Kristine has seen health insurance from her own perspective, and from that of a spouse. Kristine’s wife, Candace, has myasthenia gravis which requires them to utilize their insurance often. Leveraging her experience, Kristine talks about fighting insurance and whether its been worth it.
I started with little understanding
I can honestly say that I didn’t know anything about medical insurance before I met my wife, Candace. And I’m pretty sure I still don’t know anything – maybe just enough to get by. All I knew was that I paid my monthly premiums (taken out of my paycheck) and I had some coverage with a copay for doctor’s visits and prescriptions. I didn’t go to the doctor very much because I was in overall good health, so I didn’t have a ton of out-of-pocket expenses. For me, it was simple.
Getting an intense education on insurance
Candace’s medical coverage is a whole different story. She has gone through a lot to get the coverage she has today. She has had to prove her diagnosis and symptoms more than once, and has had to start all over again on several occasions. She is constantly fighting insurance just to get the treatments she needs. She is often repeating labs and test that she has already done. Even with me on her side advocating for her, the process is painfully slow.
She has known people who have died in the middle of the drawn-out approval processes of their life-saving treatments. She has also known some who died after having been denied repeatedly.
When the system doesn’t work
At one point, my wife and I and her medical team were talking about a Stem Cell transplant for her. We were told she needed this transplant as a life-saving treatment because she had basically come to a dead end with other treatments. Candace’s insurance policy wouldn’t cover any of it. It didn’t matter what any doctor said, there was no way around it. Both the doctor and we spent a long time fighting insurance on that – but to no avail.
We were back to square one.
We’re still here, stuck at square one, and we don’t know where to go from here.
The reality of being sick
When it comes to my wife and her medical needs, the first question that comes up is, “Will insurance cover that?” It’s sad but true. She has reached out to doctors numerous times to get them to send justification to her insurance so they could cover what she needs. And we all know how “quickly” doctor’s offices move. They don’t. But the processes in place just take a long time, even at best. Doctors don’t have the time to practice medicine AND jump through all the hoops insurance puts up.
What if we had no insurance at all?
My wife and I live with the fear that she could lose her medical benefits at any time. One test out-of-range or one misdiagnosis from a specialist is enough to hit the brakes on her coverage. It’s not a great feeling; it’s like waiting for a disaster you know is coming.
But if Candace lost her medical benefits, I would have to choose between being her caregiver and finding a way to support us financially. Her coverage is the only way I am able to stay home with her and go with her to all of her appointments. If she lost her benefits, I would have to find a job FAST, most likely at home, because I still wouldn’t want to leave her home alone if I didn’t have to. If I couldn’t find a job that I could do from home, I would have to find a night job or a swing-shift job so I could still go to appointments with her and be a mom at the same time. Oh, and maybe be able to get some sleep somewhere in between all of that.
I’ve been there, done that. I used to work a full-time job. It was scary being away from her, and my job was an hour away from our house. If an emergency came up, I couldn’t be there as fast as I needed to. I would have to take time off of work to go to appointments with her, and I was always stressed and tired. I don’t want to have to do that again.
The value of having insurance
I never realized how important medical benefits were before I met my wife. There are a lot of uninsured people in this country because insurance is so expensive. In other countries, they make it a priority to make sure that there is a good healthcare system in place for its citizens. People in the U.S. get caught up in the political and financial part of health insurance, which is unfortunate. It’s like there is no way to fix it.
Fortunately, I provide vision and dental benefits for both of us, through private policies. Her insurance policy doesn’t cover vision (completely) and she gets no dental coverage. Thankfully our current policies offer decent coverage with reasonable out-of-pocket expenses.
Insurance is there in those emergency situations where Candace needs immediate care. For that, I’m glad its in place. It almost makes the rest of the grief worth it.
A Broken system
So many claims get denied because they cost too much for the company. They hide behind excuses like “it’s not medically necessary” or “it’s experimental”. What is the point of paying as much as we do for insurance if everything is just going to get denied and out-of-pocket costs keep going up? Every step requires going to battle, so much that you spend a disproportionate amount of your life, not living it ,but fighting insurance. It just doesn’t make any sense.
Kristine Hutchinson is a full-time caregiver for her wife Candace. Candace has many life-threatening auto immune diseases including: Myasthenia Gravis, Lupus, Stiff Person’s Syndrome, Mast Cell Activation Syndrome (MCAS), and Hereditary Angioedema (HAE). She also deals with issues with her autonomic system (blood pressure, heart rate). Kristine lives with her wife Candace and her two stepchildren Raevyn and Ben in Eaton, Colorado. Kristine is also a Navy Veteran, and did 4 years of service. After the military, she got a bachelor’s degree in Business Management. Presently, Kristine offers writing services in her spare time and has started a blog sharing things from a caregiver’s perspective.
From the Editor:
Patients Rising exists to help patients find a way through issues of access and affordability and to empower them with the tools they need to succeed in healthcare. It’s not easy. But if you become a member , or if you feel ready to become an advocate, you can help us by asking questions and telling us what you need.