Would you want to know if you had a ticking health bomb?

As I may have mentioned, Bridezilla was diagnosed with Rheumatoid Arthritis a few months ago. She just saw a specialist and found out she’s got the worst possible case – something to do with blood markers (genetics?) that indicate she will never experience remission. Eventually, she will end up on Enbrel – a $1200/month prescription.

I’ve asked two Real World people if I should have my doc include a test for RA in my next batch of annual check-up labs. One said no, she would not want to know, it would change how she lived her life. The other said yes, he’d want to know so he could plan for the possibility. I realized that since RA hits the hands the worst and those are my moneymakers, I should get tested. It doesn’t mean I’ll definitely develop it, and if I do, there’s no way of knowing whether it will be in 2 months or 2 decades. But this not only affects my livelihood – it also influences future changes in health insurance providers. Right now I have a policy that doesn’t cover prescriptions, and if I end up needing a drug like this before a generic is permitted…yeah, you know where I’m going with that.

So given your own circumstances, would you want to know if you had a significant probability of a debilitating but not deadly disease looming in your future? If so, why, and what would you start doing differently?

11 Responses

  1. I wouldn’t do it.

    I struggled with this when my sister wanted us to get tested for the breast cancer gene. Now I am SO GLAD I didn’t get tested because insurance companies can use it to reject you or make it a pre-existing condition.

    I would be very, very careful with these kinds of tests, unless you can do it anonymously somehow. Or, until healthcare is reformed, ha.

  2. Like Dog said – DON’T get tested. Insurance may not cover you, and RA is expensive.

    Based on my personal family history, there are several conditions I am at higher risk for which I have discussed with my doctor. If I started to develop symptoms of any of them, she’d be on high alert and run the full span of tests sooner. I also don’t think I’d want to know anyway – I worry about enough stuff and it’s not going to change anything for me now – I’d still try my best to eat well, exercise and just take care of myself in general.

    I don’t want to sound pessimistic, but I’d be looking into disability insurance if I were you – definitely before you get tested if that’s what you decide to do – because as you said, your hands are your livelihood and you are already at greater risk.

  3. I would not. I have had mine for-ev-er so I adjusted my lifestyle and goals accordingly in a lot of ways (chose not to go to vet school, for one), but having and treating the disease on my record means that I pay an insane amount for a piddly life insurance policy and have no idea if any health insurance would accept me once I lose COBRA.

    Also, I don’t have any of the genetic markers in my bloodwork. It doesn’t mean I don’t experience debilitating symptoms, because I do. It just means that the bloodwork doesn’t really tell you if you’re going to develop symptoms and the disease or not. If you test “positive” or “high” on the RA factor, that goes on your record and you’re penalized whether or not you get treatment for it. (aka: whether or not you cost them anything).

    Heck, I couldn’t even accept steroid treatment when the pain was really bad because it would adversely affect my life insurance application during a particularly touchy time period (pre-termination).

    But then again, on a personal level, I would suggest that you prepare yourself to some degree for the possibility. Check out possible career alternatives if you haven’t already. Get the life and disability insurances now while you still can. Basically just plan for the worst, hope for the best.

    If I had it to do over? Differently? I would have applied for both insurances when I first got the new job before I had a definitive diagnosis. Those are the big picture things. Small picture? I’d have to think about that.

  4. I hope your sister finds a way to afford the medication, one of my closest friends is on it and for her, it’s a lifesaver. Before enbrel she had days where she couldn’t get out of bed. Both her and her sister have RA and auto-immune disorders definitely run in their family. I hope you don’t develop RA, a lot of auto immune research is focusing on triggers and it seems that even if you carry the gene, the switch may be turned off. My father is Type 1 diabetic, which they now believe is a form of auto immune disorder too. He was told I would have a 50/50 chance of also developing diabetes. So far I’m falling into the good side of the odds, thank goodness cause I love my sugar sometimes.

    I think the other commenters were right, best not to have it in your records. Do you have disability (other than SSI)?

  5. It would depend on the condition and if early treatment would make a difference in outcomes. For example, current Alzheimer’s treatments cannot cure the disease– they only slow the decline. If I had risk factors for Alzheimer’s, I would want to know and I would want my doctor and my family to be more alert to early signs. For something like that, I would want treatment as soon as I knew it was medically necessary. It’s just such a brutal disease that I would want to start fighting the decline as soon as possible.

    With respect to you and rheumatoid arthritis… I think if I were in your situation, I wouldn’t necessarily be looking for screening, but I would want to know what the early symptoms were so that I could be alert to them.

    Three other things:
    I’m not certain that Enbrel or something like it would do enough to enable you to continue making a living giving massages if you developed RA. I’m not an expert on RA, but I learned somewhere that RA causes skeletal changes. I’m not sure what those changes could mean for giving massages. You may not want to talk about it with your doctor where it could go into your medical records, but it might be a good idea to find out. If your sister’s willing, maybe she could slide it in as a casual question to her rheumatologist, or you could ask at health fair if they have them in your area. So that you can think about a just-in-case alternate career, if you want to.

    Even if you didn’t have this condition in your immediate family, I would seriously look for a medical plan that provides some sort of prescription drug coverage the next time you’re seeking health insurance. You may not be big on taking medications, but if you picked up the wrong disease or developed the wrong condition and genuinely needed a medication, it could be a pretty big deal financially.

    Third is that if you don’t have it, you may want to look into whether you could get long-term disability insurance and how much it would cost if you got it.

  6. I would want to know. I would need the time to plan for alternative career ideas and to get my long-term heathcare/insurance in order. Just my two cents – for me, I would worry more if I didn’t know.

  7. Agreed on not getting tested – my mom had breast cancer @ 32 and we’re often asked if we want to be tested for the gene. We’ve chosen not to because it’s not guaranteed and doesn’t give the timing. No reason to be living on an eggshell. What you can do is be very aware of early symptoms so that if you do develop it you know as soon as possible. I would also do what CaroleG said above – start planning alternative career ideas and get your healthcare/insurance in order. You can do that anyway, just in case – it doesn’t matter if you actually have the gene or not.

    And as a budding financial planner, I can say without hesitation – if you can afford it, or even if it is somewhat of a stretch to afford it – GET DISABILITY INSURANCE – short and long-term – you will not be sorry!

  8. I would want to know, definitely! Maybe I would start planning now, in the case of RA, doing hand exercises and probably start to eat more healthy. So I’m pro Yes, to your question if you should get checked or not.

  9. I would definitely want to know, but that’s me. I like to be able to plan ahead especially career-wise.

  10. My dad has Rheumatoid Arthritis and for years he was in terrible pain. Now he takes Enbrel and his life is great. He is extremely active, often biking for 30 miles or more on the weekends. He even takes spin classes…I doubt I could even make it through a spin class!

    Cancer, heart disease, and Rheumatoid Arthritis are just some conditions that run in my family. I assume some day I’m going to be hit with something, so I just try to live a happy, healthy life. Even if I was tested for a gene, it doesn’t guarantee that I will or won’t have some sort of condition even if I have a negative result. Why worry?

  11. BF would say no. I can’t even get him to go to the doctor for his muscle/joint/digestive pains.

    I would want to know, because I’m a control freak and like to know everything I can. I guess I’m lucky in that I dont have to worry about being uninsurable, so it’s more a matter of can I handle the knowledge? I would want to do whatever I could to keep myself as healthy as possible for as long as possible, do everything I want to that I might not be able to later on, and just plan for the future.

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