Black Bag Operations Network

You can be completely healthy and still denied health or life insurance based on your DNA! As scientists identify genetic causes of diseases, insurance companies are using that information to deny coverage to Americans. Grandpa had Alzheimer’s? You might carry the gene – and be turned down for coverage! GINA has hit the House. Show your support!


I have just been turned down for coverage at Regence Blue Shield because of genetic testing that showed I have hereditary hemochromatosis. The diagnosis was early, no damage has occurred, maintenance regime of monthly phlebotomies will keep my iron levels normal, and they still won’t write me a policy.


Thanks for writing to your US Representative and asking him to support GINA.

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Tara Hunt today mentions she has been putting off dealing with some “minor” health related issues. She says “no more” and I applaud her (much as I applauded her at Seattle MindCamp – she rocks). Its the little things that add up to kill you.

In related news, I went in for my weekly treatment for hemochromatosis and got the results of the first six weeks of therapy – my FE load is down nearly 25%! HC is a classic example of a little thing that, left untreated, will kill you pretty soon. It just doesn’t pay to put this stuff off.

I’m kind of excited that what looked like an 8 month treatment program is now looking like 4. I’m also getting used to the phlebotomies. I’ve worked out my fluid regimen and I can “fill the bag” in about 15 minutes and be out in less than an hour.

Very cool.

I’m learning to hate Fridays. This is the day I drop a pint of blood in an effort to reduce my iron stores. About 4 hours later I just want to crash. Today, I’m going to actually try to go into work afterwards and see how I do.

I think I’m starting to get used to it. Which is good, since I’m angling for a new role at work and it will probably take a lot of energy. More on that if it materializes.

Update: I actually made it in to work so I guess I am getting used to it. I left a little early but I don’t feel quite as wiped out as I had in times previous.

Bad idea to ask that question, I might not like the answer.

Superbowl weekend I developed severe vertigo and nausea and ended up pulling off the road on the way to the hospital and dialing 911 because I couldn’t drive anymore. The doc in the ER pronounced it most likely a virus and gave me valium. Large valiums. I slept for a week solid before I started cutting the doses and made it into a regular Dr. While the vertigo did last “about as long as a cold”, the blood work showed abnormally high iron content.

A subsequent genetic test confirmed that I have double gene Hemochromatosis, a disease affecting about 1 in 100 Americans. It is tremendously under diagnosed and the genetic tests to detect it are fairly new. It also might explain why men in my family haven’t generally lived long (both grandfathers died at 54).

The care is straight forward – weekly blood donations until iron levels drop to normal. This is expected to take several months and is definitely leaving me in a low energy state. After that, either meds or less frequent blood donations are required for the rest of my life to prevent iron buildup and organ damage.

The good news is we caught it early. The bad news is the treatments leave me tired about 4 days out of 7 every week.