Black woman with short, natural hair reads over a document at her desk.

October through December is Open Enrollment season for the US Health Insurance system. This is the time when people can choose, change, or adjust their healthcare plan.

With about 55% of the population covered through private employers, this is when employees have the right to examine their options and select the offered plan that best fits their needs.

For the roughly 18% of the population on Medicare, it’s time to choose whether to use Original Medicare or one of the Medicare Advantage programs – and to decide what medication coverage they want if they use original Medicare.

For the 18% of the population that is on Medicaid, this is usually when they can select which Medicaid HMO they will use, if their state no longer provides original Medicaid coverage.

It’s also a time when some people need to choose which option is their personal better fit- especially people who are becoming Medicare-eligible for the first time.

Choosing the right health insurance plan is often incredibly difficult, with a large percentage of people often choosing plans that aren’t actually their best option.

This post is using the prompts provided by Sheryl Chan of A Chronic Voice—and I’m grateful for her creating this excellent link party!

This month’s words are: falling, choosing, transitioning, and imagining.

Falling for the myth of health insurance

Purchasing a health insurance plan is always a good idea, but unfortunately, too many health insurance companies don’t have your best interest at heart. While from our perspective as customers, the point of health insurance is to protect our health, or provide us affordable care if something goes wrong, the insurance companies view things differently.

Here in the US, where health insurance coverage is a commodity to purchase, rather than a recognized human right, most insurance companies have a simple goal when it comes to insuring the chronically ill and disabled: don’t do it.

white woman with short brown hair wearing a blue hospital gown.  The wall behind her is gray with a white vine motif on it.
Unfortunately, health insurance coverage is similar to a hospital gown. It looks solid on the front, but the back end doesn’t do as implied.

We want to believe that we are covered and protected by our healthcare plans, and for people without underlying health issues, it often appears to be the case.

For those of us who use health insurance the most, though, we know the reality behind the facade.

Health insurance companies do what they can to make their services challenging to access, difficult to maintain, and can work against our best interests when it comes to being provided the care we most need.

From restrictive formularies and preferred medications to pre-approvals and limiting options, insurance companies often tie the hands of our doctors, limit our care options, or put extra red tape between us and the treatments that will most help us.

Want some examples?

  • My neurologist was trying various medications to help manage my migraines. At the time they weren’t very frequent, so we were exploring the triptans to see if we could find one that would work for me. My insurance refused to pay for some of them unless my neurologist tried certain other ones first, and proved that they didn’t help. Then, and only then, would they cover the one my neurologist wanted to prescribe.
  • Medicare is one of the more conservative insurance companies when it comes to treatment options. Therefore, almost no alternative medicine options are covered, even those proven effective. I cannot get massage therapy, acupuncture, hypnotherapy, or similar options covered at all, and newer treatment options are also often unavailable.
  • The migraine treatment I am currently using is relatively expensive. While it is covered by my insurance(it took a lot of research to find a plan that did), it’s only covered with pre-authorization, meaning that my neurologist needed to fill out additional paperwork justifying the expense and why I couldn’t use a less expensive medication. I’m using the new CGRP inhibitors and my doctor has needed to file for preapproval whenever any change occurs, including increasing the dosage of the same medication. The need for preapprovals has extended my waits for the next round multiple times, and has been an additional hurdle to jump to get treated.
  • My partner has autoimmune pernicious anemia, and so has multiple blood tests that he needs done on a regular basis. His insurance plans haven’t always been great about covering all of his necessary testing and his doctors sometimes need to write justifications for prescribing the bloodwork he needs done.
  • Multiple TV shows and movies(like Breaking Bad and John Q.) have been created with the base premise of: unexpected health expenses EVEN WITH INSURANCE made living financially untenable. While some aspects of these features are unrealistic, the idea of health insurance companies failing to provide adequate coverage is very real.
  • 66.5% of bankruptcies are tied to medical issues. Most affordable health insurance plans simply don’t provide enough coverage – and people generally don’t realize that until after they need the insurance.

I’m very aware that my personal examples are mild compared to other people’s horror stories about their fights with insurance. For me, the cases have predominantly made stressful times more stressful, but I know for other people their insurance company’s decisions can have life-or-death consequences.

Choosing your health insurance when you are disabled

The process of choosing your health insurance is an unnecessarily complicated one. While many people only have a couple of options, for others, they have access to many different plans, sometimes from multiple providers. People often have a hard time selecting plans, and often rely on experts(or even just the options at the top of the list of possibilities), for their selection.

Because we all have different needs, though, it’s actually vital that we take some time to carefully examine our options and choose the plan that best fits our needs.

With disabilities and chronic conditions, we know better than most how very expensive treatment can be.

This means we understand the importance of finding the better plan options for ourselves, and the value of good health insurance.

wheelchair user with short permed hair signs in at a doctor's appointment.  The receptionist is visible on the other side of the window.
Those of us with disabilities have more experience with medical care and health insurance than most abled people.

For myself, I’m on Medicare, which is one of the largest networks of covered doctors in the country. I only really need to think about my medication plan each year, but that itself can take some effort.

My big change was last year, when I decided to try the CGRP inhibitors I mentioned earlier. That choice alone shifted me from a prescription plan that cost $30/month to one that cost $100/month. The bright side was that the CGRP inhibitors I wanted to try went from costing $315/month to $40/month, making my total costs for the medication much lower.

With the more expensive coverage, I was able to get the Nurtec for only $21 for six – an absolute bargain, considering that the retail cost is well over $1,0000.

Since then, I’ve been experimenting with the various injectables, trying to find the right prescription and dosage.  Paying $70 more per month sounds like a lot, but adding on the cost of the new medications makes it absolutely worth it. 

This year, now that I’ve found a specific inhibitor that seems to be working, I just need to focus on coverage for that. I may keep the plan I have, but I’m going to run my prescriptions through the system and double-check if there’s a plan that handles my new medication mix more affordably.

We understand the need for good coverage better, but the bigger challenge often is picking the plan that actually is better for meeting our needs!

If you are concerned about your plan and coverage options, I highly encourage you to attend my talk on November 11: Choosing the right health insurance plan for you!

I also have a post on plan selection.

My most basic advice is twofold: look for plans that give you more options(ability to go out of network and ideally no need for referrals), and plans where the supports that you have in place(such as medications you take and doctors/hospitals/providers you know, like, and trust) are covered.

If you were pretty happy with your coverage last year, then it doesn’t hurt to double-check your options.

If you weren’t though, this is the time to reexamine your options and try to find a plan that better fits your needs.

Transitioning to a new plan

When you change plans, there will be a transition period for you. 

Depending on the changes you make, these transitions can be easier or more difficult, helpful or destructive. 

My goal in both offering coaching and in my free webinars is to help you choose a plan that transitions you to a healthier place. 

Depending on where you were last year, that may mean helping you shift to a plan that gives you more and better options or shifting to a plan that covers the doctors, medications, and providers that you’ve already found helpful and want to keep or afford.  

Transitions and change aren’t always easy and they do mean more mental and emotional work. 

female wheelchair user wrapped in a yellow towel sits on a shower bench next to her wheelchair
Transitions aren’t easy – but there are always tools to make the transition easier!

However, if they lead to greater health and/or symptom management, confirmation of diagnosis, or improved treatment options, then they’re likely well worth the extra effort.  

I had a constant headache for close to 2 years, and it was finally relieved this past January(albeit temporarily) when I tried Nurtec, one of the new CGRP inhibitors.  Not having a headache after so long with one felt a bit surreal, but absolutely blissful!  

Changing my drug plan shifted the medication from unaffordable to manageable, and that gave me hope for managing my migraine. 

I haven’t been completely headache-free most of the time, but I’ve had many headache-free days, and my general headache has tended to be in the 1-2 category instead of the 4 or so. 

If you change plans, you may need to find new doctors, try new medications, or visit new hospitals.

I want you to know just what changes choosing your new plan will cause, so that you can be prepared, and so that most(if not all) of your surprises will be pleasant ones.

 Imagining a life with a quality health insurance plan

All too often, better health insurance plans are also the more expensive ones upfront. High premium, lower deductible, and (hopefully) more options, with your preferred doctors in-network.

I’ve been on Medicare for 17 years now, and for the most part, I’m happy with it. I have a relatively low premium, and a relatively low deductible and one of the biggest networks of doctors out there.

It isn’t perfect(As I mentioned, it would be nice if they were more open-minded about alternative medicines), but I’m feeling relatively well-cared for and have most of my medical needs covered.

When I compare it to my partner’s current healthcare plan(provided by a small business), it’s much better, and I’ve personally used Medicaid and found that much more limiting.

It’s also better in many ways than the insurance I got through my mother when I was first diagnosed with Functional Neurological Disorder(FND).

Three Black and disabled folx laugh uproariously while strolling down a sidewalk on a windy day. On the left, a non-binary person walks with a cane in one hand and a tangle stim toy in the other. In the middle, a non-binary person rolls along in their power wheelchair. On the right, a femme walks with fabulously windswept hair. A street parking meter is in the background on the right.
The idea of having health insurance coverage that isn’t a headache is a joyful one!

I remember that their mental healthcare plan was a reimbursement plan, so I had to pay out of pocket for my therapy sessions, then mail in my receipts to my insurance company. It took a few months for the reimbursement checks to come.

That lag time on a limited budget left me really worried about having enough money in my bank account to keep that particular financial circle going.

For those of us with chronic disabling conditions, it’s vital to have insurance coverage that actually works for us.

We deserve and need to be able to see the doctors we need to, afford the necessary treatments to manage our symptoms, including affordable medications.

We need to be able to get the testing our doctors recommend and multiple treatment options with guidance from medical professionals about why one might be better than the other.

We also shouldn’t be losing hours of our lives trying to appeal decisions, get preapprovals, and other headaches that insurance limitations have forced on us.

We deserve dignity and affordable options.

These can be hard to find with health insurance, which is why I want to help guide your way – so you can be one of the lucky ones who has health insurance that actually works for you!

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