AAKP's Hill day in Washington D.C.

[cschwab]

I got the following email about AAKP's Hill Day on June 11th - I asked to go, but didn't make the cut.



But I thought this could potentially be a very important event, so I've been sending my 2 cents worth on what I thought ought to be brought up!

I was thinking others might like to do the same:

contact: Jerome Bailey, AAKP
jbailey@aakp.org

[cschwab]

(The following posts are what I've been sending Mr. Bailey)

Jerome,

Even though I wasn't chosen for the congressional visit, it was great to hear you have more than enough people willing to go!

I hope you don't mind if I give my 2 cents worth on what I was hoping will be addressed.  I've watched the goings-on in kidney dialysis for about 12 years now and have some strong opinions on what ought to change.

The appalling sky-high mortality rate is the bottom-line that has kept me from turning away all these 12 years.  Our mortality rate vs. a country like Italy sums it up for me:
US vs Italy graph:  http://dialysisethics2.org/open_images/mortality.jpg

How best to address this?  From about day one until now I've heard longer, slower dialysis would cut significantly into our mortality rate.  This has been from some very reliable sources, I've seen other articles that say otherwise - but the sources seemed less than reputable.

Here are few quotes:
"In Japan and Germany, one of the pay for performance targets for dialysis is that 85% of dialyzors must be getting at least 4 hours of treatment 3x/week (this would translate to 2 hours x 6 days a week). I think that would be an excellent goal worth working toward here, particularly in light of the DOPPS (Dialysis Outcomes & Practice Patterns Study) data among 22,000 or so dialyzors that found a 30% drop in the risk of death for folks who got at LEAST 4 hours of treatment. IMHO, there is no excuse for anyone to be getting less than this, regardless of body size. It is not possible to get too much dialysis (though it is possible to remove too much water and leave people feeling wretched--this is actually quite common)."  http://forums.homedialysis.org/showthread.php/2667-Dialysis-Industry-May-Expand-as-Study-Sways-Medicare"

Dr. Belding Scibner, inventor of the Scribner Shunt:
"Short hemodialysis sessions have great appeal only to the uninformed dialysis patient and to for-profit dialysis centers"
http://www.therenalnetwork.org/qi/resources/HDP.pdf

Dr. Carl Kjellstrand, recipient of a Lifetime Achievement award in Hemodialysis:
"Homeostasis cannot be maintained with short, fast dialysis. Just as speed on the road kills, so it does in hemodialysis."
http://www.dialysisethics2.org/index.php/Our-Concerns/dr-carl-kjellstrand.html

Drs. Christopher Blagg, former director of Northwest Kidney Centers and Dr. Carl Kjellstrand:
"The mortality in U.S. patients has increased from 10 to 25% over the last three decades, but has remained stable at around 10% in Japan.

[cschwab]

To continue about the need for longer dialysis, you will hear things like "we can't afford it" - bull.  Propublica already pointed out what Italy is spending and the results they are getting in the mortality graph I sent: http://dialysisethics2.org/open_images/mortality.jpg.  I think it would also be helpful to take a look at this graph on costs and deaths: http://dialysisethics2.org/open_images/Costs%20and%20deaths.jpg

Excuses for the high mortality I've heard have been things like "our sick people are sicker than their sick people" - Dr. Blagg addressed this below.  I've also heard "our population isn't homogeneous".  Fact is the Caucasian population has a higher morality than the Afro-American population and other minorities: http://www.nature.com/ki/journal/v58/n3/full/4495489a.html, I've also seen the stats supporting this in usrds.org.

As a general rule of thumb, I can tell you how those who oppose better dialysis counter what you bring in:
1) Patients who have been the victim of poor dialysis: "Oh, those just disgruntled patients - or are exceptions to the fine treatment we provide".
2) Statements and articles from some very reputable sources: countered by their own studies done by shall I say politely say good company people, or the reputable people are just "eggheads who are out there".
3) If you bring in just stats, well, I'll refer you to what Mark Twain and others had to say about that: http://en.wikipedia.org/wiki/Lies,_damned_lies,_and_statistics

You counter all of the above by bringing in all three: Patients, statements and articles, and statistics - one supporting the others, like building a rope to hang the opposition with.

Anyway, felt like I had more to say about longer dialysis - I'll be sending more on patient/staff ratios and reuse later.

Regards,
Chris Schwab
DialysisEthics2.org

[cschwab]

Chris,

Thank you for the feedback. More frequent dialysis is one of the issues we will be addressing when we go to DC. Many studies have proven that more frequent dialysis provides a better quality of life for patients. AAKP is a big proponent of home dialysis programs, although we do realize that not every patient can be on a home program.

Again, thank for your feedback.

Jerome

[cschwab]

Jerome,

Sounds like we are almost on the same page!  Though it would be great to see more frequent dialysis, I worry the sessions' length would be cut down to the point where any gain from frequency would be negated by a decrease in time - and knowing the history of this field of medicine I could see that happening.  I know Dr. Belding Scribner came up with this Hdp formula for dialysis that emphasized frequency, but as Dr. John Agar from Home Dialysis Central stated: "The squaring of frequency(in the formula) - again, in my view - maybe overplayed frequency and underplayed time" http://forums.homedialysis.org/threads/2961-Hdp

However, it is nice to see frequency is going to be brought up.

Regards,
Chris
DialysisEthics2.org

[cschwab]

Jerome,

I did want to mention too I hope patient/staff ratios would be brought up.  The latest I can remember seeing on that was what Vermont was doing, they were looking for ratios of 9 patients to 3 techs and one nurse: http://www.leg.state.vt.us/docs/2012/bills/intro/S-083.pdf and http://www.leg.state.vt.us/docs/2012/bills/intro/H-324.pdf. - sounds like what it ought to be from what I've heard over the years.

Patient/staff ratios and reuse were items we went back and forth with a couple of davita reps last summer - my state rep arranged the meeting: http://www.dialysisethics2.org/forum/index.php?topic=662.0

Anyway, great to see our reps are going to hear from those on the receiving end of dialysis - much like what happened in 2000: http://www.dialysisethics2.org/index.php/Testimonials/us-senate-testimonals.html

Best of Luck!
Chris Schwab
DialysisEthics2.org

[cschwab]

Today is the day AAKP went to D.C..  Guess we can hope and pray things went well.