By CRG staff - interview with Terri Carlson

Terri Carlson suffers from a genetic disorder called C4 complement deficiency. Divorced and essentially uninsurable because of her pre-existing condition, Terri created a website,, which has drawn international media attention. She has since become a crusader for health care reform.

I know that since your story broke in the national media, you have received a huge number of marriage proposals. Are you finding they are genuine?

One thing I've learned through this process is that there are a lot of people out there who want to do something good, and would be willing to help somebody else out by sharing their insurance. I've even had twenty year olds in the military propose to me because if they're married they get $10,000 more per year from the government just for being married. So I'm creating a dating website to bring those that are compassionate and would be willing to share their insurance with somebody who can't get it due to a pre-existing condition. It's my own particular way of getting even with the insurance companies – when you marry somebody who has health insurance, the rule is that they can add you within 30 days and there's no preexisting condition clause.

Are there any other loopholes that allow you to get around the pre-existing condition, besides the marriage loophole?

In California you don't have to be married, it can be a domestic partnership. And then I've come to discover you can get around the system by creating a fake business. I can create a small business with my son, sell nothing, and I can apply for health insurance as a small business and they can't ask for my pre-existing conditions.

So basically you have to do dishonest things to be able to get health insurance. You have to marry someone, whether you love them or not; you have to enter a domestic partnership with someone, whether you love them or not … it's almost like what some people do to get U.S. citizenship, only we're American citizens and we still have to manipulate the system to get health insurance.

Was it your goal from the start to really focus on raising awareness?

It started out about me, about my desperation, and then it turned into being about so much more beyond me. I felt overwhelmingly burdened and guilty that I would be finding a solution because of the notoriety I received while others wouldn't. So I'm creating this dating website – which, by the way, is going to be free. It's my own way of dealing with the pre-existing conditions problem until Obama's plan goes through. And if it doesn't go through, there really aren't a lot of options for people like me.

Have you encountered any opposition, anyone telling you they don't like what you're doing?

When the story first came out here in San Diego, I read the blogs on it the next day and there was some rough criticism in the beginning, mainly that this was somewhat similar to prostitution. Some people were pretty harsh about it, but as it continued to come out in the media, people started to see that this was serious – these are real-life concerns.

People who don't have insurance don't understand what it's like to be a person like me. It can be hard for them to be compassionate. They can tell me: "Go get a job that provides health insurance." But because of my disability, I can't be out in public very much – I try to live a fairly normal life but I have to be very careful of infection, and I'm in pain every day and can't stand long. I do have a job, working from home for a company that hires disabled people, but if not for this job I just wouldn't be able to work. And because the entire company only hires people with disabilities – which, by the way, they get money from the government for doing – they can't provide health insurance.

And they don't allow you to use your spouse's Social Security credits if you are divorced or disabled, and since I was a stay at home mom for 23 years I wasn't paying into my own Social Security. I'm stuck in the middle. I went to get Social Security insurance through the government, but you can have only $2,000 in assets to your name to qualify. So here I am a disabled person, and I can't get either. I'm still on my husband's COBRA, and I'm paying 90% of my income for it. There are no other options for me.

What justifications have insurance companies given for denying you coverage?

I got my genetic testing results back in 2003. Before GINA (the Genetic Information Nondiscrimination Act), the insurance companies flat out said, "because you have C4 complement deficiency, we're not going to insure you." After GINA, the way they respond is: "You have been in the hospital twice this year with an infection, and therefore we are not going to insure you" – not stating that the reason I was in there was because of the genetic problem. They say they're not discriminating against the genetic defect, but they are discriminating against the symptoms of the genetic defect. They're still using my DNA test results against me – they had my genetic information before GINA, so they already know my condition.

Did you know you had C4 complement deficiency before the DNA test?

No, I didn't know until the test in 2003. I had been sick for years, and since I was adopted I didn't have a family medical history. I had a doctor that did some general genetic testing, and something came back about my C4 being messed up. So my doctor put me in touch with a genetic researcher, Dr. Yung at Ohio State University. He's the only genetic researcher in the whole United States who studies the genetics of C4 deficiency complement disorder. So I had my blood and my children's blood sent to him, and he's the one who broke down the analysis on what was missing.

When you got those tests, did your doctor or Dr. Yung talk to you about what might happen to the information that came out of those tests?

Nope. He faxed it to my doctor when it was done. He said he couldn't release it to me, he had to release it to my doctor. So right then it became a part of my file.

Before the C4 test, what was involved in the more general test your doctor had done?

He ran a complement profile and saw that something was wrong with my C4. My disorder is the number one genetic marker for lupus, so he just did a test looking for deficiencies. What he wasn't expecting was for me to have a complete genetic deletion, which is extremely rare. There are only a couple of people who have what I have. It's actually more common in Finland – they have an actual complement unit there – but it's not very common here, and there's not very much research being done on it.

After the first test came back, my C4 wasn't registering, so they sent it to Dr. Yung, and that's how I found out more specifically about my genetic defect.

When did you first realize this would be an insurance problem – or since you were covered under your husband's insurance then, did it not cross your mind?

My husband worked for the state, and I had the best insurance on the planet. I never had to worry about insurance until two and a half years ago, when I had to go on COBRA. And so I tried to get insurance on my own because I can't keep up the cost of COBRA, only to find I can't get it at any price.

Then I started to research the rules in California, and when your spouse puts you on a policy the insurance company can't ask about your preexisting conditions. That, or you can create a fake business and get insurance that way. So here we are in the United States, and you either have to be deceptive and marry someone for their insurance, or you have to be deceptive and create a fake business in order to get health insurance. How sad is that?

I've done interviews all over the world – Germany, Belgium, France, Canada – and they are just astounded. And in the U.S., there are other people who have lost everything because of their medical bills and are literally living on the streets because of it. They're caught in the middle, just like me. I've even said I could commit a crime because I could go to jail and get better health care. I could get three meals a day, get all my medical care, and work out at the jail gym all day. Ironically, I said that in an interview and got an email from a lady who had already looked into it. She was dead serious. She said, "You have to commit a federal crime, so I was thinking I could rob a post office."

Have you found that other people are looking to do the same thing, to marry for health care?

Oh, multitudes of people have emailed me and said "I've already done it." It's been done for years, it just hasn't been talked about. A lot of people don't understand. They'll say, "Oh, she hasn't looked into everything." Well, hello! I have looked into everything. This is real for me. People will say "This has got to be a scam." Some people think I was hired by the Democrats. I've never heard from President Obama! But I get that all the time. Even CBS, when I did the Early Show – at the bottom of the video it said "Hired by Dems?" People could be pretty harsh, especially at the beginning. But that's because it is outrageous – and they can't believe it could be true because it's so outrageous. But that's the point. This is my life.

Out of all the positive and the negative, what has surprised you the most about the response?

It surprised me the most that there were thousands of people that are sicker than I am that were begging me to send some of my 'suitors' their way, or to set up a dating website. It was astonishing. To me, if one person can learn from my story and get help, it will be worth it. I've had a lot of opportunities come my way during all this. They want to do a Lifetime movie, they want to do a reality series, and I've struggled with doing any of that because I feel almost like I'm selling out other people who aren't going to have these opportunities, and I don't want to cheapen the process. And on the other hand, I really could use the money to help myself.

Do you think you really will end up marrying for health insurance?

In the beginning of this, I thought for sure I'd have to marry some random guy I didn't even know for health care. But, you know, with 10,000 emails, the hope is to be able to have both love and health insurance.

Note: The recently passed health care bill protects children from being denied coverage because of pre-existing conditions effective immediately, but does not extend those protections to adults until 2014.

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