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DEADLY Serious Communication Problems In The US Health Care System

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Most of us would rather stick needles in our eyes than contact a government health insurance call center. Each agent has a different level of knowledge and experience, so resolving our problem depends on who happens to answer our call that day. Some agents are helpful, some try to be helpful, but unknowingly provide inaccurate information and some, who would rather be anywhere else on earth rather than a Medicare call center, just want to get off the phone as soon as possible.

For those living with a long-term disability that leaves them dependent on the government healthcare system, an inaccurate or incomplete answer can have dangerous consequences, as it did for my friend, Jack Tetreau.

Jack Tetreau’s Story

Jack did not understand why in April 2014, he began to experience balance issues and weakness in his left leg. He even fell down several times at work. He assumed the problem stemmed from an old football injury and wrapped his knee with an ace bandage. Then, the same pain and weakness started in his right leg.

One night, Jack tried to walk to the bathroom, but could not move his legs. He literally had to crawl there. The next day, Jack went to a walk-in care center thinking that a cortisone shot might help. The doctor on duty recognized that something was very wrong and told him to see a neurologist immediately.

That same day, a neurologist examined him and he was diagnosed with Guillain-Barré Syndrome (GBS), an inflammatory disorder of the peripheral nerves. She sent Jack directly to the hospital. Over the next five days, for nine hours each day, he received Intravenous Immune Globulins (IVIG) treatments and learned to walk again.

These treatments were continued monthly for three consecutive days and ultimately changed to twice a month for two consecutive days, until they stopped abruptly on December 31, 2017, when Jack unexpectedly lost his health care coverage.

Note: In January 2015, Jack’s diagnosis changed to Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), which is a more severe and quite rare nerve disorder.

What is CIDP?

CIDP is “caused by damage to the covering of the nerves, called myelin.” It is a rare disease; only 1-2 people per 100,000 are diagnosed annually. “CIDP is characterized by gradually increasing sensory loss and weakness associated with loss of reflexes:

The body’s immune system perceives myelin as foreign and attacks it. Myelin wraps around the nerve axon (the long, wire-like part of a nerve cell) much like insulation around an electrical wire. The nerves extend from the spinal cord to the rest of the body, stimulating muscle contraction and transmitting sensory information back to the nervous system from receptors in the skin and joints. This insulation (myelin) allows electrical impulses to efficiently travel along the nerve axon. When myelin is damaged or removed, these electrical impulses are slowed or lost, and messages transmitted from the brain are disrupted and may never make it to their final destination. What causes this process is not yet clear.

Early symptoms of the disease include “loss of sensation (numbness), abnormal sensation (tingling and pain), loss of reflexes, and weakness (difficulty walking, foot drop).” As the disease progresses, it becomes painful.

Because a diagnosis of CIDP is so rare, much of the treatment is experimental. However, most patients receive high dose IVIG. “The drug is injected through a vein over the course of several hours.”  

Jack had been receiving IVIG treatments every two weeks. Each treatment consisted of two four-hour IVIG sessions over two days. The frequency of his treatments was at the higher end of the CIDP patient spectrum.

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The cost per treatment is $23,000.

On the fourth or fifth day post-treatment, Jack’s symptoms would subside, allowing him five days of relief before gradually returning as the IVIG left his system.

Jack’s life revolved around these two-week cycles for over three years, until the treatments came to an abrupt end on December 31, 2017.

Health Insurance History

Jack went on disability in 2015 and was required to apply for private insurance. He chose Connecticare, and with disability credits, his total monthly premium was $66.

Each December, Connecticare requires insured individuals to apply for renewed coverage, which had been practically automatic until December 2017.

In November 2016, Jack received a postcard from Social Security stating that he was eligible for Medicare. It offered Medicare Part A, (hospitalization coverage) for free, and Medicare Part B, for a premium that was several times greater than the amount of his current monthly premium to Connecticare. The postcard warned that if an individual declined this offer, they would lose their low price policy under Connecticare. So, Jack accepted Part A and declined Part B.

The important information that was left out explained that by accepting Medicare, he would lose his the Social Security disability credits that brought his Connecticare premium down to $66.

When Jack called to renew his Connecticare policy in December 2017, over a year later, as he has done each December, he was quoted an unaffordable $2,500 per month. 

The Treatments Have Stopped 

Through a series of misunderstandings and instructions that the agents are all very sorry he never received, Jack remains uninsured. Hours spent on the phone to the Social Security and Medicare call centers have been unproductive. One agent contradicts the next.

Most recently, he spoke to a woman who seemed knowledgeable. On July 1st, he will be enrolled in Medicare B and D. However, he needs a Medicaid policy to supplement the high costs of IVIG treatments (that Medicare does not cover).

In order to apply for Medicaid, he must show that he was declined for “Husky C” insurance. Government regulations, she explained, require Jack to prove that he was denied “Husky C” coverage in order to proceed with his application to Medicaid.

He cannot, however, apply to Medicaid until June 1st (open enrollment period) and it will likely take 45 days to be approved. Requests to expedite the application prompt the agents to read the regulations to you.

Where To Go From Here 

Needless to say, Jack’s health has been deteriorating since he has not had an IVIG treatment for four months and will not have one until his Medicaid application is approved.

Once his “Husky C” application has been received and declined, it will be time for a full court press. Given that he has received so much incorrect information from countless call center agents, he will ask them to expedite the application. If they will not, he may not receive another treatment until August.

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Lessons Learned From This Unfortunate Experience 

Take the time to learn the ins and outs of Medicare. Some important facts to be aware of are discussed in this Huffington Post article.

  1. For all non-routine issues, ask to speak to a claims representative. The people who answer the phones at the call centers:

“are called “service representatives.” They’re trained to answer basic questions on Social Security and Medicare, and to handle transactions such as status changes. The people who actually process claims are called “claims representatives,” and they’re more likely to be trained on the technical details of the more complex issues.”

If he had spoken to a claims representative from the beginning, Jack would have been told that he had no choice in the matter.

After two years on disability, a patient is required by law to switch into Medicare and is no longer eligible to receive the very significant credits toward private insurance that, in Jack’s case, had been Connecticare. By declining Medicare B, his only health coverage was Medicare A, which covers hospitalization. No one provided this information. If they had, he would have accepted Medicare B and would have avoided a six-month period without IVIG treatments.

Never assume anything to be true when dealing with a Medicare agent. Verify everything by making a second phone call, unpleasant as that thought may be.

  1. More information — and even one-on-one enrollment assistance — is available from your State Health Insurance Assistance Program (SHIP), a federally funded, free counseling service. This sounds like a good place to start.
  1. Those who work in the billing department of your neurologist’s office or the hospital have knowledge of the ins and out of Medicare.
  1. There is a forum where CIDP patients talk among themselves about how their IVIG treatments are covered. Everyone in the forum has some combination of Medicare and their treatments are covered 100%.

I would bet a similar online forum is available for every disease.

  1. One can hire a consultant or a patient advocate for help in navigating the health care system. 65Incorporated.com offers this service. They charge a fee of $299 for an initial individual consultation or $499 for a couple. But if the initial consultation is $299, one has to wonder what the final bill might be after the consultant spends time making phone calls on a person’s behalf.

Due to cost, this would be a last resort.

  1. The AARP is a good source of information about Medicare.
  1. Do not procrastinate. Knowing we need to deal with both a health insurance issue and the government, gives most us a tremendous need to do almost anything else. It’s the kind of thing that we pick up and think about for a nanosecond, then toss back into our “to do” file. Better to make that call tomorrow or next week.

Instead, deal with it immediately. Deal with it thoroughly. Left unattended to, it could become a matter of insurance or no insurance, as it did for Jack. And that could become a matter of life or death.

Article posted with permission from Freedom Outpost. Article by Elizabeth Vaughn.

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