Part Two: Know your insurance, understand the appeal process, write the letter and follow up.
This is part two of my episodic retelling of battles fought, questions asked, and lessons learned this calendar year or in other words, six months post-transplant to present. If you’re new here, read part one first.
In an uncharacteristic for me opening, I’m giving the moral of the story up front. Put things in writing. I know it takes time and precious energy, but writing is still the best.
I’m a huge fan of electronic statements, using the mobile app and saving paper in every aspect of my life except insurance. With each of the requests for insurance approval and subsequent denials, I was mailed a paper copy of the denial ruling to my home address. I kept them all.
Denial from my insurance dated 02/23/23:
“Following the review of all clinical information provided, a determination has been made by our medical director, to deny the coverage for this service.
- Service Request: Acute Rehab – Denied
- Denial Reason: Services can be provided safely at a more efficient level of care. Patient does not meet clinical criteria for acute rehabilitation facility admission based on their current level of function. A skilled nursing would be appropriate based on member’s current level of function.”
Denial from my insurance dated 02/24/23:
“Following the review of all clinical information provided, a determination has been made by our medical director, to deny the coverage for this service.
- Service Request: Acute Rehab – Denied
- Denial Reason: Denial upheld on peer to peer review. Services can be provided safely at a more efficient level of care. Patient does not meet clinical criteria for acute rehabilitation facility admission based on their current level of function. A skilled nursing would be appropriate based on member’s current level of function.”
Can we take a moment and dissect the above? On the advice of my specialty, trusted and rather brilliant MS team, I followed their recommendations in order to get the level of care I needed to recuperate. We had seen it happen many times in the previous year. Insurance was worried about an “efficient level of care” not the best level of care. What metrics were they using to determine my “current level of function” and how would they know what my body needed to heal for such a new procedure? I am not privy to that algorithm or formula. I am not a part of those conversations. I can’t see what’s been written and documented in my medical record. Also, they spoke to my care team in the “peer to peer” review. They denied me still after hearing from the men and women personally taking care of me!
This is what I mean by an emotional and mental cost. I felt abandoned by those who promised to take care of me. I was Frankenstein’s monster while Frankenstein was on vacation. It’s a lonely and isolating experience and the only thing to do is appeal — to tell your story, take it back from the doctors, and provide the human element in your own words.
How to appeal
There is very clear language provided in both letters that I was allowed to appeal. The first letter under “Member Appeal Rights” details how I could appeal by phone, how to ask for an appeal in writing, what information to include and the two-level appeal process. The subsequent denial letter clearly informed me that their upheld denial did not impact my right as a patient to appeal. But it did inform me to reference the first letter and did not include the how to appeal information again. Save your papers.
I was discharged from acute rehab on 3/9/23 and according to my denial letters referenced above, I had 180 days (6 months) to appeal their decision. I have a very important folder in my personal files, old school labeled with a sharpie, for MEDICAL documentation.
I referenced my snail mail hard copies of the denial, logged into my insurance website and referenced communication from my employer’s health plan. I used the very language they stated, repeatedly in my appeal letter. I was specific in my word choice and addressed their argument head on.
Appeal submitted 03/23/23:
I was still not well but had tackled my movement goals for discharge from acute rehab. I could make it up and down the necessary stairs to be at home, living independently, able to feed my dog, and myself and exist safely. But I was still on medical leave and short-term disability from work. Even more than my physical struggles and limitations, I was mentally not ok. I was so far from ok. No stranger to FMLA and short-term disability leave with work at this point, I was still reticent to admit that while my body was healing, my mind was not. As if physical ailments and recuperation are more deserving than mental ones. Because they are easier to see, do they matter more? I needed to address my emotional and mental needs.
In the midst of dark, depressing and demoralizing days, I wrote the below appeal letter.
To Whom It May Concern,
I am writing at this time to request an appeal for the acute inpatient rehabilitation services I received from March 2 through March 9, 2023. At the time of service, given insurance denials, I paid for one week of acute rehab personally, out of pocket.
For clinical background, I was the 10th person in Cleveland Clinic history to receive an autologous bone marrow transplant (HSCT) for treatment of multiple sclerosis (MS). This is part of an on-going clinical trial, BEAT MS, at academic medical centers throughout the U.S. I received my transplant outside of the clinical trial and was covered by insurance, under my employer health plan in full, last year.
From the beginning, my neurology and oncology teams told me this was at least a year-long recovery. I was told that they were unable to predict what would happen to me or how my body or my current MS disease burden would handle the rigorous treatment. Following my initial dose of chemotherapy in May 2022 and during the transplant process in June and July, I was rendered paralyzed. Following both instances in 2022, I was able to regain function, walk, and live independently with fortitude, hard work, and specialized physical therapy.
HSCT gave me a brand new immune system necessitating the receipt of all childhood and baby vaccines again. Eight months post-transplant, with a weakened immune system, I contracted shingles. I was once again unable to use my legs, take stairs, or stand without a mobility aid from the intense medication regimens trialed to treat shingles and address the searing nerve pain — including opioids, muscle relaxants, and anticonvulsants.
According to my denial correspondence, “Patient does not meet clinical criteria for acute rehabilitation facility admission based on their current level of function.” Given the unpredictability of my MS disease in general, the changeability of an individual’s response to HSCT, and the novelty and innovation of this treatment for patients with MS, I cannot understand the insurance review and repetitive subsequent denials. Clinical experts are trying to determine if this is an effective treatment as we speak, as well as appropriate care paths following transplant. I am disheartened that a determination was made that goes against every single inpatient neurologist, PM&R, and occupational and physical therapist that I saw during my hospital admission, as well as my long-standing neurological team that brought this treatment to me in the first place. My previous history of paralysis, loss of motor function and stability, and the subsequent return of function following skilled physical therapy is a clear pattern for acute rehabilitation needs given my function at that time.
How can insurance cover the medical experimentation and not the aftercare needed?
Following a peer-to-peer review, why was the medical recommendation from my entire team ignored in favor of cost savings?
Lastly, as I am writing this after having undergone acute rehab, I can share demonstrated, quantifiable gain. Over the course of my week in rehab, I participated in more than three hours a day of skilled occupational and physical therapy. Every single therapist I interacted with, mentioned my grit and determination and confirmed that I was in the right place to get better and improve. I tracked my participation and after five days in rehab the following improvements occurred:
- Upon entering rehab I couldn’t lift my feet, 5 days later I could
- Upon entering rehab I couldn’t march, 5 days later I could
- Upon entering rehab I couldn’t stand longer than 45 seconds, 5 days later I stood for more than 5 minutes
- Upon entering rehab I couldn’t go upstairs, 5 days later I went up 15 stairs
- Upon entering rehab I couldn’t get down and up from the floor, 5 days later I transferred from the floor to the chair
- Upon entering rehab my distance walk was 45 feet, day 2 was 70 then 76 feet, day 3 was 90, 64 and 70 feet
Most importantly, upon entering rehab it was unsafe for me to live in my multi-story home and I was a severe fall risk. A week later upon discharge, I returned to my home and am living independently.
Cleveland Clinic is a world-renowned organization, known for its focus on research and innovation. As an employee of this eminent institution, I ask your careful review of this insurance claim and treatment, retroactively. I have demonstrated my need for acute rehab services in both its validity and efficacy.
Medical progress does not occur without willing individuals. I was willing to try a grueling, life-altering treatment and only asked my healthcare provider and employer, to help me stay mobile and independent.
I would ask any individual that reviews my claim: What price would you pay to be able to walk?
Sincerely,
Carolyn
Pay attention to the details
Redacted for privacy reasons, please note that I included the following information along with my letter:
- The current date to document when I was sending the letter, to ensure in multiple ways, that I was within the appeal deadline.
- I included all the tenets of a formal business letter with TO: My insurance provider and their legal address typed as well as all of my personal and insurance information including name, address, insurance group number, ID number, date of birth, service request, dates of service, and the specific insurance claim review/denial number.
- I also noted on my hard copy that I was cc’ing my personal MS specialist/neurologist. I informed him, in advance of sending, that I would appeal their decision and share my communication with him should they reach out for additional clinical commentary.
In the midst of my grueling and exhausting week in acute rehab, I kept a notes app on my phone tracking progress. I knew I would appeal insurance even before I checked in. I wanted metrics they could not refute. I wanted to track what I did each day, in each session with OT and PT because my normally reliable memory could not be counted on given my current mental state and exhaustion. I asked each person I interacted with if they thought I was in the right place. I’m chatty by nature, but this was deliberate. I wanted their professional, skilled opinion to see if I was being unreasonable in my desire for intensive rehab and therapy. If they thought my goals too lofty.
In each conversation I had, I was told I was in the correct place — the facility I needed to improve.
One of the doctors at the acute rehab facility upon learning I was a self-pay patient asked which insurance I had. He openly told me, “Oh they never approve acute rehab. They are known for their denials.” WHY IS THIS OK?!?!?
Submit every way available
I am, in general, extremely mistrusting of insurance and companies. I cover all my bases so a company can’t deny based on a technicality. I mailed a signed hard copy of the letter directly to my insurance company. I emailed a signed PDF to my neurologist. I also shared the appeal letter with my employer who oversees medical coverage. Using a fax app (why do we still even have fax machines for goodness’ sake?), I faxed the denial letters, appeal letter and cover sheet with detailed information directly to the provided fax number at my insurance company. Lastly, I called them directly to go on record as having done so.
I submitted my appeal every way available.
This may seem like overkill, but I will never know which method got to them first, who reviewed it, or how it was processed into the system.
A positive outcome
Over a month later, I received a reversal dated 04/27/23:
“… our Medical Management Department has received notification of an appeal request for services as detailed below. Following the review of all clinical information provided, a determination has been made to authorize services as follows:
- Service Request: Acute Rehab
- Dates of Service: 03/02/2023-03/09/2023
This determination is related to coverage of the requested service only. Payment of benefits are subject to all terms, conditions, limitations, and exclusions of the member’s contract at the time of service. Authorization is not a guarantee of eligibility; reimbursement will be made based on eligibility at the time service is rendered.”
This was a victory. But the fight was not over – far from it. I took the win, called my parents, texted my neurologist, and emailed the last in-patient doctor who had fought so hard for me. This was a big win.
But as you can see above, the language is specific. The reversal was not an instant refund of the $10,000. There was an even greater administrative burden, follow up and doggedness required.
To be continued
My Chronic Library 