It comes down to money right?
How much can a Spondy spend in a year on medical bills? Well that’s a loaded question! Are we talking those that seek treatment of those that attempt to deal with it the best they can away from white coats?
My average annual medical bills total $10,000. I’ve had years much higher than this and some less. It depends on the various issues that come along in a year. Here is a rundown of where a lot of my money goes. Medication; I’ve been on 244 pills a week all with their own copays. Infusions/TNF’s; they are also medications but at a whole other level because they are infusions that require a medical staff in a doctor’s office to administer. So tack on several zero’s there! All the doctor visits lead to multiple copays and it’s not as if we can see only one doctor. This is a full systemic disease after all so we must see different doctors from different specialties. Yet so many insurance companies still require us to see our primary care physician first so there’s a frivolous expense. Urgent care is the first place I hit to avoid emergency room fees but they often don’t know enough to treat and send me on to the emergency room anyways (oh but they still charge me for their time). Adding to the cost is time off work. X-Rays and MRI’s….well let’s just say that I’m shocked I’m not glowing by now. All these different machines scan for different things and there are baselines the doctors use to keep an eye on disease progression and with each new injury they must determine the extent so there is another round.
I usually fulfill my deductible by April each year and reaching my max out of pocket limit is right on its heels. Oh and maxing you’re out of pocket does not mean you don’t have to pay copays so those keep going. You see the theme here? Time off Work + cost of care = one broke Spondy. For my family it’s hard to decide at times whether to pay to get treatment or just take the pain and spend the money in other places where it’s needed. It’s a horrible decision to have to make but at least I have the option to make it some are not so fortunate.
If more doctors communicated with each other maybe we could cut down on the run around. If more doctors were educated on Ankylosing Spondylitis they wouldn’t be scared or unable to treat us. More awareness about Ankylosing Spondylitis would help these issues, and understanding would make it easier on those who are hurting to tolerate the challenges of AS each day.
What to do when the funds are not enough to cover the cost of care?
For so many (like me) the funds are just no longer there for all of these treatments. I’m taking my one little NSAID and seizure meds only going into the doc when they force me in order to keep my refills. I find alternative ways to deal with the pain the best I can even if that means getting in the shower and cranking up the music so no one can hear me “voice my frustrations”. I know there are places that will help those that need it and I’m hoping to find some for you. So let’s explore some options that don’t involve screaming in a shower.
Here’s a link to medication assistance programs.
This site has a wealth of links to financial assistance programs through the government.
Another long list of financial assistance programs offered by various organizations.
There are so many more local options that it would be hard to list them all. Check your county’s website and the YMCA. They can usually help you find a lot of local assistance. Also talk to your pharmacist about programs through the pharmacy, they have been very helpful for me! Your doctor see’s several patients in similar situations talk to them. They’ll have some resources for you as well. Anyone wanting more help just let me know. I’d be happy to help out in any way I can.
I hope we find a cure! Even a treatment that works for everyone! Even a treatment that everyone can afford! Even a treatment that is not loaded full of risks that can out way the benefits. I HOPE!
Links to Love-
http://healthcarebluebook.com/page_Default.aspx -prices on procedures in your area
http://www.healthcare.gov/using-insurance/understanding/index.html -help understanding insurance
http://www.goodrx.com/ -prices on your prescription meds in your area.