want chronically ill patients to suffer by their condition forever by eating pill after pill (or injection after injection) with no cure in sight.
Unfortunately, struggling economies like the current US need big business. Big Pharma typically guarantees investors a 15% return on investment. Quite remarkably billions of dollars are invested in US (health related) Research Development factions each year for the sole tactic of developing “new proprietary molecular [technologies] that are comparable or slightly better compared to other existing remedies to prolonging life in the presence of chronic disease conditions.” Funding a cure is economically undesirable, not because corporations and governments want people to suffer, but because it is unaffordable. Right now, federal funding backed by corporate interest (and even academic institutions) need low risk, high yield clinical trials, with the endpoint of a product that offers modest to comparable gains in efficacy. These products can sustain a corporation’s profitability for years and add a percentage point or two on the national jobs index. Ouch.
Other barriers intertwined within the web above are regulatory (the FDA is no longer about improving medical innovation or outcomes. Gottlieb, WSJ, 2011) , as well as institutional (criteria and guidelines for academic funding have more to do with professional tenure and improving the infrastructure of the institution then anything about saving lives in scientific labs.)
A catalyst for change?
What the Cure Alliance is Doing NOW
The Cure Alliance participates and assists in the selection and coordination of the most appropriate, timely and cost-effective strategies for cure-focused research, to bring the novel therapeutic or preventive strategies to the patients who could benefit from them most.
Examples of recent worldwide work, proving their collaborative nature, include published research by the hundreds if not thousands:
Yesterday in the Journal of the American Medical Association
Induction Therapy With Autologous Mesenchymal Stem Cells in Living-Related Kidney Transplants
and earlier this year,
and here in 2011
Donor Islet Endothelial Cells in Pancreatic Islet Revascularization
or here
The anterior chamber of the eye as a clinical transplantation site for the treatment of diabetes and the list goes on and on.
Finally, if you need further convincing OR if this is the first time you have read about Dr. Ricordi, the DRI or The Cure Alliance watch the 2009 video which gives an account of how Dr.Ricordi saved the life of a US soldier sent to Afghanistan and wounded by a bullet which pierced his pancreas. The pancreas was sent to Dr. Ricordi who extracted and purified the islet cells found in the damaged pancreas. The islets were then sent back to Walter Reed Hospital that same night and Dr. Ricordi advised the on-site surgeon remotely on how to implant the islets into the soldier’s liver. * (See here for NEJM publication, Autologous Pancreatic Islet Transplantation for Severe Trauma)
Now that’s what I call collaboration.
Please join The Cure Alliance and the DRI. It’s important that patients become active in the effort to change the status quo of scientific research today.
*The soldier remained insulin free and while he did not survive – sadly the cause of his death remains unclear.
