Paperwork of Living With Multiple Sclerosis: The Proverbial Weakest Link

Shortly after the dawn of the care facility era Patti’s long term disability benefit medical insurance was suddenly cancelled (without warning or notice) . Not only was it cancelled it was ‘retroactively’ canceled for a period of time ranging from at least 5 years to 13 years. Long story made short, years earlier Patti had been mistakenly completing her annual Coordination of Benefits forms.

The ‘paperwork’ of living with Multiple Sclerosis is the proverbial weakest link. If we did not dot all the i's and cross all the t's, insurers pounced. Here is where the beginning of MS cognitive problems surface and begin to affect treatment and care.

Like most couples we were a team trusting each other to handle our own share. Lesson learned a family member without MS needs to become familiar with health insurance paperwork for IMHO here is where insurers seize the opportunity to exploit those with mild cognitive impairment.

We had heard stories of insurance companies simply dropping MS patients and essentially saying go ahead and file a lawsuit; after all you were late with your payment or did not respond in a timely manner. We can outspend you and outlast your progression.

Suddenly, hundreds of thousands of dollars in medical bills were past due and subject to collection. Consulting with an attorney he commiserated but could not help us without bankrupting us.  Essentially he claimed it was happening more and more as the cost of medical care for chronic illnesses rose. Insurers’ legal team was on the pay roll and had all the time and money to devote to the case. We unfortunately did not. Errors resulting from MS dementia and/or MS cognitive impairment was not an established a defense.

With Patti safely in long term care, my daughter and I faced whatever life bankruptcy left. Simultaneously I had to find and acquire insurance for myself and our teen aged daughter. Beyond the money, health insurance is so interwoven into our lives it was like someone had pulled on the hanging thread that unravels the garment.

Patti was more than complicated because not only is MS is a preexisting condition but Patti’s private medical insurance and pharmacy plan through Long Term Disability (LTD) Benefits from previous employer is absolutely critical for care of Multiple Sclerosis. Many treatments, services, and medications are not available through Medicare.

With her cognitive impairment increasing to a diagnosis of dementia Patti was of no help. Yet conversely, the dementia did reduce her anxiety about the mess especially concerns about insurance for our daughter and myself.

With Patti now safe in the care facility era I used the hours previously needed for home care to launch a one-man, two-thousand hour blitz. Putting my head down I charged ahead, minute by minute, hour by hour, week by week, month by month appealing every letter and or rejection we were sent. Over the year the plot took several twists and turns as it began to straighten out or perhaps snake away. It all depends if you believe in the intrinsic good or evil of the medical insurance industry and corporate America.

Retroactive cancellations were corrected, long term disability insurance though modified was restored, ‘retired’ employee status was reactivated, and medical payments have been repaid.

After over a year of fighting, I’m supposed to believe it all began with “an unexplained computer glitch while files were being centralized…”. No apologies.

Editor's note: We are extremely saddened to say that on November 11, 2013, Patrick Leer passed away. Patrick was an essential member of the community, providing unique insight and perspective as the primary caregiver to his wife, who has MS. His heartful writing continues to reach many. He is deeply missed.

By providing your email address, you are agreeing to our privacy policy. We never sell or share your email address.

More on this topic

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

or create an account to comment.