To the Insurance Companies Who Will Decide Whether or Not to Cover My Treatment

There are many factors that contribute to a patient’s inability to access appropriate treatment for their condition. Oftentimes, lack of insurance, being under-insured, location, or the inability to meet copays or co-insurance create significant barriers. Workman’s Comp and Veteran’s Affairs often present challenges to those bounden to those systems. Restrictive plan limits further obstruct  physician recommendations and often leave patients reeling, struggling to cover the gaps in coverage.

I have to admit, until recently, compared to many who have complex regional pain syndrome (CRPS) or reflex sympathetic dystrophy, I have been extremely fortunate to be able to almost always access the medication and treatment my physician has recommended. Sympathetic nerve blocks, epidurals, spinal cord stimulation implants, physical therapy, hospitalizations, in-patient continuos epidural infusions, PICC lines and medications have always been covered without a fight. Referrals to additional specialists, always approved.

Managing CRPS and the associated severe pain and challenges that come along with this diagnosis is a job within itself. I did not have to expend additional energy fighting my insurance companies, or finding providers who could treat the complexity of my case.

Newer treatments such as ketamine infusions or IVIG therapy still remain unattainable for me due to the lack of knowledgable or willing providers in my immediate region. Insurance constrains and the associated expense of traveling to access these therapies, remain a barrier in my situation.

Fortunately though, I was never left without options. That is, until now.

Back in 2012, eight years into my CRPS diagnosis, my physician, always willing to think outside the box, suggested I try a continuous epidural infusion. At the time, CRPS had spread into my right arm, and now I was affected bi-laterally. Unable to access a systemic treatment like ketamine, epi-infusions offered a way to treat multiple areas at one time. It would require a hospital stay of five days, and a catheter to be inserted directly into my spine, but as most with CRPS would agree, I was willing to try anything.

To my absolute shock, I experienced incredible pain relief, reduction in swelling, stiffness, and overall improvement in function. While hospitalized, my pain score went from a seven to eight down to a one to two. Nothing until then had created such marked improvement. I was discharged with minimal pain in the treated areas, and was incredibly hopeful for the future. Over the next four months, my pain remained at lower than normal levels. My primary and secondary insurance covered all my costs, and I was able to meet my co-insurance. I was elated!

After four months I had reached a level of pain which required intervention again, so I was re-admitted for another five-day continuous epi-infusion. On the second day, my doctor came into my room to deliver some bad news. Despite my results again being successful, the hospital and my insurance decided that I needed to be discharged. Although there was a consensus that my case warranted the treatment, the need to be in the hospital for five days proved troublesome for reimbursement, as I simply wasn’t “sick enough” to be hospitalized that long. My doctor was able to somehow keep me in for the remainder of my treatment, however it would be the last time I would be able to access it.

For the next year, finding a way to access this life-changing treatment ensued. During this time I would have to revert back to undergoing series after series of sympathetic nerve blocks, an inferior treatment comparatively in my case. My insurance said they would cover the infusions at home, using a portable pump — something used often in the hospice care setting. Despite living in a large metropolitan area, and contacting over 50 home health and nursing agencies, no one was willing to manage or had the specially qualified nurses required for my case.

Heartbroken and left feeling completely dejected, I finally resigned to the fact that unfair as I felt it to be, I still was able to access other treatments, many which my fellow CRPS warriors fight everyday for.

I am now facing new challenges accessing even my long standing treatment regimen.

What I’m about to explain may not be positive or inspirational, but it’s real.

After over 12 years of battling CRPS, trying to always live my best life despite the intense pain and loss of function, at times I feel like I’m finally reaching my breaking point.

When I was diagnosed at age 23, I was still in the midst of starting my adult life and creating what my future would be. I had many experiences left to have and was very hopeful. But living with a rare, unrecognized disease wears you down. Life itself is challenging. Now imagine throwing CRPS or any other chronic illness into the mix, along with the need to fight for treatment.

If I could speak directly to those with the insurance companies, workman’s comp, the VA, hospitals and other facilities, who make the decisions whether or not to cover treatment, I would say this:

While I don’t agree, I understand that first and foremost you are running a business. Like all businesses, the goal is to be profitable. For-profit healthcare is the sad reality in this country, and it is a system in which physicians and patients have no choice but to try to navigate.

I want you to understand though, from a patient perspective what your profit driven decisions are doing to people like me.

You are destroying our hope. When you live with a serious chronic illness, you must operate under the continual belief that things could possibly improve in the future. When your denial of care creates conditions so unbearable, it is difficult to trust that improvement is ever possible.

You rob us of our dignity. Without recommended medications and treatments, many of us lose the ability to work, finish our education, care for our families, or pursue our passions.

You create unnecessary stress, pain and suffering, both emotional and physical, impacting the desire and will to live. When we are robbed of basic hope and our dignity stripped, pain and suffering increases exponentially. Tragically, some chronically ill patients chose to end their life.

I sincerely wish one day you will fully grasp the consequences of denying, delaying, or otherwise obstructing access to medications and treatments.