Tuesday, 10 October 2017

When Chronic Pain Treatment Becomes Dependent On The Insurance Companies, Only One Side Wins!

Today's post from themighty.com (see link below) looks at a problem that increasing numbers of neuropathy patients are facing, as insurance companies and state health authorities tighten their belts and make it tougher to claim rightful benefits without any thought for the patient's situation. On the one hand, doctors are correctly concluding that a multi-therapy approach is the most successful in treating severe nerve pain patients but they're thwarted at every turn because patients simply can't afford the specialist services they need and cynical insurance companies are excluding them or raising the premiums so that people can't pay for them. Little wonder that doctors revert to the tried, tested and unsuccessful approach of prescribing one drug treatment at a time, in the knowledge that they're at least covered in the insurance plan. This applies to treatment but also to social security payments that are cut or withdrawn just because the chronic pain patient cannot work. It's a situation that's not going to get better any time soon. Everything is about money and as budgets are tightened, it's the patient who suffers. As the article concludes; the best we can do is make the best of what we have and hope for sympathetic doctors and insurance policies. It's all well and good (and it is good) that medical science is concluding that patients should follow a personalised plan of pain treatment, involving several therapies but if the patient can't pay for them, then the best of intentions become meaningless in this cynical world.

When Your Insurance Won't Cover the Treatments You Need
Meghan Bayer
September 26, 2017

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 my complex regional pain syndrome (CRPS) 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 over a 10 to a three or four 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 $25,000 a round. And, to travel halfway across the country, it would be $5,000 minimum for the treatment, add the flights, hotel for two weeks plus, food, rental car for that time and more. This easily hits $10,000 to $12,000 a round – completely out of pocket… and three to four 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 two to three 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 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.

Related Stories
I Thought My Chronic Illness Was My Greatest Weakness, But I Was Wrong
How My Service Dog Helps Me Live With Chronic Pain

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.

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Meghan Bayer


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