"I've got two kidneys, and he needs one..."

September 14, 2009 2:44 PM

Polycystic Kidney Disease (PKD) is a genetic disorder affecting 600,000 Americans and 12.5 million people worldwide. Large cysts grow on the kidneys causing urinary problems, elevated blood pressure, and eventually renal failure. Although there is no cure for PKD, patients are generally good candidates for kidney transplants. For patients on Medicare, the transplants are covered, but the needed anti-rejection medication is not after 3 years. The health care bill [pdf] currently in the House contains a provision to change that.

The PKD Foundation is also in the running to receive $50k worth of "co-branded advertisement" through Intel's Vote for a Cause promotion on Facebook.

Surviving PKD is one man's story of living with PKD from diagnosis to transplant.

posted by albrecht (14 comments total)

Seems like a bad idea to tie this into the omnibus healthcare bill. Someone should write and sponsor it as a piece of standalone legislation; with support from patient groups I doubt that anyone in the House or Senate would oppose it, and the cost would be trivial. It's cheap, easy, feel-good legislation; there isn't a Congressperson alive who doesn't eat that sort of thing up.

But attaching it to the healthcare bill risks losing it if the whole bill goes down for other reasons. Maybe it's being done with good intentions by someone who is very confident that the whole bill will go through, but if it's being done with the intention of making the whole healthcare bill a "must pass," it's nothing but hostage politics.
posted by Kadin2048 at 2:54 PM on September 14, 2009

Just a small point of clarification: currently Medicare extends coverage to patients with chronic kidney disease even if they fail to meet age or disability guidelines. It remains, I believe, the only condition for which this is the case. Medicare coverage following kidney transplantation is indeed limited to 36 months but only for those who would otherwise not qualify for Medicare based on age and disability after transplantation. One could envision that almost making decent sense in a world that were unfamiliar with the insurance industry's concept of "pre-existing conditions" and their approach to jacking up premiums.
posted by drpynchon at 3:01 PM on September 14, 2009 [1 favorite]

Good points drpynchon, and of course the reality is that Medicare is usually the only provider these patients can afford, especially if they do the responsible thing and get a genetic test for PKD early in life (an automatic disqualifier for most private insurance). Given the costs of the anti-rejection drugs, they basically have nowhere else to go.
posted by albrecht at 3:09 PM on September 14, 2009

Can someone confirm my hazy memory of why kidney disease is the only condition for which this extension exists? I don't want to say why I think this was passed because it does not at all reflect well on Congress but I can't find any confirmation so I'm wondering if I just made it up in my head.
posted by Justinian at 3:22 PM on September 14, 2009

Thanks for this post, albrecht, as this is a topic that hits close to home for me. PKD killed my maternal grandmother when she was only in her fifties; my dad's sister has it, but was lucky enough that, by the time she reached the point of needing one, the technology for transplants far exceeded the technology that was available to my grandmother.

My aunt has been a model transplant patient in the ensuing years since her surgery, but she is also fortunate to have had really, really wonderful insurance. It's also made her into one of the fiercest advocates for reforming the system. She'll be the first person to tell you how vastly unfair it is that she had her life extended solely because she had access to top-notch care and coverage from the beginnig, but that it was only random life circumstance that made that happen; that thousands of PKD sufferers are in a far worse situation. If she had been born into a different life, it's doubtful she'd be alive today. And that just ain't right.
posted by shiu mai baby at 3:26 PM on September 14, 2009

Dammit. Paternal grandmother, paternal. Dad's mom. Dad's mom and dad's sister both had/have PKD.
posted by shiu mai baby at 3:32 PM on September 14, 2009

Can someone confirm my hazy memory of why kidney disease is the only condition for which this extension exists?

It wasn't very controversial when it was passed; the technology for treating kidney disease (dialysis and transplants) was fairly new but the costs were hugely prohibitive and very few private insurers covered the treatments. The ESRD program was created in the early 1970s, at a time when a lot of politicians thought that universal health care was around the corner (remember, Medicare and Medicaid had both just been passed in 1965, and there was a sense that covering the elderly, disabled, and poor was just the beginning), and I think it was more of a "these people don't have time to wait for us to pass comprehensive reform, they're dying now when treatments are available."

The true costs of the program ended up to be much, much, much higher than projected, but in reality that wasn't really a focus at the time. From what I understand, as the 1970s continued and the prospects of comprehensive health reform dimmed, there was a sense that creating piecemeal disease-by-disease entitlements was a pretty bad way for Congress to operate going forward--even those who supported expanding health care could see how that would end up very inequitable. How do you decide that disease X is worth covering but disease Y is not?
posted by iminurmefi at 4:01 PM on September 14, 2009

This is a complete aside, but I'm having severe cognitive dissonance reading this and not picturing Philip K. Dick whenever I see the abbreviation "PKD." It makes reading this material very strange, and not altogether inappropriate in terms of Dick's writing. I had a "are you sure you're reading what you think you're reading?" moment where I stopped trusting reality for a second there.
posted by SmileyChewtrain at 5:36 PM on September 14, 2009

iminurmefi: Ahh, good. I must have made it up in my head. I thought they added kidney disease mostly because there was a popular senator or congressman who had a kid with kidney disease.
posted by Justinian at 5:41 PM on September 14, 2009

I'm having severe cognitive dissonance reading this and not picturing Philip K. Dick whenever I see the abbreviation "PKD."

Same here? I guess this must be diagnosed "Through a Scanner Darkly"?

Apologies for the gallows humor. With as much horrible medical problems people I know have encountered, it comes to me too easy.
posted by chambers at 6:47 PM on September 14, 2009

Kadin2048, there have been multiple standalone bills trying to do just what you propose, but none of them have gone through - probably because of cost, as noted in the article. Unfortunately, the upfront cost is quite high, and the savings is quite low comparatively - according to this TRIO page (regarding legislation from 1999) it would cost $233 million over six years and save only $29 million over six years.

The cost of immunosuppressive drugs is extremely prohibitive - it can easily come before food, shelter, education... Something this article doesn't mention is that many people have to take two different immunosuppressants, effectively doubling the cost. If you don't have health care, you will likely go into debt and then you'll go bankrupt buying the drugs to keep the transplanted organ functioning. And then you'll lose the organ because you won't be able to feed yourself or pay the rent.

It's a lose-lose situation for everyone involved - the donor, the doctors, and most of all, the patient. Well, I guess it's not technically a losing situation for the drug companies, who are probably making a tidy profit on these kinds of drugs (once the costs for R&D have been paid off; I'm not sure how long that takes).
posted by k8lin at 7:20 PM on September 14, 2009

As I have mentioned elsewhere, I have Alport Syndrome, which is a rare genetic kidney disorder that leads to kidney failure. It is not PKD.

I had my third transplant in May, and I wish I had more time and wakefulness right now to go into more depth on this subject before bed. Here's two things:

Despite how things are supposed to work, I am ineligible for Medicare. Every social worker I've ever had has told me that "once your kidneys fail, you automatically qualify for Medicare." Every Medicare expert I've talked to at Social Security tells me that I need to have 1) a certain number of qualifying work credits, or 2) a parent who is receiving Social Security benefits (so I can piggy-back off of them), or 3) applied before I was 18. This law is written for older people who get sick, and not younger people like me (I was 19 when I had my first transplant, and I'm 32 now).

Transplant meds are quite expensive. k8lin said that "many people have to take two different immunosuppressants," but in my experience, that's a bare minimum. I don't know of any (quality) transplant centers in the US that would use less than two immunosuppressants. For all of my transplants, I have been on a three-drug cocktail, in addition to all the other drugs I take to counteract both the side effects of the immunosuppressants and my disease. I once calculated that 1mg of one of my immunosuppressants cost around $13. My prescription for that drug at the time required me to take (depending on my blood tests) 4-6mg twice a day. That's $104-$156 per day for just one of my meds. I've been fortunate to have decent group insurance through my parents to pay for these drugs when I needed them, but others are not so fortunate.
posted by sleepinglion at 8:02 PM on September 14, 2009

sleepinglion, there are now decent transplant centers that use just one immunosuppressant for solid organ transplants - they won't take you off of multiple drugs if they're working for your current transplant, but they will start you on a new protocol if you get a new organ.

For example, the University of Pittsburgh Medical Center's Starzl Transplantation Institute uses only Prograf (Tacrolimus). They also have an aggressive weaning protocol that actually enables some patients to stop taking immunosuppressive drugs entirely without acute rejection or faster onset of chronic rejection - and all patients are able to go down to a lower dose than they would have without the treatment developed by Thomas Starzl that targets the immune system immediately before the transplant operation is performed (the procedure is detailed more elegantly in the weaning protocol link). They also don't use steroids.
posted by k8lin at 8:41 PM on September 14, 2009

Well, I learned something! A few years ago, I heard that "they" were starting research into this area, but I didn't know anyone was doing it as a matter of course. That's pretty cool. The medical technology has changed and improved in amazing ways since 1996 (when I first started having to pay attention).

Interestingly, Prograf is the $13/mg drug. I wonder about this protocol, though, because I take Prograf mostly to prevent cellular rejection, and Myfortic mostly to prevent antibody-based rejection (which is my primary risk). I wonder how someone like me, who is highly sensitized from multiple transplants, would do on the single drug therapy.

In any event, I think my point still stands for the purpose of the Medicare conversation: multiple-drug immunosuppressive therapy is still the norm in this country, and I think it probably will continue to be for awhile. It takes time for these kinds of things to spread.
posted by sleepinglion at 5:25 AM on September 15, 2009