Treatment and trials

When M was first diagnosed with Type 1, Bill and I made a decision almost immediately about research, and our daughter's potential role as a guinea pig for finding a cure for diabetes. We would do anything we could to help support the research regarding the causes of diabetes,  but we did not want to engage in any experimental treatments for it. We decided that if she wanted to engage in experimental treatments as an adult, we would support her, but she wouldn't be doing it on our watch.

We dutifully enrolled in a program called TrialNet, which tracks immediate family members, and some secondary members, for a few years, and helps the researcher identify markers that might make one more prone to Type 1. We had our blood tested, let them gather their information, but, as they tested siblings up to 18 years of age, and parents of up to 42 years, we quickly aged out of the program.

But I did receive a nice tote bag.

As far as other information gathering programs, it wasn't until this year that we enrolled in T1D Exchange, which collects data from families as well. Did you know that psoriasis is possibly connected with Type 1? Now you know.

Now, being a D family, we are always on high alert for any information about Type 1 in the mainstream media. You know the media everyone else reads. Not the JDRF website, nor Children with Diabetes message boards, nor JAMA, nor the Joslin Newsletter.

Recently, Bill, M, and I discovered such an article in the Los Angeles Times about a new treatment for diabetes. The summary is as such: A doctor from Massachusetts General Hospital has been working on identifying a vaccine to prevent diabetes. While working with the vaccine, and while testing it on humans, she discovers that the vaccine can actually regenerate the precious beta cells that make the pancreas work; even in people who have had diabetes for a long time.

And Bill and I think: "Wow! Wouldn't it be cool if this pans out?"

And M says, "I want to get in that study!"

Imagine the sound often used in party scenes at the movies. The teen heroine is trying to share something with her boyfriend, but it's too noisy for him to hear, so she ends up yelling, "I think I'm pregnant!" really loudly. With the screech of a record being scratched by a needle as it suddenly stops, it becomes silent, and the whole party looks at the distraught couple.

That record-scratching screech is what I hear in my head.

The thing is, we, as M's family, want to see a cure in her lifetime.

For M, tomorrow wouldn't be soon enough.

I sometimes forget that this is how she feels. I feel my heart sink. I feel a stone in my stomach. Bill and I look at each other, and a silent agreement passes between us.

"We'll talk to your DNE about getting into the study. We want to make sure it's safe."

In the meantime, I check it out. The vaccine sounds safe. It has been used for the prevention of other diseases, and the only side effects reported are a soreness at the injection site. Am I sure I want her to be involved in this study? No, but I want to talk to someone else about it.

When we bring up the study to the DNE, she tries to sound impartial, but she involuntarily makes a face.

She says, "You just want to be very careful when deciding to enter this study. The doctor running this study is very controversial. People are very suspicious. It sounds like a dream come true: it cures diabetes and there are no side effects. But you want to make sure that you research the study thoroughly before deciding you want to be a part of it. You don't want to risk your health unnecessarily."

She then tells us about a "closed loop" study that is coming up in the fall. M agrees that she would like to be a part of this study, and asks the DNE to make note of the fact that she would like to participate.

While this sounds great, I can't help feeling disappointed.

Our DNE is pretty conservative. We have asked her about eliminating insulin injections through diet, and she shut us down, saying she had never heard of such a thing. Unless she hides under a rock, I know that it's not true. If I have heard of it, she, a professional in the field, has certainly heard of it.

I figured that she didn't want to dedicate our precious office time to something that she thought would not be a viable option for M.

I suppose that she also feels similarly about the diabetes vaccine.

So I am back where I started.

I will do some research. I will read some more. I will check into the study. And I will keep praying.

Hmmm. Looks like the jury is still out.