Friday, June 26, 2009

American Medical Insurance and Me

It is so ridiculous how medical groups they do NOT want to provide treatment. They will go to massive lengths to delay and deny care. I bet they spend unconscionable amounts of money denying care. Meanwhile, they keep charging me every paycheck for providing me with “health coverage,” and they deny and decline providing me care. Why is that an OK practice in the U.S.? To charge me money to tell me they don’t want to provide me with care?

I have been trying to get a referral to a rheumatologist to tell me whether I have Ehlers Danlos Syndrome since September 2008. I am finally sent to a rheumatologist on 6/11/2008. She says that I DO have EDS Type 3, and to find out if I have Type 4, I need to get a Dexa Bone Density Scan. She sends me to ask my Primary Doctor for the scan.

On 6/12, I go in to my Primary Doctor’s office and ask him for a referral for a Dexa Bone Density Scan. He puts one in.

One week later (6/19), I call the doctor’s office and ask where the results are. “No response yet, we’re still waiting.”

I tell them it has been a week, and they said with HMO it takes 2 weeks.

I call the insurance company, who tells me the approval should take 3-5 business days. The insurance company calls the medical group, who tells them that the doctor’s office did not send the referral request until 6/18. When I called the doctor’s office to ask why they waited before sending it, they tell me they sent it on 6/12. Someone is lying, and I don’t know who. I have no choice but to wait.

On 6/26, I call back and ask what the status is. The medical group tells me that they faxed my Primary Doctor on 6/23 to ask for more information. I called my doctor and they tell me they never got a fax. Either someone is lying, or something bad happened to that fax, but it all adds up to me not getting medical care. So, what can I do next?

My doctor’s office tells me to call the medical group, who tells me they need information from my doctor’s office. I call my insurance company who tells me they will call my medical group for me, and keeps putting me on and off hold for 30 minutes, after which they hang up on me!

I call my doctor’s office back and they tell me to come in to the office. I do not know why they cannot talk to me on the phone, but I go in to the office.

I sit in the lobby for 30 minutes, and then sit in the doctor’s waiting room. I see two doctors and they both tell me that asking for a Dexa Bone Scan on someone who is only 39 years old is unusual, so the medical group wants more information before they do this. Therefore, my primary doctor tells me to call the specialist and have her fax confirmation to the medical group that I have EDS, so that they can feel confident to go ahead and approve my referral to get the bone density scan.

The whole system is ridiculous.

Here is why it’s important: The Dexa Bone Density Scan is to help determine if I have EDS Type 3 or Type 4. If I have Type 3, it means I will live a painful life of the normal length. EDS Type 4, however, has an expected life span of 40 years. The problem is, I just turned 39 about 3 weeks ago. Therefore, my expected life span from here is less than one year, give or take. Sure, I can be surprising and live to 41, 43, or 45, but that is not expected. Or rather, it is as expected to die early as it is to die late. Anyhow, I would like to KNOW whether I have Type 3 or Type 4. It is tough going to bed every night not knowing.

2 comments:

Anonymous said...

Hi I am so sorry you are having to wait for dexa scan. I have ehlers danlos hypermobility type and live in uk so fortunately had a dexa scan for free. I see world renowned specialist Professor Rodney Grahame at University College Hospital as does my daughter who has inherited the condition from me. I have poor bone density so take alendronic acid once a week and supplements daily. I thought that only way to find out if one has EDS vascular type was via a skin bioposy not via the dexa scan, so perhaps things are different in US. I hope you get the funding soon. Take care from a fellow bendy in the UK.

Sean Arenas said...

The syndrome is definitely treated differently in Europe compared to the US. I think the reason they chose these tests is for cost savings. Apparently the genetic workup is very expensive, and she's concerned about my multiple fractures so figures we'll learn more from the Dexa. As you stated, you have poor bone density, and that's one of the symptoms of the vascular type.

Fortunately, my bone density came back as normal, and my abdominal ultrasound came back as normal. I'm still getting an aortic aneurism ultrasound to make sure, but if I don't have that I think I can just focus on the aches and pains, and not on whether not I'll live.