Tuesday, August 11, 2009

Bittersweet promotion

Its been a while since I've posted. As a result of venting on this blog, I'm finding things easier to deal with when it comes to HIV related issues so my need to write things out isn't as strong.

There was a comment left on the last post that got me thinking....dealing with the technicalities of HIV medication, doctor appointments, agencies, insurance coverage, finances, etc.

When my husband and I first got married, he had been living on our state's disability income, was given $600 per month since he was diagnosed with a "fatal" disease, and was deemed unable to work. He was also granted our state's medicare, basically given free treatment and medication. It was a great set-up. Not having to worry about employers finding out about his HIV, not dealing with private insurance companies, free medication, and a check to boot!

But, he had to jump through a lot of hoops to access his health care. Had to go to a certain clinic, had limited medication options, and getting an appointment took at least 3 months. There were also many times when the quality of the care was less than ideal. Such as the time we went to a "specialist" doctor who had on gloves, a mask, and wouldn't touch him during the examination. Just looked at him from a few inches away. But...it was all free so he wasn't complaining.

Well, now he's just been offered a full-time position with full benefits. Normally this is a good thing, but we're stressing. What will this mean for us? Will he have to tell his boss and co-workers about the HIV? Will he be denied insurance coverage because of the condition? Will his new doctor be kind and gracious? Will we have to pay for the medication? What about the quality of care from the nurses, laboratories, experts and specialist?

It doesn't seem fair that a person dealing with such a serious illness should be stressing over HAVING ACCESS to quality health care when so many in this world do not. But it is the reality and we have some tough decisions to make ahead. His increase in salary means the state's medical coverage will no longer cover his appointments, medicine, etc. so we will need to make our decision soon. Does he accept the full-time position, or continue part-time? Does he accept the medical insurance and start all over with a new doctor and health care team? (He's been seeing the same doctor at the same facility for fifteen years) What if he's denied coverage? What if his boss (who is a doctor)/co-workers find out? (Did I mention he works at a hospital?)

We've asked a few benefits experts and gotten different story every time.

So...what to do. I don't know.


Anonymous said...

The only thing I can tell you is my husband took a job and no one there knows with the exception of the person that handles the insurance and that is only because it is a government job. Otherwise noone would know.
I've found that by living our lives as any normal couple would, then we become one of the normal couples. Also, I don't know your husband, but I can only imagine how working would improve his outlook on life and just make him feel better. It did mine.

Anonymous said...

Working full time and having access to social and health benefits can be very good. Your husband could ask if the insurance is a collective one (then he does not have to fill up a paper saying that he has the chronic disease or if it is an individual one, then it is different and i cannot answer that. But for the collective one, your spouse do not have to mention about his sickness to his boss or colleagues unless it involves physical possible injuries. The insurance pays between a certain amount or reimboursment (mostly 80%) but your family budget will have to support the rest. Work can be a healthy thing, valorising, and learning new stuff, etc.
Good luck to you all :)

laurel said...

One of the hardest things for me since my husband's health affected his ability to work -- is the domino effect of all the work/money/parenting/medical care decisions.

Four years ago, we were building a house, had two careers, our son started preschool and I was going back to school for my teaching credential. All our plans and decisions were thrown away as he began to get really sick.

A year and a half ago, I had to decide as our son was sent off to grandma's, do I even try to keep my job, a home, or am I moving back in with my parents in my 40's?

We've gone from no insurance, to HMO coverage for the whole family, to paying for crappy insurance, to a mix of work coverage and medicare. My son's changing schools this year due to my husband's health. As I finish my teaching credential, my future job options will also be part of the incredibly complicated medical care/work/parenting situation.

I actually grieve for the past simplicity of my earlier life and am envious of others' less complicated responsibilities. Sometimes I just want to scream! but feel like there is no one to hear.