Sjogren's Syndrome and Insurance

My recent post entitled Will My Daughters Inherit My Autoimmune Disease? elicited this comment by C. yesterday. I thought it was a great question. Here it is:

Just found your blog, and am so grateful!
I have tested positive for Sjogren's, my mom has it, and now my daughter (in her early 20's) is showing symptoms.Here's my question...should she be tested? I know this sounds like a ridiculous question, but my concern is her health insurance. She's still young, I don't know if health reform will take place if the current admin loses the WH... .She's currently on our health ins. but she'll lose that at 26 (TY Obama for the extension to 26!) I'm worried she won't be able to get a new policy if she's diagnosed with a long-term chronic illness, particularly as she's already diagnosed with celiac. I'm told that realistically, when my COBRA expires soon I won't be eligible to purchase insurance because I have pre-existing conditions.
Would be glad to hear yr advice. - C.

C., this is not a ridiculous question at all. Health insurance issues are so difficult, to put it mildly.

It sounds to me as though C. has two questions: Should she push to get a diagnosis for her daughter now, or after she has an insurance plan of her own? AND, Where can C. find health insurance for herself after her COBRA expires?

In answering the first question regarding the daughter being diagnosed, here's my opinion, and remember that this is only my opinion. This would be a great question to discuss with your doctor as well.  If your daughter already has SIGNIFICANT symptoms of autoimmune disease in her twenties, she should seek a diagnosis. If she comes up negative, then at least for the present, she wouldn't have to worry about adding Sjogren's syndrome to her pre existing condition list. If she DOES test positive, then she should be treated. Early intervention in Sjogren's syndrome is important, especially if your daughter plans on having a family at some point since extra supervision during a pregnancy would be necessary. Also, since Sjogren's syndrome is a progressive disease, early intervention may help slow that progression from the start. The stretch from "early twenties" to age twenty six is several years, which would be a long time for un-checked autoantibodies to do damage.

As for the insurance question, (and this applies to US citizens):

First -- Don't assume that these conditions would be uninsurable without checking around. I made a call to my insurance program and was told that it could be possible to insure a young woman with celiac disease but also was advised that without a great deal more information, the representative couldn't give me an exact answer, which of course was understandable.

If you are disabled due to your diseases, have worked and contributed social security taxes, and are receiving disability SSDI, you are automatically eligible for Medicare part A. You can purchase Medicare part B to supplement A and the cost is usually much more affordable than a stand alone policy. You can read more about Medicare here.

If you don't qualify for Medicare, and can't find an insurance policy that would cover your pre-existing condition or is too expensive for you to afford, there is another option:

The Affordable Care Act  provides options for affordable health insurance for many who would otherwise be unable to be insured -- including those with a pre-existing condition. It was initiated in March of 2010, and you can read more about it here, and here, and specifically for pre-existing conditions, here. You can apply online, or by telephone at 1-866-717-5826: (TTY: 1-866-561-1604).

IMPORTANT: You can only enroll in the Pre-Existing Condition Insurance Plan by applying for coverage using the methods described on their web page. Do not respond to phony calls or letters asking you to enroll for a fee.

The criteria for qualifying for these plans vary from state to state and of course, by each individual's situation. Here's a video describing the application process:

Readers? Any other thoughts or suggestions?

*addition to post*: Reader Wendy pointed out an important insurance option for United States citizens that I SHOULD have included: SSI, which is a government program that provides assistance to disabled adults and children who have limited income and resources. These members may be eligible for the federal/state program Medicaid, which provides health care coverage. You can read more about Medicaid here and here.

Thanks, Wendy.