Health Organization for Pudendal Education

Hi Members,

I am reaching out to speak with anyone who is currently on a marketplace/Obamacare insurance plan through the state in which they live. I will be losing my COBRA insurance benefits (through the plan I had with my old employer) very soon and so I need to choose a plan on the open marketplace. The state in which I live has NO marketplace plans with out-of-network coverage. This is a HUGE issue because for the past 9 years of living with pudendal neuralgia and chronic pain I have had to seek medical treatment from providers who do not take insurance. The only medical professionals who know anything about this condition or treat it have always been out-of-network with all insurance. In the past, I was always able to get some sort of reimbursement by submitting the bills to my insurance b/c of the out-of-network benefits I had with my plan.

I am on and have been on LTD for a few years now due to the chronic debilitating pain which is why I was put on COBRA for my medical insurance. (My LTD plan does not include any long-term medical insurance coverage.) I am single as well so I do not have the benefit of having a partner who has a medical plan that I could tack onto.

As far as I can tell right now there are no doctors, physical therapists, or any providers/practitioners who treat pudendal neuralgia who are in-network with any insurance plan offered through my state. If I want to seek out treatment out-of-state I found out that there is no insurance coverage once I leave my state. This is a NIGHTMARE b/c I have always gone out-of-state for treatment for years as I have not been able to find any successful treatment for myself within my state.

I wanted to know if anyone else is in or has been in a similar situation as I will be very soon and how you are able to handle the expense of basically self-pay for medical treatments? Or if anyone has any other recommendations for me (i.e. loopholes in the system, should I move to a different state which offers plans with out-of-network coverage, etc.)

Thanks,

Buttercup

That's dreadful, Buttercup. I wish I had an answer for you but the only thing I can think of is to move to the state where your most important health care provider is. Is moving even a possibility for you?

Violet

Are you eligible for Medicare, yet? You can get it if you have been disabled for 2 years.

Thanks Violet and NYT.

My providers are all in NYC and I live in NJ. So my thought is do I move to NY? Although they are all out-of-network still anyway, but at least I would have access to some doctors at good NYC hospitals. NYC is very expensive though so I don't think moving there is realistic for me.

I've been on LT disability for over 2 years, but have not been approved for SS disability (denied through every stage and awaiting the results of my hearing). I believe that is the only way to get Medicare correct?

Thanks,

Buttercup

From what I understand you do have to be on Social Security Disability to be able to obtain Medicare. I know there is a two year waiting period once you obtain SSD before you can get Medicare. What I don't know if in a case like yours where you have been fighting for your SSD for a long period of time whether they will take that into consideration and not make it start from when you start receiving SSD benefits.

I'll keep you in my prayers that all goes well at your hearing.

Hi NYT,

Ok thank you very much. I actually already had my hearing a few months ago and have not heard anything back yet on a decision from the judge. (I'm assuming that this is not a good sign since I have heard of people getting approved during their hearings.) If I do end up with an approval I will be forever grateful and if I get denied at this stage I will feel hopeless b/c I don't believe there is anything further I can do. (At least my lawyer said that one is not likely to have a fighting chance if you get denied at the hearing level. There's nothing more to be done.)

Thanks,

Buttercup