SSD Review - Maintaining Insurance. What was your experience

ibc2009

Hello All,

 I wanted to get some input on what to expect upon my social secuirty disability review that will be coming up in a few months.

 I was dx. with Inflammatory Breast Cancer in March 2009.  I've gone through chemo, bilateral mastectomy, radiation, and ongoing treatment for heart damage as a result of chemo.  Because IBC was on the Social Security list for Compassionate Allowance, I was automatically approved for disability income, with a review of disability set for 3 years. Not to mention I had alot of problems and complications from chemo and had to stop working shortly after treatment began. After two years on disability, you are eligible to get on medicare, so I am currently on medicare.  I'm happy to say that I am still NED after treatment, but struggle with some complications like cardiomyopathy (heart damage from chemo), and frozen shoulder in both shoulders, likely from chemo/and or surgery, and a few other minor things.    My main concern is that I am completely uninsurable if I should lose my disability status. I've mainly been self-employed most of my life and only had insurance thanks to my now ex-husband.  I am concerned about what SSD is likely to do at my review in a few months.  Will I most likely not have disablity renewed because I am NED?  My main concern is keeping insurance coverage.  I certainly cannot purchase insurance anymore, and am really at a loss as to what to expect?  Will I have to try and get a job with a larger company just to get insurance and hope I won't get discriminated against once they find out about my medical history? I hate that I may have to have my choice of employment dictated by health insurance, but I'm not sure what options are out there.

 Wondering if any of you can tell me your experience in dealing with SS Review of disability, or how you have been able to maintain healthcare coverage with a BC diagnosis...and if you've been discriminated for your medical history by employers.  

Also, does anyone know if they do decide to cancel your disability status, how much notice do they give you to find other arrangements?  I'm worried they will say, 30 days and insurance is cancelled??? 

 THANKS ALL! 

Medigal

I have sent so many letters to Washington pertaining to people in your position.  But why are you uninsurable?  Have you called your state's insurance commissioner's office to see how much it would cost you to get on the pre-existing high risk pool?  PCIP, at this time, can't be your answer, imo, because you have to go without insurance 6 months in order to get on it.  I have letters in to Washington about this ridiculous clause which keeps many who need it from buying into it.  No company, I know of, has the right to discriminate against you due to your medical history.  You can call the Disability people in your state or check on the internet for your rights in this matter.  I am going through a nightmare now trying to find a way to keep a relative insured after her COBRA ends. She has been denied twice by Social Security Disability for a different chronic illness and has a lawyer.  Her next step will be the "Hearing" which we hope will give her the good news she needs.  I think many people with chronic illnesses are desperate to get on SSDI just so they can get the Medicare. The best solution would be for Washington to allow yourself and these people to be able to buy into Medicare with a premium even if you are under 65.  But that is tooo simple!

So I hope you will call your state insurance commissioner's office as soon as possible so they can give you some direction as to what your options are.  Best of luck.

Chickadee

Your diagnosis on which you were approved hasn't changed. You have continuing health issues that prevent you from working. You will want those emphasized by your medical team, not your current NED status.



I don't have a crystal ball but dont believe you will have difficulty continuing your coverage under SSDI and Medicare. I also believe that if a denial came in you would have little trouble finding good legal support.

ibc2009

Thank you everyone that took the time to answer.  Very much appreciated!!

ibcmets

Hi ibc2009,

I was diagnosed ibc with bone mets at stage IV a few months after your diagnosis.  I'm going on medicare in Jan.  I've also worried as to what will happen because I may have periods of time where I'm stable, but my diagnosis will not change...I'm still stage IV with bone mets & have had ibc.  It's an assumption on my part that I would remain disabled.  I know I have a high reoccurence rate and not sure when or if this will happen.

You may want to ask your onc what he thinks and what his past experience has been.  Hope you get more feedback.

Terri