Insurance...ugh.

As everyone knows, dealing with insurance companies isn’t easy. But when you have MS or another chronic illness, it can be downright challenging.

MS is an expensive disease. The treatment of MS typically includes prescription drugs and various forms of rehabilitation, such as physical therapy, speech therapy, and the use of mobility aids. A study published in May 2013 in the Journal of Medical Economics found that the total cost of healthcare for MS ranged from about $8,500 to more than $50,000 per year during the period studied (1999 to 2008).

I am lucky enough to work in a job that offers benefits or ‘job-based coverage’ so I have the option of paying my insurance directly out of my paycheck. It’s not cheap but I’m covered. Simple enough, right? I have insurance through United Healthcare (UHC) so I will get what I need. Well…

In 2014, I fell and started relying on my scooter more and more until I wasn’t walking at all because it was unsafe. The scooter is not meant for living in so it was time for a power wheelchair. I can’t walk anymore ergo get a wheelchair. After going through the hoops insurance requires, my first attempt at acquiring a wheelchair was denied. We had asked for more than insurance allowed. The wheelchair company (Numotion) wasn’t any help. Neither was UHC. My husband volleyed between Numotion and UHC and got what we needed. Because he persevered, I had a wheelchair in six months. Believe me, all other repairs and improvements have been a struggle as well.

I have also had to fight UHC on medications that were not deemed medically necessary or where the pre-authorization was no longer good. What do I have to prove?

I am terrified of what will happen if my wheelchair dies. Or if I am ever caught without my medication. What happens when you are disabled and your insurance falls through? If you have insurance and your insurance just flunks out for a bit, well, you’re left hanging, hoping, and relying on them to get it right. Eventually. I never thought that an insurance company would be the one to determine the quality of my life.

This system is not good enough.  Until it is fixed, you will need to be a strong, persistent advocate to obtain the help that is needed.

Caregiver as case-worker article at The Mighty

What’s New for MS

Research on MS continues to advance. Researchers are making headway in virtually every priority funding category identified by the National MS Society: stopping MS, restoring what’s been lost, and ending the disease forever. Researchers are closer to understanding what causes MS and how to effectively treat and prevent MS than ever before.

Here is a video on recent developments from MSWorld.org:  Overview of 2016 MS Research.

For a broader view of the history of understanding MS, the National MS Society provides an interesting document entitled “Critical Milestones for MS” here: Timeline of Progress in MS Research.

FINALLY there are a number of studies taking a look at the relationship between diet and MS. If I never hear "Have you tried ...? Or my friend only eats ___ and feels great!" it'll be too soon. But if there is actual research then that's a different story. Right now there is not enough evidence to recommend one diet over another. However, most of the diets agree on the same food items that should be cut out. Foods to avoid are those that:

·         Are highly processed

·         Have a high glycemic index (GI)

·         Are high in saturated fat

In general, the diets tend to recommend eating less fatty red meat and more fruits and vegetables. Keep an eye out for the results of these studies. The National MS Society reviewed various dies here: NMSS Diet and Multiple Sclerosis.

Here’s to a happy and healthy new year!