A new HR 1004 for the 109th Congress

In the last Congress, the 108th, there was a Bill – HR 1004: The Kidney Patient Daily Dialysis Quality Act of 2003 which would have amended title XVIII of the Social Security Act to provide for payment under the Medicare Program for more frequent hemodialysis treatments. In the end the Bill attracted a total of 29 Sponsors and Cosponsors (I note that the entire Washington State Congressional delegation, six Democrats and three Republicans, supported this Bill which was introduced by my Congressman) but there never was a companion Bill introduced in the Senate.

I have not heard any news about a new version for either the 109th House or the Senate. I have heard that the NIH study has run into difficulty recruiting patients so I am worried about waiting until 2008 for results of a study that may not meet expectations. I think a new version of 1004 should be introduced and to make it easier to pass I propose that the new Bill cap enrollment in a more frequent dialysis payment program. If I were authoring the Bill I would direct CMS to pay a forth composite payment per week for more frequent dialysis (incenter or home) for one percent (1%) of the US dialysis population. If someone dialyzed five or more times per week for a month they could be enrolled in the “More Frequent Hemodialysis Program” and CMS would automatically pay for four treatments per week. However the size of the “More Frequent Hemodialysis Program” would be limited to 1% of the US dialysis population, about 3,000 people.

Here is my reasoning:

  • 3,000 people dialyzing more frequently would be at least a tripling of the number of people currently dialyzing more frequently.
  • Capping the number at one percent would lower the Bill’s Congressional Budget Office (CBO) score. The CBO score is what the Bill is expected to cost over 10 years. HR 1004 was expected to score out at 500 million dollars (50 million dollars a year) which implies 5% of the dialysis population would be receiving more frequent dialysis by year 10. In the current budget environment successful legislation must either find a way to pay for itself (these are called budget offsets) or the CBO score must be a small enough amount that fiscal conservatives in the Congress (from both sides of the aisle) can bring themselves to support the legislation without offsets.
  • Capping the enrollment at one percent would increase consumer interest in dialyzing more frequently. Nothing builds demand like scarcity – telling someone they can’t have something makes them want it all the more. Better to have the reality of 3,000 people dialyzing more frequently and another 3,000 demanding the right to dialyze more often then to struggle to get the theoretical right to dialyze 15,000 people more often.
  • If the program became fully enrolled there would be increased political pressure from dialysis consumers, making it relatively easy to raise the enrollment cap.
  • More people on more frequent dialysis would provide more information about the possible hospitalization savings that come from dialyzing people more frequently – if the NIH study is unsuccessful we’ll need all the data we can get.
  • Having the possibility of getting a fourth payment per week would encourage the growth of home daily dialysis programs which would address the access/fairness issue.
  • Is it fair to the thousands of people who could benefit tomorrow from more frequent dialysis to wait years for the NIH study results, and then additional years for the legislative process to respond to the study?

It may not succeed but it could; no matter the chances for success I think we should continue to bring the issue to the attention of Congress. Access to more frquent dialysis should not depend on your zip code.

Hi Bill, I find this totally unrealistic, as right now we have 35 people on nocturnal just in our unit. That is not counting all the other people on home or noctural dialysis all over the country. What about the other in-center people that really need more than 3 X a week dialysis?
I think that we should shot for 3% at least that would be 9000 people.
That would cover both in center and home and nocturanl.
Hope you see where I am coming from.
Wife of Ralph
Hemo 3 x week in center 5/03
nocturnal 6 nights a week 6/04
and Doing great! :lol:

Hi Patricia, the most current data is for 2002 and I am sure there has been an increase but at that time there were about 1,000 people in the United States doing home hemo and I would guess about a third of those were doing more frequent hemo. Add to that a handful - dozens? - who were able to dialyze more frequently incenter. So my best guess is that there are about a thousand people doing more frequent hemo dialysis in the US.

I also would guess that some portion of those people are already geating four reimbursements a week so really I think I am in the ball park. Another way to reckon the numbers is to assume the majority of more frequent hemo patients are on either the Aksys or the NxStage so that would be around 300 people.

I think it is unrealistic to think 3,000 people will be dialyzing more frequently in two years if the Federal rules stay the same.

I think even with us few patients under this research will show a considerable difference in our health compared to those in center 3x a week. What will the government say and think? Quite frankly their already surprised at this moment…by the time the research is over in 2008 we all gather at the table…

Gus, I like your optimism but what will the government say, think and actually “do” leaves me pessimistic. I just finished reading the book “Saving Milly” and it was a real slap in the face. In order for home hemo to be available to everyone will be and is a hugh challenge and needs all the support and work anyone can do. The book was real testimony to the fact that it’s politics first and always.

Should the few of us who are doing home hemo be denied home hemo in 5 years? Did the they deny it 5 years ago? Still, there were few of us and I think that trend will contnue like that. Based on my little research NOT everybody wants to go home, but for those who do the option will be there and those options will be better than the earlier years.

Simply put, not many people have the nerve to go home and do dialysis…it’s just a few bunch of us. Isn’t that special? I think it is…Just maybe just maybe in about 8-15 years we little bunch will serve as an example to the new generation and then most likely you will see an influx of patients doing home hemo…

I agree that “not everybody wants to go home” but based on the experience of New Zealand where 40% of all dialysis consumers dialyze at home something is limiting the use of home dialysis in the United States. Should we not worry about this? Is it okay if 90+% of US dialysis consumers dialyze incenter? Is it okay that 99+% of all people living through hemodialysis in the US dialyze three times a week? Should we be satisfied with the dialysis outcomes here in the US? Is a 23% annual US incenter mortality rate acceptable? Is it okay to wait 8-15 years for a new generation of dialysis consumers with higher expectations? Higher expectations based on the experiences of people who post to this discussion board?

My answer to all these questions is an emphatic NO. No it is not all right to give up on the people living with kidney failure today. A 23% annual mortality rate is NOT acceptable. NO this is not the best we can do. So with that in mind what needs to be done? To me an obvious first step is to work to make more frequent dialysis, home and incenter, available throughout the United States, rather than certain centers of excellence. Every person facing renal failure should have the option to dialyze at home and/or more frequently. At the same time we, the people who have experienced the empowerment of home dialysis and the well being of more frequent dialysis need to reach out to our renal brothers and sisters. We need to tell our stories. We need to let people know about the false promise of short, three day a week dialysis.

This website is a great help and resource but Congressional action is needed. A Congressional mandate to CMS to pay for more frequent dialysis will be an incentive for more wide spread access and it will also be a strong signal to the renal community that more frequent hemodialysis is the right path for a large percentage of the dialysis population. We can do this and it needs to be done.

Bill, I couldn’t agree with you more. I think it is totally unacceptable that patients all over the U.S. A. don’t have the option of more dialysis and home dialysis. I think it is totally unfair when I see patients in our area “sick” just because they haven’t been educated or programs available. The second to this is seeing families totally disrupting their lives just to fit into a dialysis schedule in-center. Here we are talking about our lives and what is going on while others with the same disease are struggling to get by with the diet and fluid restrictions along with the trips and time spent in center. Centers are not going to be motivated into doing more frequent dialysis unless the money is available for them for those treatments. Yes, we do need to get off our
dufs and start hounding CMS. If my father had to wait until 2008, I say with conviction he wouldn’t be here. If dialysis didn’t take him pure depression would have.

Now think really closely there…what percentage of patients do you think don’t have the will, responsibility, or even care about feeling good? 45% ?..60%? …90% ? :oops:

even if it was only 10% of patients who “have the will, responsibility, or even care about feeling good” that would be 30,000 people…a 100,000 seems closer to the truth.

Believe me we’re headed that way…simply there are too many patients on dialysis with more coming in every month…the dialysis population is getting too huge that it’s becoming too costly to maintain. I think one of the solutions is by sending the patient home costs will be controlled. On the other hand the patients health wll also improve, so yes I think we’re headed that way…after all we’re here doing it already and more are following, but still it will remain like it has been said…only a few handful of patients will go home…suprisingly in 15-25 years there will probably be something incredibly better than home dialysis…now what effect will something like that will have? prolly alot…not just the patient…affects us all.

Gus, Apparently you haven’t noticed but when an area gets filled with dialysis patients more centers are built home hemo dialysis programs are not started. I think if you did a little more research you would discover that you are looking at things through tinted glasses. I don’t think at this time anyone really knows how many patients would do home dialysis. There are so few programs and a very small number of patients even know it can be done. I could walk into the 5 closest dialysis centers to my home and not 1 patient would even know it was possible to do dialysis at home other than PD. I have offered to go to their support groups and talk about it but wasn’t allowed too. Take a look at where the programs are…not to many when you consider the whole United States. Do you think the patients that are out of the area of centers with programs even know hemo dialysis can be done at home? We have doctors in our area that don’t even know it.

There’s two types of dialysis centers…the ones for Profit and non-profit ones…which one would you choose? Who do you think has more emphasis on being humane? …Our moral values suggest that the health and well being of people as a whole comes first than $$$…

In my opinion, Profit centers don’t wanna hear it and don’t wanna send the patients home. Their goal is to dialyze as many dialyisis patients within a very short time…what’s the end result? Yup, I feel sick…

So if you look closely, it’s a dialysis war…non-profits Vs. Profits…now when it comes to HomeHemo options who do you think supports it more?

The technology is here and eventually will make an impact whether profit or non-profit…but the choice will be the ptatients…this will take time and don’t think it will happen overnite…

But of course, we may be some of the fortunate ones being home doing dialysis and others will follow…I know we wish to make a BIG stride overnite but I think we’re already setting an example for others…I think that’s a BIG step…

Your right we have put our Right Foot Forward with a Big Step now it’s time to go with the Left. The small non-profits in the rural areas need the payment for the extra treatments to even begin thinking of offering them.

I don’t know … for profit/ not for profit. It seems to me that that battle is over - we are in a for profit world. Over 80% of all treatments are provided by for profit companies in this country. That number is going up, not down. I think that one impact of offering reimbursement above just three times a week will be to get the for profit corporations to take another look at their business model.

I think it easy for a for profit business to focus on existing business models (i.e. incenter, 3-4 hour treatments, three days a week); these business models don’t include home dialysis let alone more frequent dialysis. I really believe that those of us enjoying the benefits of home and more frequent dialysis owe it to our fellow patients to make these life enhancing treatments available widely. I’m open to suggestions on how to do this but to me the obvious first step is to get Medicare to pay more for more treatments. Pay for what we need.

BTW my read of the federal ESRD entitlement legislation makes believe Medicare could pay for more treatments tomorrow if they decided it was medically justified. There is nothing in the law that says people can only get three treatments a week reimbursed. I just don’t know how to get Medicare to step up other than through acts of Congress or a lawsuit. I’d support suing to force Medicare to pay for what we need but lawsuits are outside my skill set.

Ya but ummmm, medicare is losing money…is that a fact or is that their opinion?

If the system you say is mostly here for a profit then we better think different… :roll:

Maybe a better plan might be to boycott and appose the for profit centers in favor for the non-profit centers that say yes to HomeHemo… :idea:

Now wouldn’t that be more humane to the rest of the patients?

Now try to get more $$ to fill their pockets and leave us patients even flatter…(slang for dry!)…

…just my opinions…lol! :oops:

Hard to see what about this would cause you to lol

Boycott For-profit units? Wake up! People lives are at stake. You dialyze or you die.

Now you tell me, how many people have stood up and died for a cause? :oops:

Try to remember Martin Luther King… :roll:

I think the Conditions of Coverage have to be expanded to include the extra treatment (s) and promote more home dialysis. Does anyone know if the networks get involved with this type of stuff.

Hi y’all,

The Networks do get involved with the Conditions for Coverage–but the purpose of the Conditions is to codify the regulations in one place so the Medicare Surveyors will know what they should be looking for when they examine clinics. They’re not the right place to talk about coverage for PAYING for dialysis, though. That’s a Medicare decision–and Medicare is choosing to wait for results of the NIH study of regular in-center vs. daily or nocturnal hemo. Those results (assuming it is possible for the participating centers to recruit enough patients) won’t kick out until 2008 at the earliest.

1). We need to do what we can to ensure that the NIH study is successful, so that CMS will have to take notice of the better outcomes “proved” in a prospective, large study (as opposed to most of the current research, which is retrospective or involves very small samples of people)

2). It might be possible to intervene with the FI’s (fiscal intermediaries)–the regional bodies that decide what Medicare will pay for in a certain part of the country. I believe there are 19 FI’s, but I could be wrong about that–Beth knows this area better than I do, so she can correct me on this.

3). Patients who have employer group health plans (EGHPs) when they start dialysis have their primary coverage through those EGHPs, and secondary coverage through Medicare–if they take Medicare. During the 30 months that an EGHP is primary, it may well pay for 4 or 5 or even 6 treatments per week–they’re NOT Medicare & don’t necessarily have the same restrictions. Even if they will pay for only 3 treatments per week, they typically pay 3 times what Medicare will pay–and the extra money can make it possible for clinics to be able to afford to offer more frequent treatments both to the patients who have this coverage and to the ones who don’t. So a 3rd key to getting more frequent dialysis paid for may be to keep more working-age patients working and insured. This is a win-win-win for patients, clinics, and Medicare.