For people with rare and chronic illnesses, finding a physician knowledgeable about their condition can be extremely challenging. Some people are lucky enough to score one of those doctors that are perfect in every way. Not only are they knowledgeable about the condition, they have a great bedside manner, listen to you, care about your quality of life, have a variety of options available to them and are able to think outside the box when necessary.
I was lucky enough to have a doctor like that just 45 minutes from my home for four years. He was absolutely amazing and treated by Complex Regional Pain Syndrome and comorbid conditions aggressively. He also had the capability to do very important treatments called ketamine infusions to help reduce my excruciating pain. I would go from a 10+ to a 3-4 on the pain scale in a matter of days. It was amazing and because it was in-network and in-state, my insurance covered it without issues. However, when the pain management clinic was closed due to low funding, myself and other patients, many who are my friends, were forced to find a new doctor to do the therapy.
The problem has been that insurance won’t cover it out of state and paying out of pocket to go to the next state over would be about $25000 a round and to travel halfway across the country, it would be $5000 minimum for the treatment, add the flights, hotel for two weeks plus, food, rental car for that time and more. Easily $10000-$12000 A ROUND completely out of pocket and 3-4 rounds would be required each year.
Only adding to this problem is the fact that I can count one hand the number of doctors that do the infusions in my home state of Pennsylvania, and the waiting list to see these doctors for the treatment is 2 to 3 years. That is a long time when you are in excruciating pain 24/7. Not only does insurance not want to cover the treatment, the ketamine infusions are not easily accessible without a bit of traveling for many people.
This situation is not unique to me or just patients with CRPS. This happens across the board all over the world with many, many rare and chronic illnesses. Unfortunately, a treatment like this is something the insurance company won’t budge on. It’s my last option for treatment. It’s the last option for many of the friends I’ve met through this journey, and somewhere around the world, there is someone who is on their last hope of getting treatment, insurance is denying it, and paying out of pocket too expensive.
We shouldn’t have to fight hard to find a doctor willing to take on our complex cases. We shouldn’t have to fight tooth and nail for a diagnosis over a period of years. When we find that doctor and get that diagnosis, it should not have to be a fight with the insurance company to get what we need. And yet, we do. Some of it is the inherent lack of knowledge of uncommon conditions, which is understandable because no one knows everything, but the part that can more easily be controlled is insurance.
So why then, does my quality of life and survival and that of other patients depend on whether insurance approves or denies? I don’t need to be “normal”. Heck, what is “normal” these days other than a setting on the dryer? Myself and many other people simply want to be functional and productive members of society. Every day, we try our best to function as much as possible, but our bodies are working against us every step of the way. After five years of being a “spoonie”, I’ve realized that for the majority of my conditions, a cure is realistically a fair ways off. This means we just need to do the best with that we have, take it minute by minute, hour by hour, day by day, and do what we can in terms of treatments. It would be exceedingly helpful for insurance companies to understand what our specialists see and rather than fighting with each other, working together for the benefit of the patient.