The Importance of Health Insurance and Privacy
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My husband is a very good-looking guy with a full head of silver hair. If you meet Eric, you would think he looks like a perfectly healthy, almost 50-year-old. But looks are deceiving.
Several years ago, at age 39, Eric was diagnosed with a blood clotting disorder caused by a gene -- Factor V Leiden. He also had a small blood clot in his brain. He was very lucky that this mini stroke didn't cause a lot of damage. It just cut his peripheral vision a bit. He was put on blood thinners and has not had any more strokes.
At the time, my kids were 11 and 8. Each of them had a 50-50 chance of inheriting the gene from their dad, making them more likely to develop blood clots.
Our pediatrician called the nearest children's hospital and talked to a geneticist. After a long discussion, the expert told our pediatrician not to run the genetic test on my kids. He said it actually would be unethical in that circumstance.
He gave us three reasons: first, the kids should be allowed to decide after they turn 18 whether they even want to know about a genetic weakness. Second, the disease doesn't require immediate treatment.
But the third and most important reason was that they could have trouble getting health insurance when they are adults if the genetic test is in their chart. I was appalled.
But that was just the beginning. Years later, my daughter Katie almost died of a blood clot. She was 16. She was taking birth control pills to regulate her uneven periods. The pill can increase a woman's chances of developing blood clots. It turns out that she did inherit the clotting gene, but we didn't know it.
After being on a new birth control pill for only six weeks, Katie was at death's door. The short version of the story is that she went to a concert and stood for hours. She also got dehydrated because drinks were so expensive. She developed a clot in her leg and part of it broke off and went to her lungs. She had severe chest pain and her leg was swollen and blue. The next thing we knew, she was in a helicopter. She spent two weeks in the hospital while a team of clotting specialists tried to get the clot to stop growing. By the time it stabilized, it filled her vein from her knee to her belly button. Have you seen that ad on television about a coach who is knocked out by a clot smaller than the tip of a pencil? Katie's clot was like two feet of thick rope.
Katie is doing much better now. It has been six months and she just got off of the blood thinners. Her leg still gets tired and she has to wear a surgical stocking 24 hours per day to prevent swelling which could damage the leg. Thanks to tutors and projects, she is set to graduate from high school on time this spring.
The moral to this story:
- Insurance needs to be available to everybody - even those people with genetic problems. A parent should not have to weigh the threat of losing health insurance coverage against gathering vital medical information! I later learned that the State of Maryland does offer insurance to folks with medical problems, but my daughter won't be able to buy insurance if she moves. And any future employer has the right to see her medical file, so they might not hire her.
Clotting problems aren't rare either - about 5% of Caucasians alone have NO BUSINESS being on the pill. In our travels to Katie's many doctors and therapists, we have met three nurses who almost died last spring from blood clots caused by the pill. Like, Katie, none of them smoke and all are slender.
Whenever an ad for the pill comes on TV, Katie watches her friends' reactions. Some of them get excited about the idea of fewer periods, clearer skin or less moodiness. Katie's reaction is to yell at them, "Are you for real? What do you not understand about me almost dying after six weeks on the pill?"
Beth Pulsifer-Anderson is the author of The Reflux Book and the founder and Executive Director of the Pediatric Adolescent Gastroesophageal Reflux Association - www.reflux.org. She is the author of two medical journals and a contributing author on another.