The Biggest Barriers to Treatment When You Have a Rare and Chronic Illness


When someone first develops unexplained symptoms and they go to the doctor, they have a battery of tests to find the problem. What happens when all of the tests come back normal and the doctor says you are fine, but deep down you know you aren’t? You will probably start going to doctor after doctor, then specialist after specialist, until you finally have a diagnosis.

After being told what you have is rare and chronic, the search for a treatment begins. All the typical medications and therapies do not work, so then you and your doctor have to think outside the box. Thinking outside the box of typical treatments brings you to the world of experimental treatments, but most insurance companies do not cover these.

This is what brings you to the two biggest barriers in having a rare and chronic illness: money and insurance.

When insurance doesn’t cover experimental treatments or they decide it is not medically necessary, you are forced to either look for something else or pay for it out of pocket. Most people do not have thousands of dollars sitting around just waiting to be spent. Many of these patients and their families end up in medical debt just so they can live a normal life. Parents may spend more than they have because they hate seeing their child hurting and will do anything they can to help
them. The patients may spend money they are unable to earn because their illness deprives them of parts of everyday living such as working.

If I were in charge of insurance companies, I would leave the treatment decision up to the doctor. The doctor knows their patient best, they know patients with the same illness, they know what works, and they know what doesn’t work. Why should an insurance company get to decide what’s best for a person they have never met in their life? Only the doctor knows what is and is not medically necessary. No person should ever have to worry about medical bills and no one should ever have to go into medical debt. What is even worse is when the insurance company covers a treatment once. but they don’t cover it the second time which leaves you in $50,000 in medical debt at 19 years old. That should never happen, but unfortunately, it is all too common today.

Maybe someday people will not have to worry about their insurance not covering a treatment because it is experimental or not medically necessary. We know our bodies best and we know what we need. Even if it is experimental, if it works, it should be covered, especially when it has been successful for years. It may be the only treatment that gives someone their life back and have a sense of normalcy.


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