Paul G’s Story

Paul GilenoLocation: Hartford, Connecticut
Conditions:  Failed Back syndrome, RSD (Reflex Sympathetic Dystrophy), CRPS (Complex regional pain syndrome)
Insurance Company:  Found a private insurance company after problems with Workmen’s Compensation Insurance
Access to care issue: Forced to Fail First several times as a result of his insurance company.

My name is Paul Gileno, and I was diagnosed in 2003 with a failed back syndrome, RSD (Reflex Sympathetic Dystrophy), CRPS (Complex regional pain syndrome), a few back surgeries, and a lot of chronic pain.

How does RA affect your lifestyle?
In the very beginning it totally changed my life and it totally brought my life upside down because I didn’t know how to live with pain I have never had before. Years later it affects my life in the way that it slows me down for what I want to accomplish. I have to plan ahead because I never know how I am going to feel the next day. I need to find a balance because if I do too much my pain gets too high which I never had to do that before.

What doctors do you see? 
I’ve seen orthopedic surgeons, neurosurgeons, pain specialists, anesthesiologists, physiatrists, obviously primary care physicians, physical therapists, psychiatrists. I don’t know if there is a doctor I have not seen. I have seen multiple different doctors over the years for different reasons. There’s an anesthesiologist that I see once a month now. He specializes in chronic pain, RSD and other pain disorders, and I go see him to keep progress of what’s going on with my spine.

What medications do you take? 
I was on Oxycodone and high dosage of morphine; I took Neurontin, Lyrica, Tizanidine, muscle spasm pills, Opana, Prozac, and Xanax. Now I’ve reduced my meds to Percocet and Xanax because my medications were getting to high and I was too young and didn’t want to keep increasing my meds. So I decided to reduce it and basically live with more pain. I know that as I get older it’s going to get worse and I don’t want to have high tolerance to these medications now. So it has been a little bit of a journey.

Tell us about your insurance.
I used to be on the Workmen’s Compensation Insurance because my initial injury was when I was working for business. Through that insurance it was a weekly fight, when the doctor would say one thing and the insurance company would deny and say you have to try this first, or this first, and so on. The main reason why I started the US Pain Foundation is because I had to go through this process myself. Now it’s so hard for me to tell, and nobody could tell for sure if more damage had been done to me because of this ridiculous Fail First system I had to go through. It’s impossible for any doctor to say this, even though it’s pretty clear in my mind that this exactly what happened.

The Workmen’s Compensation Insurance was ended last year. It got too frustrating, and it was easier to close out my case and get a regular private insurance to have a little bit more control over it. For the most part now because I lowered my medications and I am on a basic schedule I don’t have to deal with Step Therapy and multiple rounds of the approval process.

What would you tell your insurance company if you could right now?
It’s not your decision what our treatments are. I understand the business point but at the end of the day you have to let our doctors treat us. We are the patients; we are all different, and each of us need a different treatment that our doctor suggests, and not the treatment insurance companies have come up with to save money. It’s just not fair; it’s not ethical. I think that’s the nicest thing I can say…

What would you say to the legislators and people in power who can change the way insurance companies are treating chronic patients now? 
The legislators can fix this. I also think all they worry about is the money part. They are not blind when it comes to the effects that Fail First has on patients when they make patients fail based on a cost-driven protocol. It all boils down to the economic impact. When I meet with lawmakers, the first thing I am trying to do is to make them understand what is really going on. I am explaining to them that these are your constituents living in your area that are being affected. And then I bring up economic rational explaining long-term effects the Fail First has on the budget.

What would you say to other people fighting the same struggle?
The best advice for people that go through the Fail First process is try not to take it personally. It happened with me. I took it personally and it really upset me. It’s upsetting enough because you can’t get a proper care, but then there’s a whole other level where you take it personally. This is when you think that the insurance companies have it in for you in particular, and that is not really not the case. It’s what they do; this is how they save money. Insurance companies don’t care who we are, they don’t look at our names, they just look at what the protocol is, say, “No” and that’s it. So try to step back and say, “I am going to do the best I can in order to get the treatment that the doctor is suggesting and not what the insurance company is telling me”. Try to be proactive. My personal belief is that insurance companies want to beat people down so they don’t keep trying because they believe that certain people will give up in the process. And plenty people do unfortunately.