And by the way, even though this is a crime story, and it is tempting, I'm not going to get into any further discussion of the mafia - Italian, Jewish, Vietnamese, Russian, or otherwise.
This is all about Aetna.
If you've been keeping up with my transverse myelitis (TM) progress notes through this blog, Facebook, or other more personal means, you may already know that despite my three+ weeks of hospital stays for treatment (IV Solumedrol, plasmapharesis, and IVIg), I have had good, bad, not-so-good, not-so-bad, and this-f*cking-sucks days--all of which are to be expected for TM sufferers or recovers (choose your own glass).
Post-treatment Love Story
After my last hospital stay, which ended 10/28, hackneyed hope gently reentered my spectrum as I started to feel stronger. I could almost open doors without grunting, my myoclonic spasms seemed to be getting a little shyer, my tremors less tremor-y, and my pee even once made its debut less than 15 minutes fashionably late from the time I took my seat. Hooray! Bravo! Encore!
Was it the treatment? Was it the meds? Who cares! I could pee! One day, I felt so "strong," I thought I could walk without my cane.
But then the falling started, and the spasms increased, and the neuropathy returned, and all the other symptoms that remained or showed up at my doorstep continued to increase their passion for being with me. (If I had any sex drive, I'm sure I'd be able to rock their world right back...sorry mom/bro.)
I'm over the bad romance novel metaphor too, and I'm meandering from my point, so I'm going to expedite it now in list form:
The Insurance Corruption Timeline
- Release from 2nd hospital stay for first round of treatments of plasmapharesis and IVIg
- NOTE: Aside from meds (mainly a stew of narcotics and steroids), the treatments I have received over both hospital stays, are the ONLY THREE treatments for people with TM.
- Catch up on mail; organize medical docs.
- Continue to receive multiple "THIS IS NOT A BILL" letters from Aetna indicating payment denied(to the hospital) for all plasmapharesis and IVIg treatments.
- NOTE: Received first of these while in hospital. Hospital caseworker explained denials will be appealed, but either way will not be my responsibility--financially, legally, or another lost minute of managing my third job: being sick.
- Pre-treatment symptoms begin worsening.
- Begin falling.
- Other new symptoms arise and continue to increase.
- Call Dr. Schwartzman.
- He decides to start home IVIg treatment ASAP.
- Chooses Tuesday 11/18 (following insurance requests, referrals, scheduling, etc.).
- I request Wednesday because of major client meeting on Tuesday.
- Aetna denies IVIg treatment (but not the surgery...hmmm).
- Dr. S's office schedules appeal (peer-to-peer review) of coverage denial with Aetna.
- Assumption: Treatment will be approved.
- Plan: go forward with surgery so we're prepared.
- Portacath implant surgery at Hahnemann with Dr. Pavlitis. (my 2nd port implant surgery since 10/15).
- Hoping appeal is approved and treatment can start today.
- Aetna caseworker assigned to appeal (she is my advocate not Aetna's), suggests I could get a call that treatment could start as early as next day.
- Return to work - in post-op pain and not on pain meds so I can function.
- (Sidebar: Being sick in this economy does not provide the luxury of basking in one's own pain.)
- Waiting for call to leave to start IVIg.
- No response from Aetna on appeal. No treatment today.
- Bandages off. My once dancerly perfect sternum disfigured and no hope for treatment soon.
- 3:45PM: Caseworker calls. Appeal denied by Aetna.
- Next step: Appeal the 2nd denied appeal.
- Call Dr. S's office for direction. Appeals person is out until Monday.
- Symptoms continue worsening at faster pace.
- Fall four times. Once hitting head on toilet seat.
- Seeing double, etc., etc., etc.
- 3:50PM: Receive direction from Dr. S's office.
- 3:55PM: I leave voicemail to file 2nd appeal with Aetna. Message says they check voicemail every 2 hours.
- Emotional breakdown. Go to Creative Lounge and sob...and sob...and sob.
- 4:35PM Aetna's calls: I file appeal. Told their response takes up to 15 days. If denied, one more appeal available to me.
- I leave message for Dr. S: How to manage the pain, falling until treatment is approved.
- 6PM Dr. S calls: Can't wait that long for appeal process.
- Must begin 2nd round of plasmapharesis (much more invasive than IVIg) this week as outpatient.
- I'm still in pain from port implant surgery. Entire body hurts from TM.
Forthcoming tentative schedule:
- Surgery to remove portacath implant and replace with permacath implant
- Begin outpatient plasmapharesis (5 days, approx every other day)
- Continue to wait for word from Aetna on IVIg approval
- Once/if IVIg is approved, 4th surgical port implant prior to IVIg treatment
If There are Only Three Successive Treatments Available for a Rare Disease, How Can an Insurance Company Consider any of them to be Experimental, and therefore Deniable?
The only treatment that Aetna will pay out for TM is steroid treatment. IV steroids are just the first step in treatment for many patients with TM.
Firstly, because like with me, it may have no positive effect on the disease. Secondly, it doesn't have enough of an effect for the patient to regain as much function as possible.
So, because Aetna considers two out of three of the treatments for TM to be experimental and therefore not cover-able, I, and other patients like me, will have/had:
- 2 unnecessary surgeries
- 2 consecutive weeks of unnecessary post-operative surgery pain
- 1.5 weeks of continually worsening symptoms, including multiple falls
- A 2nd round of plasmapharesis (an invasive and exhausting treatment), during which time all of my blood will be removed from my body and replaced over a period of 5 treatments every other day: 66% of my blood will be removed during each session, plasma separated from blood, and replaced with albumin (you can see pics of my first round of plasmapharesis)
- 6 additional outpatient days in the hospital
- 6 separate days of hospital registering and waiting for patient transport
- 6 days where I will be forced to work from home (possibly putting my job in jeopardy? or at least making co-workers' jobs more difficult)
- 2 weeks of being at high-risk of port infection (the permacaths have high risk of infection and are rarely used in outpatient treatment for that reason)
- 2 weeks of 30 minute prep if I want to take a 1/2 shower (the permacath cannot get wet; NOTE: I will be posting video of the shower process soon. In the mean time you can view these pics here. Some of them contain nudity.)
- Emotional stress of not knowing
Aetna positions itself with a definitive mission:
"We're dedicated to helping you stay well - in every way. See the difference Aetna can make for you."
This is the very same company that withholds access to the treatments that so many sick people need not only to "stay well" but to function or even to stay alive.