This blog discusses cures for type-1 diabetes that are either in human trials or just about to start. As time permits, it also covers research that I think are important to parents of type-1diabetics (usually because it is making a big splash in the news), and also research topics that I consider interesting. Treatments for diabetes are not generally discussed here, unless they can turn into a cure.
The Definition of a Cure Used on This Blog
My definition of a cure is this:
- Blood sugar control without testing and with doctor's visits 4 times a year, or less. Any cure must result in an average lifespan close to normal.
- Does not require a lifetime of immunsuppressive drugs, so it is not trading one treatment for another. (but a couple of operations, or a short course of drugs is OK).
Because a cure for type-1 diabetes is likely to involve a combination of several different drugs or treatments, I try to follow research into anything which may be an important part of the cure.
Why I Started this Blog (and it's related web site).
I started this blog for a couple of different reasons:
The biggest reason, was that I got angry at reading (over and over again) that researcher X had cured type-1 diabetes in mice and therefore humans would be cured in 5 years. Understanding why this was not true -- even as it was repeated over and over again by different researchers -- and being able to articulate it to others was an early goal of mine.
A second reason, was that I was a member of an email based support group for the parents of children with type-1 diabetes. I learned a lot from this group, and benefited greatly from their collective insight. I wanted to give something back; to be helpful to the group in some way. I noticed that the same research subjects came up once or twice a year. So I felt that it would be helpful to spend extra time creating really good, well researched postings, that not only contain useful information and opinions but also the sources of that information and the rational for those opinions. My hope was those postings could be reused whenever the topics came up. That idea grew into my status web page, and later into this blog.
A third reason was Dr. Faustman's research. I realized early on, that in order to fully understand it, you had to understand it's history. Not just what is she doing and saying now, but what was she doing and saying 6 years ago; 3 years ago, and so on. That the changes over time contained critical information on how her research was progressing. And I realized that this was true of other lines of research as well.
Finally, I realized that for all research: details mattered. If you wrote one sentence about some research, it would likely be wrong; simply because one sentence could not possibly contain all the nuances and details required for the whole truth, nor could it acknowledge all the uncertainties that are always present in research. You had to write paragraphs to include all the details required for a fully truthful description of a line of research. And often, include footnotes with even more explanations and digressions.
Why I Continue This Blog
The reasons I continue to work on this blog and web site are a little different than why I started:
I do it, because I enjoy it.
Keeping track of research aimed at curing type-1 diabetes is my way of staying optimistic.
Why You Might Disagree with Me / How I View Research
Obviously, people disagree with my evaluations of research for all sorts of reasons, some good and some bad. But I've found that most of the larger disagreements boil down to this: I evaluate research based on what it has done, in people, in the past. Many people evaluate research based on how good the story the researcher can tell about the future. This often boils down to objective data (from the past) vs. emotional hope (for the future), and I come down on the side of data.
Another big difference between how I evaluate research and how some other people do, is that I evaluate the research and not the researchers. Others often give long descriptions of how committed a researcher is. How personal is their quest to find a cure. How they worked long hours and gave things up in order to cure this disease. What a good, smart, enlightened person they are. How they are nice to puppies and children. You won't find me filling space with that kind of fluff. I don't care if a researcher lives under a bridge, eats goats, and is a troll. If they've got data showing safety and efficiency of a cure, that is what I care about.
Some General Rules That I Keep In Mind as I Write this Blog
Here are a few general rules that govern how I evaluate research:
- Data is more important that talking, and much more important that excuses. (To put it bluntly: if you want a drug approved by the FDA, you must have data. It does not matter what excuses you provide to the FDA.)
- Results in people are much more important than results in animals.
- One clinical trial is good, more are better.
- Opinions are not important; but what is important is the reasoning behind them, the data and information they are built on, etc. In short: why a person has opinions is more important than the opinions themselves. And that includes my opinions. Especially my opinions.
- Details matter.
- Specific numbers, the exact data, is important.
- Actions speak louder than words.
Don't get emotional about research; it clouds your judgment.I also like the following quote from Confucius:
Listen often, speak only when sure, and mind always the tone.And here are a few more:
An infinity of excuses can always be found for non-action. -- Theodore Roosevelt
Am I a Shill for "Big Pharma"?
No. and yes. :-)
Usually when someone accuses me of being a shill for "big pharma" it is just that they don't like something I've posted, but can't find anything factually wrong with it or any problems with the underlying data. So they admit they have no substantive evidence, by making this vague accusation. If they saw a mistake in my facts or logic they surely would have pointed it out, but they don't, so they fall back to this form of name calling.
On the other hand, it is certainly true that I would never give my daughter an unapproved medicine. And approval requires scientific study. The FDA and the EMEA both require it.
If someone stumbles out of an exotic jungle and proudly announces that they are a Rhodes scholar and graduated from Harvard and love children and puppies and have been studying ancient rain forest wisdom for decades and now have this cure, which is 100% natural, and therefore safe. Well, I will ignore them until they start a clinical trial. So in a sense, I am a shill for scientific research: evidence based (or data based) decision making. Would you put something in your child if some Rhodes scholar assured you it was natural and safe? Not me; I need to see those studies.
I'm not a shill (for big pharma or anyone else) in the sense that I don't work for a company that does medical research (into type-1 or anything else). I don't get money from any such company. I don't get free products, free use of products, free travel, or free anything else, from anyone.