I’m High Risk! Or, How I Joined the Ranks of the Un-Insurable

Some years ago, I was approached by a persistent insurance agent who wanted to sell me life insurance.  A small purchase of life insurance then turned into a purchase of disability insurance.  My employer-provided disability insurance as a benefit, but the salesman convinced me that I needed additional insurance to supplement any income I might get in the event that I was partially or totally disabled and no longer able to work.  Reluctantly, I agreed.

As my family grew, I continued to increase my life insurance, so that my boisterous family would be protected in the event of my untimely demise.  Each of these purchases required a physical.  And a lengthy questionnaire about my medical history.  I passed each time with flying colors.

I recently met up with my insurance agent and discussed my current medical situation.  I had avoided the meeting until I knew more about my medical condition.  I had a sinking suspicion of how the conversation might go.  But I also needed actual confirmation of a diagnosis before having the conversation.  I expressed my concern about whether I would able to retain all of my coverage without any further underwriting.  He confirmed that I could.  But then the bombshell.  Due to my current medical diagnosis, no increases would be permitted to my disability insurance.

That’s when it hit me.  I’m high risk now.  Virtually un-insurable on the disability insurance front.

The thought is rather daunting.  Think about it.  I am able to work full-time and carry on most any activity that I want.  There are limitations.  There are some changes.  But the prospect of being unable to work, even full-time, seems unconscionable at this point.

Then you think about the group of underwriters and actuaries crunching numbers and determining how to properly price a premium for disability insurance.  The research and statistics they review in terms of the possibility that the insurance company will eventually have to pay out on a disability insurance policy.  They cannot predict risks like sudden accidents or casualties, which are unforeseeable.  (Unless you disclose to them that you enjoy extreme sky diving and amateur drag racing in your spare time.)  But they can analyze medical conditions and diagnoses and compare data on the likelihood that the prospective insured may eventually seek payment on the disability policy.  In other words, they can look at predictors that indicate the likelihood that you will eventually be partially or totally disabled.

The thoughts slowly get processed in my mind.  I can retain my current policy, because there is no additional underwriting requirement for continuing that policy at its current level.  However, I am ineligible for any additional coverage.  Period.  The insurance company, if the time comes, will pay out on the policy it already issued and that I continue to pay for.  But it will not accept any more risk.  The statistics are not good.  The probability of a pay out on the policy is high.  It is not a risk the insurance company will take.

This is not quite the same as being turned down for a loan or a job or…well, anything, really.  It is a message from the insurance company that there is a high probability that you will eventually be partially or totally disabled.  And there it is. Not even forty years old, and already virtually un-insurable on the disability insurance front.  Damn.

Now, for some good news.  Not all insurance requires underwriting.  Employer-provided insurance benefits are often in the group insurance pool, where individual employees/insureds are not required to go through an underwriting process.  I happen to be with a company that provides disability insurance as a benefit, even now that I am a part-owner and not merely an employee.  That does not go away.  I do not lose that insurance because of my condition.  If I leave here for another job…well, it would be safe to assume that benefits will be a big part of the conversation and a big factor on whether I could ever leave where I am.

Up until recently, health insurance in the U.S. was very similar.  Pre-existing conditions could mark you as virtually un-insurable under private health insurance plans.  Group health insurance through employers was one of the only solutions, and only then if there had been no gaps in coverage from other group plans.  Now, however, under the Affordable Care Act, or Obama Care, pre-existing conditions cannot serve to bar access to health insurance.  It may not be inexpensive, but it is available.  The virtually un-insurable become insurable again.  At least until certain political factions or the justices sitting on the U.S. Supreme Court decide otherwise.

The long and short of it is that I am fortunate that, through a series of completely random and mostly unintentional decisions, I am presently covered with disability insurance through my employer, with supplemental insurance through my private insurance agent.  I am, however, un-insurable for any increased coverage for disability insurance.  At least I know that I am virtually un-insurable.  I’m high risk.  I will not have to go back through the underwriting process.  I will not have to fill out the long questionnaires about my medical history or my hobbies.

Of course, I think being high risk should result from something more awesome sounding.  Maybe I should look into this whole amateur drag racing thing.

3 Things That I’m Thinking About (Transverse Myelitis Edition)

The Work-Life-Health balance has been weighted heavily on the Work side recently.  Work can be a good distraction from some things, but it can be all-consuming if you let it be.  Which is why I am taking this moment to pause and share some thoughts.  There are a lot of things I want to write about, but I have not made the time to develop those thoughts into anything of substance yet.  Until then, here are three things that I am currently thinking about:

1.  Inflammation.  I have read as much information as I possibly can about transverse myelitis, and I am still trying to sort everything out.  However, I ran across a good article recently about chronic inflammation disorders, and how inflammation may be linked to so many other health issues, ranging from heart problems to cancer.  One of the recurring issues I have is trying to figure out what internal and external triggers cause my body the most grief, in terms of flare ups of neurological issues.  It strikes me that there are a lot of similarities between the triggers for inflammatory issues (e.g., foods, stress, environmental changes, temperature, viruses) and the triggers for my own issues.  It seems to make sense.  If there is damage to my nerves already, then it seems logical that triggers that cause inflammation may also cause inflammation in the areas of nerve damage.  Which, in turn, exacerbates the symptoms.  Voila.  A flare up.  While I am learning what to avoid in order to better control the flare ups, I am trying a new focus on connections between inflammation and those flare ups.  I will let you know how it goes.

2.  Support Groups.  While I await results from my blood test on the neuromyeltitis optica (NMO) front, I am looking for good resources and support on transverse myelitis.  I did find the Transverse Myelitis Association (TMA) at myelitis.org.  There is an online forum there to share questions, experiences, thoughts, and comments with others dealing with transverse myelitis.  So far, I have been a watcher on the forum, and not a contributor.  I am glad, though, to have found additional resources.  Although a lot of the contributors have situations not exactly like mine, it is extremely helpful to at least see what others hear/are told by their doctors, and see the comparisons in treatment options.  It certainly makes me more prepared with questions for my own doctor, as we narrow the focus on long-term outlook and options.  I do wonder what other groups (online or otherwise) are out there, specific to transverse myelitis.  I have already found great support with those with similar issues in the multiple sclerosis, chronic illness, and neurological disorders camps.  If anyone has other recommendations or thoughts, I would appreciate it.

3.  Stress.  It is obvious that stress can have some pretty brutal health consequences.  See, for example, Inflammation, above.  It is unfortunate, then, that my line of work basically consists of a high level of stress, day in and day out.  It is the nature of the profession.  What I am struggling with currently, as the stress at work continues at a high level, is how best to manage that stress.  Stress has a pretty brutal effect on my flare ups.  But in my position, it is difficult to slow down, take more time off, or otherwise build in enough breaks to fully manage that stress everyday.  I’m better at it some days than others.  But on days that I cannot manage it well, it can have a pretty gnarly effect on my body, my mood, and my fatigue.  These may be short-term issues, but the underlying problem is systemic.  On those days, I allow myself to wonder whether  it is possible to merely modify my schedule and pace where I currently am.  Or whether, someday in the indeterminate future, there may be a major work change in my future.  The jury is still out.  But they are deliberating.

The View From Rarity Mountain

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I visited my regular neurologist this week, this being the first visit with him after my transverse myelitis diagnosis from the MS specialist.  Unfortunately, the specialist had not yet sent my neurologist his notes from my visit, so the diagnosis was news to my neurologist.  Not unexpected, but news nonetheless.  He did not disagree with the diagnosis, and re-stated his thoughts that he believes that my symptoms were suggestive of early MS.  However, he acknowledged that this could be something like MS, but not exactly MS.  Good to know.

We had a good discussion about where things stood and what we needed to do.  He agreed that it would be prudent to do the blood test to screen for neuromyelitis optica (NMO).  This is where things got interesting.  He knew about NMO and Devic’s Disease.  However, he had to look up the name of the blood test that he needed to order to screen for NMO-IgG.  His notes for the lab were “aquaporin-4 IgG” and “Devic’s Disease”.  The nurse had to check his notes twice in order to get the right blood test ordered as well.  Off I went to the lab.

There was a wait at the lab, as apparently everyone was getting tested for something that day.  When my turn came up, I took the lab order to the technician.  She stared at it.  And stared at it.  And then told me to wait a minute.  And then called me back up and said she had no idea what that test was.  That was not exactly…comforting.  She wrote down some information and sent it to a consultant in another office of the lab.  In order to figure out what the blood draw instructions were, and how the sample would be tested.  Again, not exactly…comforting.

After a wait, she returned and said she had her instructions.  The office she consulted with confirmed that the test could not be done on-site and had to be sent out of town.  But at least we had the instructions for the blood draw and storing of the sample.  She apologized and told me that she had never heard of that test and just wanted to make sure she had what she needed.  My blood drawn, off my sample went to the refrigerator, where it eventually would be then sent out of town for further testing.

I have the utmost faith in my doctors, and I know that everyone I encounter has my good health at the heart of what they do.  But this blood test experience has confirmed several things for me.

First, it is difficult for doctors (and lab technicians) to deal with “unique” medical issues.  Apparently transverse myelitis fits into that category.  It is not an everyday diagnosis, and I have to be patient with health care providers who are dealing with issues that are not common.  My neurologist is “familiar”.  But that does not mean that he deals with very many patients with transverse myelitis.  There is a learning curve for both of us.

Second, this underscores my ongoing experience with patient advocacy.  I am not pushy or overbearing in my appointments.  But I educate myself.  I research.  I ask questions.  I learn from others that I have connected with through this blog and on Twitter.  I make a list of issues and questions, and I go into my appointments prepared.  More and more prepared each visit, as it turns out.  And I am not afraid to make sure I get valuable, quality time with my doctors to explore all of these questions and issues.  My fear is that there are numerous patients who do not advocate for themselves in this manner, and–despite best efforts from their doctors–there are gaps in communication in that doctor/patient relationship.  That is a dangerous thing for a diagnosis process.  I am still working on thoughts on how to help improve patient education and advocacy in this area.

Third, I am the beneficiary of coverage under a very good health insurance policy.  Really, really good insurance.  I have lived life under high deductible plans, plans that require a limited universe of available in-network doctors, and plans that require my primary physician to make all necessary referrals before insurance would even consider getting involved.  But I have good insurance right now, that, thus far, has had no issues with any of my visits, tests, or procedures.  I cannot imagine having to go through this process being out-of-pocket for everything, or having severe limitations on my care options.  Access to good health insurance cannot be taken for granted.

Dealing with a transverse myelitis patient may be rare for my normal health care providers.  I have to be patient.  I have to be prepared.  And I have to understand that we are both probably going through a lot of the unknown together.  Sure, it’s a little scary.  But I’m learning how to tackle this adventure head on.

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