305 views
New Reviewer
4 comments
stars-rating-full stars-rating-full stars-rating-full stars-rating-full stars-rating-full
1.0

My daughter, Savannah, my wife Lori, and I wanted to thank so many of you who donated to help Savannah recently so we could purchase a wheelchair lift to get her in an out of the new house weโ€™re renting. Itโ€™s been such a blessing and was a difficult process to go through, one of many over the past year.

We also wanted to ask your help in spreading the word about another stumbling block to Savannahโ€™s recoveryโ€”our Blue Cross Blue Shield of Tennessee health plan (through my employer) has a limit of covered outpatient physical and occupational therapy visits per yearโ€”twenty. Because of the unique nature of Savannahโ€™s disease, her only hope of achieving a complete or even a useful recovery, is for her to have regular PT/OT for the next year to two years. But BCBS-TN has denied our requests for additional rehab visits not once, not twice, but THREE times, this time after I showed up in person at their Grievance Committee meeting to plead Savannahโ€™s case.

For those of you who are new to her predicament and our circumstances, let me give a little summary and bring you up to speed on the current issue.

Eleven months ago Savannah began waking up early in the morning with headaches and nausea, this persisted for more than a week, and then became accompanied by numbness in her feet/toes. After a week of this not getting better, but steadily worse, she had an eye exam that revealed swelling of both optic nerves. This prompted an MRI of the brain, which revealed a very large cyst pressing on and wrapping around the most vital parts of her brain. Within a week she had a craniotomy, brain surgery, and she was blessed to have a wonderful surgeon; the mass was nearly entirely removed and she wasn't expected to have any lasting problems.

However, a month into my recovery, though, her toes began getting numb again, it became harder and harder to climb the stairs to get to her bedroom and her vision started to worsen. After slowly getting worse over a few weeks and after numerous doctor's visits, she was diagnosed with CIDP, a chronic form of Guillain-Barre syndrome which causes paralysis starting in the toes and fingers and works its way up your limbs. Sheโ€™s been confined to a wheelchair for the past seven months and hasnโ€™t been able to do the most basics things for herself such as get dressed, shower, or use the toilet. She became wheelchair bound and therefore was unable to sleep in her own bedroom because she couldnโ€™t climb the stairs to her room. Sadly, she had to spend the better part of six months sleeping in the dining room.

A couple of months ago we were preparing to leave the house we were renting to move to a different rental house where Savannah could have a bedroom downstairs, the city of Brentwood, Tennessee forbade us from building a wooden wheelchair ramp in the front of the house, leaving us with only two very expensive options: a metal (and very large) wheelchair ramp or a wheelchair lift, both of which would cost thousands of dollars. After using all the money we had saved on medical bills, we knew that this was going to be impossible to fund by ourselves.

That's where you stepped in so graciously and generously with your time and donations--we were able to buy and have a talented friend install a wheelchair lift so we could Savannah in and out of the house.

A little background on CIDP may help you better understand what Savannah's been going through and why our plea for help is so crucial. Our bodies are supported by and are able to move and do so many things because we have muscles, ligaments, tendons, and skin attached to a framework, our bones. But without the "wires" from our brain and spinal cord--our nerves--sending necessary signals to our limbs, our arms and legs would be lifeless appendages. We wouldn't be able to walk, pick up objects, blink or even see or talk. Our nerves are an indispensable part of our body's ability to function in the most basic of ways. If someone has an accident and the nerves in one arm are damaged, for example, eventually that arm, the hand and fingers will start to freeze up--the joints of the fingers and hand will become immobile and the muscles in the arm and hand will whither away.

Chronic Immune Demyelinating Polyneuropathy, or CIDP, is an auto-immune disease where the nerves all over the body become stripped of their conductive coating and become damaged. The nerves that are mainly affected are the ones controlling the fingers, hands, arms, toes, feet, and legs. Without these nerves functioning, you can't feel your hands and feet, the muscles in the legs and feet don't work and so walking becomes impossible, the fingers and hands become useless appendages and in Savannahโ€™s case, she even had damage to her vision and her voice for a while. In the case of CIDP, there is a blaze of damage inflicted on the nerves by the immune system. It takes days of antibody injections, or IVIG, and in Savannah's case, weeks to months of regular steroid infusions to finally put out the fire of her immune system attacking her nerves. Until the immune system attack on her nerves was controlled and stopped, she continued to get worse on a daily basis, which happened for the first four months of her disease. In fact, her pediatric neurologist, an expert in CIDP told her that she was one of the worst cases he had ever seen.

Now that the immune system fire has finally been put out and she is slowly being weaned off of steroid injections, we can only wait for the body to heal itself and the nerves to regenerate. It is an agonizingly slow process because the nerves regenerate at about a millimeter a day--when you think of how long the nerves are that leave your spine and travel all the way to your toes, you begin to understand why her recovery is measured in months to years.

Now, returning to the scenario of the arm with the damaged nerves, without functioning nerves the arm would eventually become a frozen, withered stump. This is because there is no direction from the nerves to keep the limb moving and the muscles active and healthy. Normally, when an injury like this happens, physical and occupational therapy are done to keep the joints in the arm flexible and mobile while healing is occurring, to prevent the muscles from wasting away from disuse.

Our health insurance policy that I have through my work is a plan offered by Blue Cross Blue Shield of Tennessee. Our plan limits the number of outpatient physical therapy, or PT, and occupational therapy (OT) visits that Savannah can have over a single year's time to twenty visits of each. If Savannah had reconstructive knee surgery or broke a leg and needed some rehab visits, twenty visits would likely be enough to aid in her recovery. However, CIDP is a very different beast. Because it's going to be a year at least and maybe up to two years before all of her nerves are expected to heal, Savannah will need at least two PT visits and one OT visit per week for that entire time to make sure that her joints, muscles, and bones don't freeze up and become permanently dysfunctional.

Utilizing the regular therapy that she has needed so far this year, her allotment of outpatient therapy visits expired in April. After that time, her doctors petitioned for additional visits and we were mailed a denial letter. The reason? Our plan doesn't allow more visits. Most of us know that health insurance companies make a profit by denying more services than they approve, but I figured that once a second, detailed appeal was made on Savannah's behalf, the medical facts would clearly demonstrate the need for more therapy and our appeal would be approved. After making this second appeal and waiting for a couple of months for a response, it came with a resoundingly impersonal but technical denial. The reason? AGAIN it was because our plan says we can't have more visits.

We were offered the chance to make one FINAL appeal, advised to make any and all medical records available to the Level II grievance committee who would hear this third appeal and to have any and all statements by us and her doctors available for them to review. I was given the option to call in to participate in the meeting or I could even go to Chattanooga to be at the meeting in person--I took the day off of work because there was no WAY I was going to miss this chance to appeal to Blue Cross in person. I mailed in EVERY page of documented medical records from all of her hospitalizations, tests, clinic visits and rehab appointments, which amounted to about one and a half reams of paper. I gave an impassioned plea to the eight-member committee over about ten minutes, including having her pediatric neurologist call in during the meeting to provide a very specific and concrete testimony of the vital need for her to have continued therapy visits. After I nearly broke down in tears in front of this committee, part of me thought there was no way they could deny our request. Unfortunately, the part of me grounded in reality knew such an approval would be too good to be true. As expected, I was informed a few days ago that our third appeal was denied. Again, we were denied because Blue Cross Blue Shield of Tennessee didn't WANT to pay for more therapy visits and had their butts legally covered by our policy limitations.

After all of the trials she has gone through so far, and for the long and difficult road ahead, the only way she is going to recover fully is the passage of time needed for the nerves to heal and for her limbs to be functional when the nerves finally start working again. While we can do some PT and OT exercises and therapies with her at home, we have neither the necessary equipment nor the training to provide her with the functional equivalent of skilled PT and OT therapists. Even at a cash discount, each of these visits cost at least $100, meaning the monthly bills would be prohibitively large. After watching all of our savings vanish in a puff of hospital-debt smoke, we don't have any hope of affording this continued therapy.

We recognize that we have been blessed to have insurance at all, because we wouldโ€™ve been destitute from medical debt without it. However, as many of you with employer-sponsored health insurance plans know, the choice of three insurance plans to choose from when we signed up was really just one plan with three levels of deductibles, co-pays, and premiums. All of the benefits are the same--there wasn't a particular plan we could choose that would allow her more rehab therapy visits.

We understand that Blue Cross Blue Shield of Tennessee was legally within their right to deny us according to the limitations of our health insurance plan. While repugnant, they are effectively legally shielded from having to pay even a dime more than their policy allows. However, ethically we think Blue Cross Blue Shield of Tennessee is playing the role of bottom-feeder quite effectively--do just enough to satisfy the law and deny any and all other requests to maximize profits.

Logically and from a business standpoint, it makes perfect sense. Why pay for something that can potentially affect their bottom line. After all, we, the insured signed the contract and they're just honoring it (if you can call it that). However, their argument falls apart through logic as well. Why would they spend thousands of dollars in her care, through multiple hospitalizations, procedures/surgeries and doctors visits to restore her health, and then refuse to pay for the therapy on which her ultimate and complete recovery hinges on? Because in the end, these health plans have been carefully constructed to produce the maximum profit--even if they have to pay for hospitalizations, durable medical equipment and numerous doctors visits, if they deny enough critical, but EXPENSIVE benefits, their bottom-lines will be boldly black and no one will have to see the crimson stain of blood on their hands.

If you have experience battling the big health insurance companies and have some pearls of wisdom that we could use in our fight, I would welcome and appreciate your advice. If you have a bright idea that we have not thought of or know of an avenue that may be able to help us, your thoughts would be greatly appreciated. Having already looked into many possible sources for help, I came across numerous programs, both private and government, that are available to help patients and families in our situation--unfortunately we do not qualify for a single one of them because my salary as a physician disqualifies us. I could write volumes on how society's image of the average physician from decades ago--the Porsche-driving, jet-setting doctor living in a million-dollar homeโ€”has become an apparition years after the suffocating grip of managed care and government-driven health care took effect. But suffice it to say, a cross-country move, starting a brand-new medical practice from scratch, combined with a student-loan debt that would make most third-world nations blush and the thin-air of the tax bracket I reside in are not a recipe for being able to privately fund on-going rehab therapy out-of-pocket.

Savannah has one of the most genuinely happy dispositions that I've ever seen--she's always been a vibrant, active, and intelligent but precocious girl. But as she starts her senior year of high school, instead of taking part in new clubs, swimming on the swim team or acting in the school's theatre production, she'll be dropping her pencil every few minutes while trying to scribble answers to homework that are legible enough for her teachers to read and learning how to dress and bathe herself. While we once dreamed of seeing her walk across the stage at graduation, we are just hoping she has the stamina and perseverance to finish her graduation requirements on-time, only attending school for half of the day this year. We still expect her to be on that stage at the end of the year receiving her diploma, but we will be hoping that she doesn't get her fingers caught in the spokes of her wheelchair just before her big moment. Our faith in God and in her eventual healing and recovery are strong and so we know that one way or another, God will help heal her. But the thought of her possibly not recovering her function completely breaks my heart and makes me sick at the same time. The fact that a multi-billion-dollar industry giant like Blue Cross and Blue Shield of Tennessee builds the showcases displaying the golden parachutes of their executives on the stacks of our premium money while denying her the services she so desperately needs is even more sickening.

We could so VERY much use your help in getting the word out about Blue Cross Blue Shield of Tennessee because their business-driven, ethically bankrupt stance is preventing my sweet daughter from healing and may permanently disable her. We need Blue Cross Blue Shield of Tennessee to get the message loud and clear that we need them to do the right thing and not the financially expedient thing.

Reason of review: Won't pay for vital rehab services.

Preferred solution: Pay for two outpatient PT visits and one outpatient OT visit per week for at least 18 months.

Blue Cross And Blue Shield Of Tennessee Cons: Refused to pay for necessary rehab visits.

Location: Brentwood, Tennessee

Do You Have Something To Say ?
Write a review

Comments

chat-icon

Please avoid publishing any personal information and promotional content

You will be automatically registered on our site. Username and password will be sent to you via email.
Post Comment
Guest

I don't know how old she is , but there will be a way to get her disability, and then get the state to kick in and pay after BCBS You just need a really good state worker

ramjet

If you want anyone to read this report you need to submit the Cliff's Note version. It's unlikely many will wade through all this verbiage.

Guest
reply icon Replying to comment of ramjet

I had no problems reading it. Sadly, I have no advice for them. More and more universial medical care sounds like the answer.

Guest
reply icon Replying to comment of Guest-1155868

Should have voted for Bernie.

Blue Cross And Blue Shield Of Tennessee Reviews

  1. 19 reviews
  2. 1 review
  3. 0 reviews
  4. 0 reviews
  5. 1 review
Blue Cross And Blue Shield Of Tennessee reviews