[Lily80]

I've heard that it can be difficult to be able to stay/or get new coverage on some types of health insurance once you get a lupus diagnosis. I'm just curious for those of you in the US...which health and life insurance companies have you had luck with, etc.? Have there been any of you that haven't had problems?

I'm just curious as it was mentioned by my doctor again the other day that while he thinks lupus is a possibility with me, that at 28 he wouldn't want to give a diagnosis like that because of the health/life insurance issues that I would run into.....but heck, I'd rather have a diagnosis & treatment and maybe get better than stay sick but still have health insurance. Basically, if he definitely thought I had lupus he would diagnosis it, i guess, but since my case is kind of not definite, then he's going to stay away from entertaining that diagnosis. He's one of my doctors, so I'm still trying to get a diagnosis...just don't want anybody to think I'm going to depend on him to make the diagnosis.

 

[lazylegs]

Hi Lily,

Insurance can be a problem with Lupus. People have been dropped from their policies. Once you loose your insurance you may not be able to get another policy. If you do the premiums will be extremely expensive. Due to all the doctor visits, medication costs, testing and possible hospitalization you do not want to be without insurance if you can help it.

My first rheumy did not initially enter a Lupus diagnosis for the same reason. Fortunately I have always been on my husband's policy through work so I have not had a problem.

Take care,
Lazylegs

 

[momof2boys]

Hi Lily- I have a life insurance through my employer, however I was looking into purchasing as additional plan for myself and my husband. I applied at several companies, most denied me without even asking me for my medical records. I did get a policy after sending my records. I'll be glad to tell you (or anyone else) which company it is.

Delana

 

[peonyprincess]

I personally have two different policies and have had them since I was young. My parents saw to it that we kids had coverage just in case. Turned out that was one of the best things that could have been done as now I cannot get any kind of life coverage because of my Lupus diagnosis. A friend of mine has MS and she was able to purchase a life policy but I am not sure of where she bought hers thru or even if the company or sales rep was above board. Seems anyone that I have spoke with that has serious health problems cannot purchase any.


Good luck,
Nancy

 

[KarolH]

I have had life insurance for years so this is just something I pay on monthly with my husband. I also have a policy that I have carried since the age of 18 years old.

I am insured through my husbands health care benefits but I must say that MY doctor is not quick to put LUPUS down on paper in black and white due to the insurance reason.

MCTD sounds better and does allow us to get insurance, or so he told me anyway.

 

[neongirl]

I was cut from the life insurance policy my husband had for us from his work after my DX. The health insurance we have through his company then tried to do a "recision" on everyone, not just me, who had a chronic illness. Basically, if they could find any way to make the case that a person was even vaguely aware that there might be something wrong with them healthwise before they were insured by this company, then the company could immediately drop them from coverage. When that didn't work, they demanded that my husband and I prove that we were legally married by giving them a copy of our marriage license, which was not as easy as it sounds; we were married in Tennessee, and the county we were married in no longer had the records, so we had to go through the state and hope we got the copy from the state in time to beat the deadline set by the insurance company. The insurance company then decided it needed copies of our childrens' birth certificates as well, even though those were already on file with them previously. I have been unable to obtain life insurance since I was cut from the policy through my husbands employer. In short, I don't think it is just Lupus the insurance companies are looking to avoid, they went after diabetics and heart patients etc. with equall vengeance.

 

[flowershopgirl]

Medical / Life Insurance

I lost my job last fall after exhausting FMLA. Retained my health insurance thru COBRA, though pay thru the roof for it. My life insurance was portable & I've elected to continue it as well. Have separate policy my husband took out about 10 yrs prior to my diagnosis, so pray that I can maintain both policies.

Even though I am relieved to have my health insurance thru COBRA, I'm appalled that they denied the treatment my doctor is recommending. I'm scheduled for Rituxan this week, as all other treatments have failed. Have been diagnosed for 2 yrs. Rituxan is my last chance at getting better other than a stem-cell transplant. Have severe CNS Lupus and Antiphospholipid Syndrome.

I feel caught between a rock and a hard place. I'm getting sicker each day, and Rituxan is the one lifeline my docs are trying to save me with.

 

[Maia]

What I've heard/read is that life insurance and health insurance is usually only possible through employment - you or your spouse - once you have a SLE diagnosis. Unless you already had a policy which states they cannot cancel... In the USA this is almost always the case.

For the issue regarding diagnosis official or not, it is absolutely possible and likely preferable to be officially diagnosed with UCTD because you can get the same treatment options for that disorder as you can with lupus and avoid the insurance hassles for the most part. If the testing or symptoms eventually definitively point to lupus, then you may have to get the SLE diagnosis so it's best to get things in order now if at all possible. Many doctors will wait to do an official diagnosis for that very reason, and this does not make them any less "quality" a physician for choosing this approach.