Renal Support Network: We Need Your Help To Get Health Plans Right

[okarol]

RSN needs your help to make sure the affordable care act gets the individual health plans right.

Renal Support Network (RSN) is concerned that Individual health plans offered throughout the country through the new health care marketplaces (also known as exchanges) may not have specific language that ensures that dialysis and transplant recipients have access to all treatment modalities, no waiting periods for pre-existing conditions and reasonable co-pays.
 
Since each state offers many plans, we want to review the language to see if they are missing any key elements as it pertains to CKD. If you or any of your friends/family has enrolled in the Affordable Health Care plan, we ask that you share a copy of the policy with RSN so we can review the benefits listed.
 
Please find contact information on our website. If you would like to email us a copy send it to info@rsnhope.org.

 
Please share this request with friends, family and colleagues. Thank you.

[kporter85db]

Since most of us who might be affected by the ACA are on Medicare because of our ESRD we will not be using the marketplace. Or am I totally wrong about this?

[nursey66]

Yes, you are correct. If you are on Medicare, you do not have to deal with the Health Exchanges.  Right now, I am thinking that's a good thing !! But, not everyone with ESRD is on Medicare. My hubby was on his own ins.from work,as well as on my ins. from work for quite awhile before he had to get on Medicare, so I'm sure there are people out there that will be affected. Hopefully the plans will work for them. Thanks for putting out this request.Hopefully someone will respond with some experience with the new ACA Plans.People with ESRD have enough to worry about !!!

[Zach]

I think one issue might be when a person with a kidney transplant reaches the three-year mark and is dropped by Medicare (unless they're 65 or older).
Will the ACA plans pay for the immunosuppressive and other drugs necessary to keep the transplant healthy?

[KarenInWA]

I have insurance through my job and do not have to go through the ACA health exchange. The only ones who do are ones who do not have access to group policies through their jobs, or through their spouse's jobs. I currently have Medicare secondary until later in 2014, which will then be discontinued in November when I reach my 3 years post-tx date, unless of course my tx fails and I end up back on dialyis. I am not looking forward to having to juggle the whole Job-insurance-going-from-primary-to-secondary/Medicare-going-from-secondary-to-primary only to drop a few months later and Job insurance is back to being my only game. I will have to plan accordingly for that merry-go-round. Add to that the expired contract negotiations my union is currently going through, and the fact that my job insurance will most likely change, and 2014 should be lots of fun for me! It may just drive me to drink!

KarenInWA

[kporter85db]

I think one issue might be when a person with a kidney transplant reaches the three-year mark and is dropped by Medicare (unless they're 65 or older).
Will the ACA plans pay for the immunosuppressive and other drugs necessary to keep the transplant healthy?

Zach, this is exactly the thing that has been holding me back from pursuing a transplant and I would love to know the answer to your question.

[MooseMom]

I think one issue might be when a person with a kidney transplant reaches the three-year mark and is dropped by Medicare (unless they're 65 or older).
Will the ACA plans pay for the immunosuppressive and other drugs necessary to keep the transplant healthy?

This may go some way toward answering that question.

http://dialysispatients.org/patients-voice/has-aca-expanded-medicares-immunosuppressive-drug-coverage-kidney-transplant-recipients

[Bill Peckham]

And yet the NKF and the other KCP affiliated groups continue to pursue coverage for drugs only under Medicare, how is that a good idea? Who is the person who is going to be living with a transplant but not willing or able to carry health insurance but is qualified and can afford a Medicare Part B Premium for their drugs and who would then be able to self pay to be followed by a doctor to prescribe the drugs and then self pay for the lab tests and all the rest? Who falls into that category?

[JaeCie]

I think the basic thing about this mess is that it should have never happened. ESRD patients are the only ones forced onto Medicare EVEN if they have private medical insurance. I am left with over 150,000 in medical costs because I work full-time and always have and they expect you to somehow be able to pay for private insurance and Medicare. It makes no sense. My personal preference is that they treat us same as anyone else. If you work, you have private insurance and they should pay for it. If you don't work, then Medicare should be an OPTION so you get the medical care you need. If you work now; however, it is no longer an option for your employer to give you a credit in your paycheck to opt out of private insurance. You now have to pay for both until such time as Medicare is no longer your primary insurance post-transplant. This is one reason so many people with transplants end up back on dialysis. They cannot afford to pay for the post-transplant treatments and so we can continue to hate dialysis and die. So much for my rant . . . :-)

[Bill Peckham]

I am left with over 150,000 in medical costs because I work full-time and always have and they expect you to somehow be able to pay for private insurance and Medicare.

 


I don't understand the 150,000 number. Can you give more detail?

[JaeCie]

Transplant non-hospital/bed charges, rejection episodes and treatment, biopsies, labs . . .standard stuff

[Bill Peckham]

Transplant non-hospital/bed charges, rejection episodes and treatment, biopsies, labs . . .standard stuff

Sorry I just don't understand. Medicare pays 80% and sets the rate of reimbursement, your private employer insurance should be picking most of the uncovered 20%, what wasn't covered?

[JaeCie]

It's a long story but the short version is that I opted out of Part B initially becaus I work full time and can't afford to pay for two insurances. Now, I am being forced to because Medicare remains primary for another year and a half. Will probably have to sell the house or something since I don't qualify for any assistance. The joys of being chronically/terminally ill . . .