We R the Cure

Seeking Cures and Cheating Destiny

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Show Me The Money: Diabetes Research Funds Continue To Fall Well Short Of A Cure

Ever since I started my blog, I wanted to “republish” this small section of James Hirsch’s fair and honest book, “Cheating Destiny: Living with Diabetes.”

Hirsch writes about the many researchers, scientists, doctors and advocates who are still working on “conquering” but maybe not “curing” diabetes. Of course, money is one issue. Ronald Kahn of the Joslin Diabetes Center in Boston has tried to calculate the government’s neglect of diabetes research funding. More than 20 million Americans have diabetes, Type 1 and 2, which translates to about 7 to 8 percent of the total U.S. population.

Dr. Denise Faustman

Dr. Denise Faustman, a veteran diabetes researcher, made Wall Street Journal Headlines in 2006 in a story titled: “Confirming Hope on Diabetes: A Controversial Therapy for Diabetes Is Verified.” Her story is included in Hirsch’s book.

Consider these stats about our country’s lack of public support for a growing diabetic epidemic.

  • Public spending on diabetes is about $50 per diabetic, based on 2007 financial data.
  • The average cost of care per diabetic — what you spend on medicine, equipment, etc — is between $10,000 and $20,000.
  • 32 percent of the nation’s Medicare budget is spent on people with diabetes.
  • Since 1980, the NIH budget for diabetes has increased by 240 percent to $1.1 billion.
  • NIH total expenditures have grown by 261 percent, thus the percentage allocated for diabetes has declined as the number of diabetics has doubled.
  • In 2004, the NIH spent about $68 for each diabetic compared to $16,936 for each patient with West Nile virus.

“Our investment in the future, the future of all these people, amounts to less than half of one percent of what we’re spending on the disease,” Kahn told Hirsch, adding that even the tire industry spends at least 3 percent of its sales on research. “It’s simply not enough. I can’t say that if we invested ten times as much we’d move ten times faster, but we would move faster.”

So why would the West Nile Virus receive more funds than Diabetes, you may ask? Hirsch contends that the perception of insulin as a kind of cure — or at least a potent remedy — has made other diseases seem to be a larger threat. Infectious diseases, in general, receive priority for government funding. That makes sense to me because government’s job is to protect us against epidemics, but it does not address the obvious lack of public funding for Type 1 diabetes, an auto immune disease that also strikes suddenly,  without warning and is largely unpreventable. I could not “guard” against the Type 1 diabetes bug bite, although researchers believe that genetic and environmental factors do contribute to a person’s chances.

In today’s recessionary economic climate, I understand that taxpayers can not support every worthwhile disorder or disease. A few years ago, well about 40 years to be exact, President Richard Nixon declared a “war” on cancer and urged Americans to spend money to defeat it. Although some cancers are beatable today, I don’t think anyone would say we’ve won that war? And 40 years ago a group of angry and fired up parents formed JDRF, to raise money for better research and finding a cure for their children suffering with Type 1 diabetes.

Today, hoping for a cure is still a good thing. May is my anniversary month — I’m living 14 years with this uninvited house guest. I still believe things will get better in the near future for me and the 3 million Americans living with Type 1. However, hoping for a cure may also be unhealthy for the person living with diabetes.

As Hirsch, also a Type 1 diabetic and father of a child with the disease, correctly concludes: “If I believed (a cure) was ‘around the corner’ or five years away or even possible, it would have been easy to lapse into bad habits. Why go through the daily demands, frustrations and indignities of tight glucose management when a medical miracle would soon deliver me from my burdens? Diabetes is too taxing, too unforgiving, to hold out hope. It’s the ultimate paradox of the disease: if you have it, you have to live your life as if you’ll never be cured.”


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Hematocrit-ically Incorrect: My Quest Continues For The Diabetes Holy Grail — The Closed Loop AP

My quest for the Holy Grail — wearing the closed-loop, artificial pancreas technology  at UVA — hit a small speed bump on the road this week. My search results: U.S. Food and Drug Administration’s health guidelines 1, Mike Anderson clinical trial participant 0.

Artificial Pancreas Inside SmartPhone Prototype

When it is ready, the AP Algorithm will run on any SmartPhone and fit in your pocket.

Last Monday, I made a new pilgrimage on I-64 West to Charlottesville to take my health screen, step 1 of my hoped-for-admittance into a Mother’s Day weekend outpatient trial at the UVA Center for Diabetes Technology. If I passed the screen I would be rewarded with 2 overnight stays in an economy hotel adjacent to the university and the opportunity to actually “Wear” a working prototype of the closed loop artificial pancreas technology!

At the heart of the system is a novel hand-held device developed by a UVA research team, led by Patrick Keith-Hynes, PhD, and Boris Kovatchev, PhD. The device uses a “smart” algorithm that automatically delivers insulin and regulates a person’s blood sugar levels — taking much of the burden of constant monitoring off the patient. Inside the normal looking droid phone would be the “brain,” that would be smart enough to take over my glucose management for 24 hours and achieve nearly perfect control without my assistance. In this hospital test, a “straight line” means life NOT death for Type 1 diabetics. To say I was excited to see the APP in action, would be the understatement of the year.

To make a long story fit into a blogger’s attention span, however, I did not pass the FDA-required screen because my Hematocrit came back with a score of 39.5.  The FDA minimum threshold for acceptance — 40.0.

Yes, I missed it by “that” much. So, I wondered, am I sick if I couldn’t score a 40? And why is my Hematocrit costing me a date with the APP? Hematocrit is a blood test that measures the percentage of the volume of whole blood that is made up of red blood cells. This measurement depends on the number of red blood cells and the size of red blood cells.  Normal results vary, but in general are as follows:

  • Male: 40.7 – 50.3%
  • Female: 36.1 – 44.3%

Normal value ranges vary slightly among different laboratories, and you should always consult with your doctor on lab results before making changes to diet.

When Daniel Cherñavvsky, MD,  called me with my UVA lab results I could not believe it. However, this was not a score that could be “managed” or “finessed” or worked around, Dr. Danny said. The FDA requirements are in place for the health and safety of clinical trial participants like me. The “irony is,” I’ve passed this same Hematocrit screen twice before and participated safely in two clinical trials where blood was drawn continuously for 12 hours! The new outpatient AP trial is only taking blood via finger sticks, so, I’m confident I’m “Iron Man” enough for this new study.

The good news about the bad new is that the May trial is the “proof of concept,” the first of what should be many more outpatient clinical trials in the coming months at UVA and four other universities in the USA and Europe.

So, I’ve got some work to do in the coming months if I wish to qualify.

  • Eat more red meat. Eat more leafy green vegetables.
  • Check with my Endo and start taking a low-dose, slow release iron supplement once a day.
  • Exercise as much as possible, drinks lots of water and get more rest.

I wonder if that’s how all great explorers prepared for their quest? So check back here very soon for a real-time,  live blog report of the closed-loop AP in action. The future is coming thanks to the awesome team at UVa. Together, We R the Cure.

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HealthLine.Com Ranks Top 17 Best Blogs: Passionate Type 1’s Educate And Chronicle Their Struggles, Successes

Diabetes is a condition that affects millions of people around the world. Several eloquent and compassionate people who face diabetes have chosen to write about their experiences in blog form, chronicling both their struggles and their successes. In addition to being compelling reading, these bloggers’ stories bring together the online community of those whose lives are affected by diabetes.

After poring over many, many diabetes blogs, looking for the best of the bunch, we have collected seventeen of the best diabetes blogs for you to read. We trust that you will find these bloggers’ writings and experiences to be sources of both helpful information and hope. The Diabetes Online Community #DOC is a great source of support for me. Together, We R the Cure!

Published March 29, 2012
Written by Leah Snyder

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Is Type 1 Cure Research Funding Focused Enough? A New Report Worth Reading

Until yesterday, I had never heard of the JDCA, the Juvenile Diabetes Cure Alliance, in my 14 years of living with Type 1D and volunteering in my local diabetes community.

Diabetes Advocates Push Congress For Federal Research Funds

Chris Schutt, his son, Ned, American Idol Singer Elliott Yamin and I advocate for sustained federal research funds with U.S. Rep. Eric Cantor, R-VA, in 2009.

Now I have. This month, the JDCA has introduced its latest report , “Is Type 1 Cure Research Funding Focused Enough?”

The report takes a look at a very important issue relating to cure research. Are the organizations being too broad when it comes to outlining plans for a type 1 diabetes cure and when funding projects? Based on JDCA’s research and the fact that there is no cure on the horizon, the non-profit’s analysis suggests that this is the case. The JDCA report says, “Without clearly defined goals, the non-profits are funding a wide array of research projects. As a result, a lot of money goes into efforts that are not working to deliver a Practical Cure for type 1 diabetes.  This diverts resources from those projects that are working towards a specified cure goal that could help people now living with the disease.”

If you’re living with this chronic disease, you wanted a cure YESTERDAY. It’s been over 40 years since a group of parents founded the JDRF at their kitchen table and yet We R still seeking a Cure.

In order to improve the quality of life for Type 1Ds, it’s important to listen and gather as much relevant information as possible. We must keep asking the researchers, organizations and manufacturers “When?” When we will see real progress. We must push them to be smarter and more targeted with a limited amount of dollars because We R the Cure. We R doing this for ourselves and the generations to come.

The JDCA is a self-funded non-profit that aims to educate donors and prompt transparency in the charitable organizations that raise money to support research.  JDCA says it is an independent analyst of the type 1 diabetes charitable universe and brings a business-like perspective to focus research toward a Practical Cure.  Their mission is to direct donor contributions to the charitable organizations that are most effective at allocating funds to research opportunities that maximize chances of curing type 1 diabetes by 2025.