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When Having Insurance Isn’t Reassuring

In a perfect world, those of us with RA would never have to worry about insurance issues.  Our copays would be so low that we would never have to worry about not being able to afford our appointments, procedures, and medication, our insurance would cover any and all treatments, so we wouldn’t have to pay out of pocket for drugs that aren’t covered or alternative therapies like acupuncture.  But it’s not a perfect world, is it?

Hands down, one of the hardest parts of moving has been getting new insurance and having to establish care with new doctors.

The insurance I had before, was through school, but was given to me because I taught undergraduates.  I was a student, but it wasn’t exactly student insurance.  It was better.  It was great, actually.  My copays were manageable.  The financial side of it was great.  The thing that was not so great about it, though, was that while I could pick my primary care doctor from the doctors at the student health center, I couldn’t  pick my specialists.

So I would literally get a call after the referral was processed, telling me who my doctor was and when my appointment would be (and the appointment wouldn’t necessarily be soon).  Obviously, behind the scenes, what was supposed to happen is that the head of the department would study the case and then assign a doctor to the patient.  I don’t really know if that’s how a specific doctor was picked, but that’s how it was supposed to work.

With my new insurance, I actually have to pay a flat fee for the insurance that is through my school, (I didn’t have to pay anything for my insurance before), the appointment copays are about the same, and the medication copays are commensurate with what my other insurance’s copays were going to be this year, but I will actually have out-of-pocket costs in addition to copays.

On the plus side, though, I do get to pick my doctors.  Obviously, reading an online description of a doctor doesn’t necessary mean we will gel in person.  But it definitely feels good to have made a choice that feels at least a bit more than random.  For me, it is important that I see someone who is familiar with both lupus and RA, so that’s the main thing I am looking for in terms of a rheumatologist.

I also still have yet to figure out if all of my medications will be covered, and there are some medication issues that I need to deal with.

The truly amazing thing, though, through all of this, is that my old insurance ended August 31, and my new insurance began September 1.

So thankfully I had no lapse in coverage, but now I find myself back at the beginning. I had to go to the student health center and get referrals to specialists.  And now I am in a holding pattern.  I have picked my internist and rheumatologist.  I am not as picky about my gastroenterologist, nephrologist, and hepatologist, and I would rather get recommendations for those from either the pcp or the rheum before I make decisions myself.

I know how lucky I was to have my previous insurance, and how many people are not as lucky.  So I realize what I am going through now is something that many people struggle with.

Have you had insurance issues?  How did you deal with them?  Do you think that your insurance issues prohibited you from getting the best quality of care possible?


This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.


  • Rita S.
    6 years ago

    Wow… I would have killed for your insurance.

    I got diagnosed in S. Korea (while teaching there) and had a 3 month wait to see a rheumatologist–they had nationalized health care, but I am unsure what they would have done beyond that initial visit, having not experienced it firsthand–I left before that happened because my green card was up.

    Came back to the states, was seen by 9 different doctors (over several months) and told I had about a kajillion different things (some RA, some insane), and was denied repeatedly by private insurance companies because I had a pre-existing condition, even though I never had an actual diagnosis. The insurance companies could agree I had RA before any doctors could. Although I fought this as high as I could go, they used something called the “prudent man” argument: claiming that I should have figured out that I had something serious, a pre-existing condition, and I should have known that I wouldn’t qualify for insurance right off the bat.

    I lost my job due to this, and medicaid refused to accept that I had anything without a diagnosis, so that was not an option. I fought them tooth and nail on this for a couple of years while fighting for private insurance and medicare. Eventually with the help of some shady TV lawyers I got on medicare (which ironically came coupled with medicaid).

    Now, as I begin to work again, I have to keep medicaid to pay for the Enbrel ($32,000 a year) and pay out of pocket for required private insurance, but I’m grateful for that–compared to having nothing.

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