President Obama is getting busy with health care reform. For those who know me, you might think I have some vague illnesses. I often just don't talk about it, so maybe you don't know my story. I think most people would not really understand what challenges people have with chronic illness.... yet I do not want to be the face of illness, but the face of potential wellness.Health care reform is very important to me and my family. Since I am on the distribution list of our President as a long time supporter (pre-election), I thought I would answer their request for sharing my personal story. This is what will be shared on their website, along with all the thousands (millions) of other people.
I was ill my entire life growing up. My mother was widowed, could not afford insurance, and then when I became very ill, it wiped her out financially. I was 16 years old when I was diagnosed with a rare genetic disorder (Common Variable Immune Deficiency). The nature of this disease is that I require regular doctor visits, regular medical tests, and an assortment of medications. I lack all major parts of my immune system, and a common cold or flu could kill me. Quality of life tends to be poor for many, with a certain early death. Having a "pre-existing" condition has required coverage under group plans through employers only. I was 16 years old and still in high school while I worked for medical insurance. When I wanted to go to college, I had to quit my great corporate job, and become very poor in order to get on medicaid for insurance coverage. I could not manage a full time job and college with my health, but I could manage a part-time job and college, yet I was only allowed to earn very little in order to qualify for insurance coverage. This was one of the hardest things I have done in my life--receiving state financial aid. I sat in the parking lot 3 different times, crying in my car, before I could get enough nerve to go inside to apply for aid. I was very well able to provide for my self in all areas, except to cover my outrageously expensive medical needs. My IV medication of Gamma Globulin costs roughly $4000 a month. That is JUST this one medication. My husband and I could not get married until he got a job (post college) with a good group insurance policy so that I could be covered under his plan. Had we gotten married earlier, I would have lost my state coverage as he too would have to meet the poverty level for medical coverage. When he wanted to change jobs after a number of years he could not agree to it until he had thorough information about the insurance coverage that they offered. Luckily my husband can provide the insurance, and he is successful in his career. However, I am scared that without him I may not be able to work for a corporation that has great health insurance. Even if I had the skill set, I might not be well enough to work 40 hours. As of now, I have the best health when I work no more than 20 hours a week, which is recommended by my doctor. I am however, ill at times and am not able to work. I was hospitalized with an infection 2 years ago, and this alone would have been financially devastating if we had not had insurance. We have discussed him leaving his job and opening a small business, but we simply could not do this because the way our health insurance structure is in this country and the high costs of medical care. I appreciate being able to get great medical care in this country, and I rarely wait for any services. I am VERY lucky to have a great husband and that he can provide for me. I pray everyday that I don't lose my husband. Not only would I lose my best friend, I will likely be forced into severe poverty in order to get my medical care through the state. Being ill is enough of a challenge, but to be destitute in order to get medical care is not logical, and is not moral either. I know many many people are destitute financially and ill, and I could be next if my husband is taken from me or he becomes ill. I think insurance coverage for ALL people is a bare minimum. Should it be free? I think it should be reasonable and based on the individual's ability to pay. The health insurance plan that we have through my husband's employer is GREAT. He and our son are very healthy, and need very little care. We still pay for their coverage... and honestly I benefit from all those who do the same. This structure can be transfered to others as well. Reforming our medical and insurance system is critically important, and it needs a major overhaul. I am alive because of modern western medicine. However, I live a better quality of life due to complementary medicine & holistic practices. Our pharmaceutical, insurance, and medical system is seriously flawed. Lets get everyone covered for medical care first and foremost, but there is MUCH work to be done. Big business should not dictate whether our citizens get to live or die, let alone have a good quality of life.
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