Medical Bullshit

One thing I've been working on for weeks that is completely stressing me out is trying to get my insurance to help me with my Myositis.

Every year for the past few years, I've been traveling to Baltimore to visit the Myositis Center at Johns Hopkins.  It is always tricky because my health insurance is a Utah only plan so they typically don't cover services out of state.  But every year, my current neurologist, Dr. D sends a note to the insurance requesting they consider a consultation.  So far, they have reluctantly agreed....until this year.  I had heard the insurance company has stricter rules on authorizations.  They came back and denied my request.  They indicated I had to see every rheumatologist on the plan  regardless of their knowledge of Myositis nor their specialty!  The really hard part is Dr. D doesn't really have interest in sending me referrals for the 13 Rheumatologists on the plan.  She did send in 1 to Dr. Lee in Salt Lake.  Any others, she said the insurance can arrange appointments since it is their requirement.

I am outraged my insurance expects me to see 13 physicians from Brigham City to St. George before they will consider a claim to see a specialist that knows Myositis!  On top of the time and travel, I would need to find a doctor to send a referral.  Well my GP, Dr. Taylor certainly isn't going to do that either.  There was 1 doctor that has been in practice for a few years that didn't require a referral but he couldn't see me for 3 months!  And the office staff didn't know what Myositis is so I doubt he sees many patients with it.

Lucky or unlucky for me, Dr. Lee declined the referral and sent a note to my insurance that Johns Hopkins is the right place for me to go if I could get an appointment. I also called our Health Advocates we have access too at work to get them involved.  Seriously they were almost more red tape than the insurance however, they did call the 13 specialists on the list to find out if they were taking new patients (many are not) and if they have Myositis patients they treat.  Out of he 13, there were 4 I would need to try to get referrals too and go visit.  I'm sorry but this is all so stupid.  Plus my insurance coverage requires I pay $40 per visit to a specialist so we are looking at $160 out of pocket myself.  Most specialist doctors charge around $300 - $500 for a new patient visit.  This means my insurance would be covering $1040 - $1840 for me to visit these doctors who I know damn well are not as versed in Myositis as the Myositis Center at Johns Hopkins.  It is very likely they would recommend I visit Johns Hopkins any way.  Did I tell you how much I love having a super rare disease that isn't taught in medical school??

During the process, my insurance sent a note stating they received the appeal of my denial and were reviewing it with the medical team. It could take 6-8 weeks for the review.  No sweat.  I got nothing but time.  Haha.  At this point, I decided I do want to go to Johns Hopkins anyway because I just don't have the medical support here from Dr. D.  As an established patient, she usually charges about $250 for the visit which isn't much more than the co-pays I would have been required to pay for the route my insurance wanted me to go.

I also decided that it was probably a good time to look into changing doctors because Dr. D is great and has been happy to see me and send referrals, renew prescriptions, and such but she is not interested in Myositis and isn't keeping up on what is going on.  I get it.  That is fine.  It just simply isn't her area of interest.  But then the grave discovery is that other doctors are almost impossible to get into.  Many doctors feel there isn't much they can do to help a patient with Inclusional Body Myositis and they are super busy so they aren't willing to see me.  What????  Can't find a doctor to treat me??

I have a Myositis friend that sees Dr. Lee and voila' I already had a referral for her.  So I called her office and talked to the scheduling manager.  She wanted me to make a case for why Dr. Lee should take me on and what I would want Dr. Lee to help me with.  Really it is simple.  I want a doctor that is at least interested in Myositis to help me manage this terrible disease.  Let me know what  I can do to live my best life left.  Send me where I need to go to get care (PT, OT, Johns Hopkins, Etc) and track my decline so when I am no longer able to work, I have a case for Social Security disability.  I assured her I am a great patient that most doctors enjoy.  I am proactive in fighting this disease.  I have never skipped an appointment or cancelled last minute.  And I am always on time....or early!  A week later, I heard back that she will see me for 1 visit after my visit to Johns Hopkins to see what they recommend and talk about expectations and if  she can help me.  Seriously frustrating but so grateful I am at least in the door.  I am hoping I can get her to agree to keep seeing me.  I've never had to beg for medical care (well except for when I needed a muscle biopsy from a neuro surgeon years ago).  I fear this is what medical care in the U.S. has come to be.

When I got home from my vacation 11 days ago, I had a letter from my insurance.  It was rather curt but they agreed to cover my visit to Johns Hopkins.  They were very clear this does not set a precedence for future visits and is good for only 1 visit before the end of September.  Okay.  Good.  I'm set.

Well you would think I am set but then I get a voicemail I finally checked last night from Johns Hopkins.  They are requiring a referral for my visit and if they don't have it by Monday, they will cancel my appointment!  The funny thing is my insurance doesn't require a referral.  In fact, they don't want me to visit anyway.  And I am an established patient so why is this coming up now? I sent my authorization to pay letter and I'm hoping that is sufficient since I already have my flights and hotels arranged. It would really suck to show up at Johns Hopkins and my appointment was removed over paperwork that wasn't even needed.  I'm afraid I would sit there anyway hoping Dr. CS would see my pathetic pout and agree to see me anyway.

I have my fingers crossed it is all going to work out.  Frankly it gives me a headache just typing this out.  What a bunch of riga-ma-roll.  I always felt universal health care would make it tougher to get into doctors.  Doctors are busier than ever because more people have access to insurance.  And so doctors are implementing Tiger Mom like coordinators to only allow in the people they are interested in seeing. Indeed it seems to be true.  In the meantime, I have not whispered a word to Dr. D that I plan to change doctors.  Just in case I am kicked out everywhere, I need someone who will call in my prescriptions, monitor my lab work, and help me with documenting my decline.  I never thought I would have to fight so damn hard for standard care.  I hate my insurance but it is the best offered to me financially so I will keep being persistent in my fight.  It is exhausting.  I see why some people give up.