This is a post I’ve been avoiding but also seems necessary because it has been such a huge part of this process. This is also a post that I am REALLY GLAD that nobody can comment on because opinions run hot, and I don’t feel like having to back-up any of my opinions with facts. ;P
My partner and I have practically made a full-time job out of calling and researching insurance, doctors, hospitals, surgeons, etc.. It’s been about two weeks since my diagnosis, and I don’t even have an oncologist or theoretical treatment plan in place. A big part of it is that my cancer is rare. There are very few doctors and facilities that even offer the guidance I need. And we have yet to find a single one that is covered by my insurance.
There is a hospital in Houston (3hrs away) that would probably provide some of the best care. It’s not covered by my insurance. It would cost me $15,000 just to get initial work-ups, they won’t accept any previous workups, and they won’t even give me an estimate on surgery until AFTER the 15k (solid business plan). Through my research, surgery at that facility would be somewhere around $40-120k. That’s in cash folks. And wouldn’t include any follow-ups or post-surgery treatment. “How dare your insurance not cover it!?” – well guess what, this highly acclaimed university hospital has made the CHOICE not to accept insurance unless it’s through your employer. Bags of cash and gold bars always welcome.
Another viable specialist in Florida, who works outside the box to try to lower costs, also does not take my insurance. They are the cheapest I’ve found but still looking at over $30k. Cash up front, no payment plan. It does not include hospital stay or post-op treatment.
Another viable specialist in Dallas also does not take my insurance.
Also, I think Amazon is doing a black-Friday sale on Thyroidectomy home kits. But of course, you have to be an Amazon Prime member.. ugh.
We haven’t given up hope. In fact, we may just have found a specialist here in Austin (literally received a phone call while writing this post) that accepts my insurance. I still don’t know what all would be covered. But they may be the holy-grail of guidance we have been looking for. Stay tuned.
The ‘best’ insurance I never wanted.
I was railroaded into getting insurance through the marketplace a few years ago. I’m self-employed, make just enough to get by, and I was one of those people (that don’t exist) who’s insurance was dropped because of certain policies. Self-employed plans became too expensive to afford. I was pretty much forced into one of these lovely govt plans. And I have nothing positive to say about my marketplace plan. Ironically, the low cost, high-deductible catastrophe insurance I had previously would have probably covered all of this. I believe in health insurance, not health care coverage. I just wanted to have a plan that would cover me if something really bad happened. Y’know, like cancer…
It all sucks. All of it.
It’s easy to blame a particular insurance company, hospital, doctor, regulation, or politician for the broken system. And yes, even though I hate the term, the system is broken. I’ve had people all but blame my cancer on this president, the last president, and/or the latest Rambo movie (seriously, what!?). And “if we just elected so-and-so, things would be better.” My opinion, please stop. Stop telling people what to do, how they should behave and stop playing the game. We have lost sight of treating each other like humans because so many of us are forced into a system of paperwork, politics, and power-grabs. Doctors and medical professionals are generally kind, loving, people and need to get paid for there work. Just like you need to be paid for yours. It’s all the layers we add between the patient and their caregivers that is wrecking the system.
Every time I’ve received a phone call telling me that my insurance will not cover the treatment, I try to remember that the person on the other end is just a person. I want to scream at them and beat them with a bumper-sticker, but they didn’t make this decision. They are part of a jacked-up system and have no control over who gets what treatment and how much it costs.
What frustrates me the most is that I’m spending 90% of my time navigating this bonanza of BS, instead of resting, healing, and getting treatment.
Next steps: I have an appointment tomorrow with a very promising doctor/specialist here in Austin. This could be a game-changer. Cross all of your fingers.
Meeting with my primary care doctor today for guidance and help with my day-to-day symptoms. I was hoping for surgery in mid-December, but a lack of $$$ will probably deter that. And hopefully, some CT Scans, and Bone Scans soon — because it might be nice to know my odds before I place any more bets. ;P