Polycystic Kidney Disease (PKD) Support Group

Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.

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Since I was diagnosed with PKD when I was 17 years old, I had never been able to get health insurance. As most of you know when you get on dialysis, you will automatically be eligible for Medicare health insurance. However, after a kidney transplant, you only have three years after that transplant when you will no longer be eligible for Medicare. My question is, does any one know what I can do now? I have expensive anti-rejection meds to pay for, and will need some sort of medical coverage. I know many people do not have health insurance coverage, but I just wondered if anyone had any ideas!
Thank you,
Positive attitude



about the best suggestion I can offer is to find a job with good health insurance benefits. group coverage should not discriminate.
under the new health care plan you should be able to get coverage (that is before the Republicans shoot it down) if you live in the USA. I don't know how to go about it but check with your transplant social worker who may have some suggestions.
good luck and let us know what you learn.

You don't need to go applying for individual coverage; you want a large group plan to minimize the costs and maximize the benefits. Since you have Medicare now, you are considered to have credible health care coverage (which is critical; right now you are able to avoid the pre-existing condition clauses because you have credible coverage from Medicare and should be able to smoothly move right into an employer-provided health care plan). Just don't let make that move BEFORE Medicare lapses; you need to find make a smooth move while you're still covered, not after Medicare has lapsed.

If the school system you are in provides health care coverage, apply for that. Find out when their open enrollment period is (probably August) and apply during open enrollment). All you need to do is ask Medicare for a letter of continuing health care coverage; they will provide that to you and you provide that to the new insurance company as proof that you've had continuing coverage these past 3 years.

If you can't wait till the school district has open enrollment and you don't qualify for off-season enrollment, look at a teacher's union. Or your spouse's employer's health plan (not everyone works on a calendar year; my husband's company works on July to June, so their open enrollment is in June, a time period that would be perfect for you!).

Other options are if you belong to any groups: Will you turn 50 before Medicare expires in August/September? Then you may be eligible for group health care coverage through AARP (you only have to be 50 to join! Any other groups you may belong to (school alumni associations, small business associations, are you or your spouse a veteran (there are a plethora of veteran's groups that you can join and get health care coverage through even if you are not eligible for VA care or military medical care).

Also talk with your social worker and find out what your state offers; there may be a reasonable plan for those who are considered "uninsurable" (it varies by state).

In terms of medications in particular, there are a variety of prescription assistance programs you may be eligible for if you don't have health insurance, but hopefully that's not a road you'll have to go down. Again, your social worker (yes, that transplant social worker from years past is the one to talk with...or if you were on dialysis closer to home, that social worker may be able to help you).

Look at all your options (work, organizations, spouse/partner employer, unions, state, etc.). There must be something that you qualify for...because you ARE insured NOW!

The key is do not wait. You only have 63 days after you lose Medicare before that credible coverage period ends and all the pre-existing conditions kick back in, making insurance ridiculously expensive for you again. So get your credible coverage letter from Medicare now, and start looking! You WILL find something you qualify for and the larger the group, the less expensive the costs will be.

Once you find a plan, consider the options within that plan. An HMO is less expensive (you have a PCM and to see a specialist, you must be referred out by your PCM, to include to see a nephrologist), whereas a PPO is more expensive (it's what Medicare is; you can go see the specialists you want/need, with your out of pocket costs based on whether the doctors are in or out of network). Procedures beyond some basics all have to be preapproved in either case and medications will have the same co-pays. Look at the annual deductibles and out of pocket costs and what the premiums are and consider what you can afford to pay. And consider WHEN you can enroll; the sooner the better (you want to enroll BEFORE Medicare expires so there is no chance of losing medical coverage).

Good luck and please let us know how you do. There are others on the board in the same position as you and I'm sure they would love to learn from your experience.

Best wishes,
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