Healthcare and Kidney Failure

America is the most generous nation on earth. Of course, we are also the richest nation on earth, so we ought to be.  How about giving until hurts? How about giving something money can't buy--like a kidney?

Over 600,000 Americans suffered from end stage kidney disease in 2008, and the number is rising. Kidneys are the body's toxic waste disposal units--a mission so critical that God gave us two of them. If one fails, the other is there for back-up. If both kidneys fail, the only option is to pipe the blood out of the body through a dialysis machine that does the filtering for them or get a kidney transplant.  More than 50,000 living people have given a kidney to save a life. I am proud to claim one of them in my own extended family.  My niece's brother-in-law has one less kidney and one more brother than he would have had without modern medicine. Thanks to that heroism, my nephew hopes to live as long as any other American.

With only 6,000 living donors each year and 10,000 kidneys from other sources, most end-stage kidney disease patients depend on dialysis. According to official figures reported in the New York Times, in 2008 over 380,000 Americans were receiving dialysis, at a cost of just under $40 billion.

Kidney failure is the only chronic disease that automatically qualifies an individual for Medicare, regardless of age. According to the American Kidney Fund, other Medicare patients can choose to continue their own private insurance as long as they are willing to pay for it, but dialysis patients are limited to 30 months of coverage under an employer-provided plan even if that plan offers better care than Medicare.

It gets worse for transplant patients. The American Kidney Fund reports:

Patients who receive a kidney transplant must take anti-rejection or immunosuppressive drugs for the life of their kidney transplant. However, Medicare will only pay for these drugs--which average $17,000 per year--for the first 36 months after a patient receives their transplant. Patients who are unable to pay for the medications are often forced to discontinue their use, resulting in kidney rejection and a return to Medicare-covered dialysis treatments at an annual cost of nearly $71,000 per patient.

That's rough on my nephew, but now there's Obamacare--or is there? Millions of Americans who were expecting more security and better care have been unsettled by the spectacular failure of HealthCare.gov.  How does the new system work for kidney patients?

It isn't clear.

I visited HealthCare.gov to see whether kidney patients who are currently on Medicare can sign up for private insurance through the new exchanges. The online search tools told me all about Medicare and assured me that the new law would not take away my Medicare but had nothing to say about people who want off Medicare and on to private insurance that can no longer discriminate against people with pre-existing conditions.

So I called the 800 number and got the automated menu as I expected. One push of the "0" button broke me out of my robocall and I quickly got a very pleasant person who looked up the same articles I had been reading as she tried to figure out the answer with me. "Amanda" (not her real name) was able to tell me that it is illegal to sell insurance to somebody who is on Medicare (except for supplemental policies like Medicare Advantage). She figured out that a person who is eligible for Medicare (such as a kidney patient) is not eligible for any of the Obamacare subsidies. She couldn't say whether the system would allow a person who is currently on Medicare to pay their own way for a private plan.

Medicare.gov assures me that Obamacare won't take away my Medicare and offers me free colonoscopies. Their website indirectly alludes to $700 billion in cuts in Medicare through this optimistic paragraph:

The ACA ensures the protection of Medicare for years to come. The life of the Medicare Trust fund will be extended to at least 2029—a 12-year extension due to reductions in waste, fraud and abuse, and Medicare costs, which will provide you with future savings on your premiums and coinsurance.

Medicare's 800 number employs more robots than HealthCare.gov and insists that I type in my Medicare number. I could cheat and use my Mom's number, but that would be wrong. "If you do not have your Medicare number, you may wish to hang up." I hang up.

Searching for "Can Medicare patients choose Obamacare" gives me tons of hits--and they all promise me that I won't lose my Medicare. As far as I can tell, somebody at the very top made it clear that if you like your Medicare, you can keep your Medicare. (With so many people making the same promise, it sounds like this could turn into a post of its own, but that's for another day.)

How about Medicare supplemental insurance? That's usually the right answer for a person who wants more than Medicare. Now things get more troubling. According to "Beth" (not her real name), there are no options for "end of life treatment" for kidney failure in Minnesota. I'm hoping that doesn't mean what I think it means. Perhaps Beth got confused--it's a confusing situation. Fortunately, Beth's doctor in Saint Paul (who is as shocked as I am) is trying to find the answers. 

I hope there's a better answer for kidney patients than I've found yet. If you think I've stumbled onto the famous "death panels" here, you're wrong. Somebody is going to have to reduce the costs of all this care some time, and "death panels" may be the most accurate description of the body that tackles that terrible task, but this is just bureaucracy as usual. There should be a right answer to this question--we just haven't found it yet.

I appeal to readers from all points on the political spectrum to help out Beth. How does a patient with end-stage kidney disease take advantage of the new law? If Obamacare doesn't help them, are there private alternatives that do? Let's put our brains together, people, and make this world a better place!