Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Treatment Without Medical Insurance

Are there any members here that have been diagnosed with AS but find getting proper care an issue because of lack of medical coverage?

Hello, CentraoGal:

I suppose I had the exact opposite experience: Always had great coverage, so tried letting physicians manage my care, but MAJOR regrets with that approach.

When I was on my own, on a pay-go basis, I decided that I had to actually get something for my money and became my own advocate. Now doctors do what I tell them or they are fired and I have fired MANY; the average rheumatologist cannot do very much for us, I regret--and long-term healthwise I would have been much better off staying well away from doctors altogether!

They did not make us sick in the first place, but they can keep us there and even make us much worse; few can do what Thomas Edison suggested--"The doctor of the future will prescribe no medicine...etc."

HEALTH,
John

When I was younger, I had no insurance. I had to save to go to the doctor and each and every times I went, I was blown off. No tests were ever run and no care was ever shown.

When I was in my 30s I finally had insurance (but, by then I had been trained by doctors to avoid doctors because they wouldn't help). One time I complained about my hip really hurting and the gp said it was "just" arthritis no recommendations and no help.

I wasn't diagnosed until I was 46-after the military which trains you to shut up if you are in pain. Silly that as I had been trained by life to do that And an army doctor told me flat out that I didn't have any spondylitis. My SI joints are fused and were at the time he told me that.

I now have insurance and have been using it to document EVERYTHING that doctors in the past refused to address.
That is why I now have a diagnosis.

So, in answer to your question: YES and NO. No because I was never diagnosed with anything when I had no insurance. Yes because no one would run any tests or try to treat me because I had no insurance.

Pezami & John - I was first diagnosed in the late 80s (or early 90s - can't remember) but after the 1st diagnosis and being referred to an renown expert of AS in Atlanta (who confirmed the diagnosis), I was freaked out and refused to go back. I know I tried a number of medicines on the market and by the time I got to the AS Specialist, I had no other alternatives.

Although I continued to have issues, the PCPs on my plan changed and so did I. Over the course of the years, I was told I didn't have it and thus, would not be treated as someone that did. I have found out over the last week or so that MANY with AS have reported the same symptoms that I had reported over the years that were dismissed as anything but AS.

I look back on CScans and MRI and right there, it says Spondylitis - it couldn't be any more plain. What I have found is that with today's HC system, even the PCIP program ran out of funds so I can't turn to that as a insurance alternative. I have been turned down by 8 companies and even had doctors tell me they don't take on patients without insurance. I finally stooped to the bottom (so I thought) and sought treatment with the Community Health System. There I found a doctor that was familiar with it and full of compassion (since prior doctors had told me that the pain would go away so take ibuprofen).

I'm not a proponent of the Obamacare Health Care plan but it's going to happen. I just fear we will not be afforded the right healthcare....TBD

Hi, CentralGAGal:



I don't fear this--I KNOW it absolutely! The white stick brigade takes over and there is no way to get proper care for AS!

In fact I'm leaving the US. Right now in Philippines, where I can buy my own healthcare and manage it myself. More important than gun ownership to me--

But as Art Laffer said recently about the California government--supporting them by paying more taxes is like feeding rats in Your basement. In the case of the FEDS, the rats have taken over the whole house. I'm a deserter; too old to fight.

Blessings,
John

I have insurance that does not cover non-generic drugs. So, that's a problem with biologics. However, I was approved by the Encourage Foundation and currently get my Enbrel for free. I'm switching over to Simponi and it looks likes Johnson & Johnson has a similar program as Encourage for Enbrel. Because the biologics have no generics are so expensive, there seems to be a lot of assistance for people with undercoverage or no coverage.

As for doctor's visits, etc. My plan only covers two visits a year and no procedures not done in a hospital. That is difficult, as I have found going to rheumatologist expensive. But I am not willing just to go my own way and have some hope doctors can still help.

David I guess I need to ask if you feel the Enbrel works for you?

I have been on pain medicine for several years but also Diclofenac. I had been on the Meloxicam for several years before that and nothing seen to work (including at least 10 different ones before that).

I just went out and printed the form for the Encourage Foundation as I would qualify as well. I've seen a number of people comment they are on it so IF it's working for other AS patients, maybe I should suggest it to my doctor.

Enbrel helped me at first, but for some reason after about 3 months, I started to get worse. I have more symptoms now than I had previously, though for the most part the pain is not severe.

Long story short, my doctor recently decided it was time to give a different biologic a try. But a lot of people love Enbrel and swear by it. And who knows? My pain might be a lot worse without it.

There is a process you have to go through to be approved by Encourage. Of course, first your doctor has to prescribe the medicine. Then you have to enroll with Enbrel Support. They are able to give you a couple of months worth of free Enbrel while they pre-qualify you for Encourage. They then refer you to Encourage and I believe Encourage contacts you.

It isn't as bad as it sounds and the process moves fairly quickly. Once you get a subscription to Enbrel, you should be able to sign up for Enbrel Support right away, which is a good resource even after you are already with Encourage.

(Of course you could just try to apply to Encourage directly, since you got their application. Just sharing the process I had to go through).

I have a Doctor's appointment next week so I've filled in the application that I will give him (in the event he thinks it's worth a try). AstraZenaca has a very similar program that I have been on for Nexium so I'm sure it's pretty comparable.

Another thing that has been prescribed are the Lidoderm patches. They have definitely helped the pain in my shoulder/arm during sleep but having only a few samples previously, the appear to be more effective at night.