Why the Healthcare Bill Should Stand: A Personal Appeal

I realize that many are are against the new healthcare reforms, and believe that they should be repealed. I can only hope that this post can put a face on the need for the reforms, and may make you consider the issue from a different light.

My name is Meredith, and I am 20 years old. I have a disease called a Primary Immune Deficiency. My immune system does not produce antibodies correctly and parts are missing, and consequentially I get sick frequently and severely. I also suffer from Sjogren's Syndrome, Celiac Disease, and peripheral neuropathy in my hands, forearms, and feet. My greatest dream for as long as I can remember was to serve my country in order to honor my family's nearly 100 years of past military service, but my health issues disqualify me.

I started my plan of spending 8+ years in college last fall in order to become a Nuclear Engineer and hopefully work for the Navy someday. My insurance coverage from my parents will run out when I am 25. I will not be done with my schooling and the only option left to me if the healthcare reform is repealed will be to try and buy a policy from a private insurer. Due to my preexisting conditions, I would be considered in the "high-risk" category, and a policy would cost upwards of $16,000 a month. I doubt many of you could afford this plan, let alone a college student. To compound this, due to all of the health issues, I am currently unable to get a part-time job in addition to attending college.

Unless this healthcare reform stands, it could become a matter of life and death for me. My main medication, antibody replacement therapy for the Primary Immune Deficiency, costs over $100 a gram to make. I use 80 grams monthly, so that is $8,000 a month for that medication alone. Including all prescriptions, doctors appointments, medical testing, hospitalizations, ect., it costs over $250,000 to keep me alive for a year. Despite the cost, why do I deserve any less of a chance to live my life than anyone else?

I do not write this blog post lightly. I could be throwing away my future chances of working for the Navy, the only dream I have left, and the one thing that keeps me going. This healthcare reform is too important for me not to speak up and speak out. I realize to many people that I am merely a massive expenditure of money, something to be avoided like the plague.

I think if people take one thing away from this post, if one thing only.

I did not ask to be born with all of these health issues, and I do everything in my power to keep them under control.

I will never give up until the day I die. Until then, I will keep exercising 5+ times a week, even when sick, eating healthy, taking all of my medications, and being as proactive as I can about my health. I am also currently pursuing experimental treatment for my Primary Immune Deficiency, as all else has failed.

I refuse to simply lie down and die.

I want to live.

-Mer

For more information on Primary Immune Deficiencies:
http://www.primaryimmune.org/about_pi/about_pi.htm

The Ethics of Genetic Engineering

The advancement of science and medical technology always comes with an ethical discussion attached. In previous years it has been embryonic stem cell research and human cloning. As the field of genetic engineering makes significant strides, the discussion of ethical application of scientific knowledge will only get more difficult.

Genetic engineering is the practice of cutting and splicing genes and DNA from different sources. A gene for color blindness could be replaced with one for normal color vision, and a gene that causes cystic fibrosis can be replaced with a "good" gene. Scientists have already created everything from higher yielding plants to glow in the dark monkeys! However, the practice leads to some interesting questions. Should genetic engineering be used on humans? There may not be a right or wrong answer.

One worry is that if genetic engineering is used on humans, it may bring about the discrimination of said individuals. This is a valid point, because even 45 years after the Civil Rights act, we still deal with discrimination pertaining to race. Also, just as someone who is sick can be discriminated against by their employer, genetic engineering could lead to discrimination due to being too healthy! Another issue surrounding genetic engineering is the ability to use it for selective breeding purposes. Should parents be able to custom build a baby from the genetic traits they want? Picking gender is already allowed in some in vitro fertilization clinics. How about a baby with blue eyes, or perfect teeth? This is sounding a bit too close to Adolf Hitler's quest for a perfect race for my comfort. But, what if the parents want to avoid the baby inheriting a genetic defect for the disease they carry? For an individual with an inherited genetic disease, this could mean they could have children without fearing passing on the disease.

The issue of genetic engineering is a very personal one for me. I have a condition called a primary immune deficiency. A primary immune deficiency occurs when a person is born without their immune system or their immune system doesn't function properly. (See this article for more details.) These diseases are caused by genetic defect and most often leave people with an increased susceptibility of infections. In my case, not only does my body not produce enough of one type of antibody, but there is a hidden piece of the puzzle they can't seem to figure out that makes me not respond to the normal treatment very well. My immune deficiency has a very limiting effect on my life, and my best hope is if they can someday perfect adult gene therapy.

Although I do realize that the usage of genetic engineering doesn't come without serious questions, I believe that it will someday benefit us all. And who knows, maybe it will save your life.