Access to Better Choice in Dialysis Act of 2006 HR 5321

Discussions for Patients, Family, and Friends HD For Patients
21

Jim wouldn’t you have to assume a continuation of the cost shift to private insurance primary dialyzors? By offering to pay even a minimum payment for forth treatments doesn’t 5321 offer the opportunity to bill private insurers forth charges?

Even today dialysis clinics that offer more frequent dialysis can bill commercial insurance whatever the market will bear (unless there’s a contract) for those treatments. As far as I know, there’s no regulation that prohibits the clinic from billing commercial payers that pay secondary for 3 treatments a week as primary payers for the extra treatments that Medicare won’t cover. I don’t know if anyone has done this or not and I’m not saying that commercial payers would pay for the extra treatments, but they might. After all, the treatments were provided.

Clinics bill commercial payers multi-times what Medicare allows and most collect at least double the Medicare composite rate from a commercial payer when the clinic has a contract with the insurer. Self-insured employers and small insurance companies take a huge hit when clinics charge 5-10 times the Medicare composite rate, as they routinely do.

The only word of caution I’d have to any clinic administrator who is reading this is that if you bill commercial payers at a high rate, you’re running the risk of exhausting someone’s lifetime maximum health benefits and making it possible that down the road the person would be left with Medicare only. In my mind, this is short-sighted and inexcusable.

Bottom line…I can’t imagine any excuse any clinic that is collecting these fees could provide for not offering more frequent dialysis, especially if they have a good mix of commercial payers along with Medicare patients with Medicare supplement plans and/or Medicaid.

22

As good as my insurance is they will not pay beyond what Medicare allows - 3x week (the exception is travel abroad). Medicare is the rule setter.

Insurers (including Medicare) should be encouraging people to get a high dose of dialysis, some like Kaiser are but I think the default position is to go with Medicare’s rules. Medicare’s reimbursement restrictions are really dosage restrictions. It’s time Medicare allowed people to work with their doctors to select their right dialysis dose, Medicare should step out of the prescribing business.

If 5321 is inadequate to offer high dose dialysis incenter then there should be another Bill. I like that 5321 requires Part A data collection. How many hospital visits does $10,000 buy? I think the data will show Part A savings above the yearly cost of providing the extra runs.

23

Medicare’s restrictions aren’t dosage restrictions. When I started workin in dialysis people routinely did 5 or more hours three times a week. Clinics could still do that, but it wouldn’t be cost effective for them. It was not Medicare but clinics that cut the dialysis dose thinking that high flux dialyzers would be the same as time on dialysis. I knew patients who were on dialysis as little as 2-2.5 hours 3 times a week at one time. They were happy, but they didn’t do very well unless they were very tiny people. Shortening treatments allowed clinics get 3 or more shifts of patients into the same 10-12 hour day they used to run 2 patients.

I suspect that most people understand that more dialysis is better. The nocturnal dialysis program in Kansas City runs Sundays, Tuesdays, and Thursdays and I believe patients are on for 8-9 hours. Medicare pays the clinic the normal composite rate. Because patients are getting gentler dialysis, there’s less of a need for the high daytime staffing. The same staff work those 3 days of the week. I’ve heard that morale is high among patients and staff and I suspect those patients feel better than the daytime dialyzors.

So far as what insurance companies will and won’t pay, I believe that I’ve heard that some insurance companies have paid for more than 3 treatments a week. I’ll have to check with some people I know who are in programs that do NHHD or SDHD to find out if this is true.

I’ve talked with several providers who haven’t attempted to bill insurance companies for more treatments or for more than they bill Medicare because they assume that the insurance companies are following Medicare’s lead. In my opinion, you never know until you bill.

I think H.R. 5321 was established to get more frequent treatments at home. I don’t think its intent was to turn dialysis clinics into 24/7 factories…although, who knows if that will be what happens. Like Jim Curtis, I don’t believe that the amount that Medicare will pay for the extra days will offset the high labor costs and scheduling problems for more frequently dialysis. Plus I can’t imagine how much someone’s life would be disrupted having to drive somewhere else for dialysis 5-7 days a week plus the expense for gas or paying for the social worker’s nervous breakdown trying to arrange transportation for that many days.

So far as data collection on Part A, data is already collected, but its just reported on HD, PD, and transplant. HHD data is not reported separately in the USRDS Annual Report because the numbers of patients are too small. However, USRDS has the Medicare claims data and it might be possible to look at it by modality if there is a source that records the specific type of home hemo every individual is using. I’ll have to think about that one, but off the top of my head, I don’t know such a source.

One huge problem with the way Medicare is set up is that the hospitalization and outpatient dollars come from different pots and savings in Part A (inpatient care) has not ever been used to offset higher costs in Part B (dialysis and outpatient care). This has made it difficult to justify more treatments. However, if 5321 resolves that problem, I’ll be thrilled.

24

They’re dosage restrictions because they restrict the most important element of the dialysis dose: the frequency. A forth treatment could well be seen as less of a burden then an extra hour tacked on to an already long run. I think Medicare should stop saying no for dialyzors, we can make that decision, with our doctors, for ourselves.

If a dialyzor want to dialyze three days a week that is fine with me but if a dialyzor wants to dialyze four days then Medicare should support that decision. Medicare should let dialyzors say yes to high dose dialysis. People should be able to achieve a high dose of dialysis ie a high dose due to an increased frequency, in the treatment setting of their choice

I think high dose dialysis has less to do with length of treatments as it does frequency. Even going every other day has a greater effect than adding an hour to the run length.

I thought no one has the data on what would happen to the total cost of care if a person adds a treatment - isn’t that part of the NIH study along with mortality? I do think that many, many people would benefit from high dose home dialysis but I also think that you should not have to go home to get more than three treatments a week. Maybe few people would say yes to fourth treatments but it should be the dialyzors choice.

25

Aren’t we trying to beat the system another way? For example, if they only are willing to pay 3x week then don’t you think doing home dialysis 3x a week for 6-8 hours compensate for that restriction? Am not sure if anybody with chronic esrd doing that or does it work… :?:

If Medicare is the main decider then why commercial insurance? Perhaps get rid of commercial insurance for those with esrd and have employer pay medicare instead… so if your working maybe an incentive/bonus of having extra days?..

26

As I have posted before I use the Scribner Hemodialysis Product (HDP) method to compare the impact of varying treatment frequency and length. Going by that a three time a week, six hours per treatment schedule offers a HDP of 54 (three squared times 6). A four day a week schedule with four hour runs offers a HDP of 64.

Some may prefer the three day a week schedule and they may feel okay – I ran 11 years incenter on a three day a week schedule and still managed to get a lot done - but I believe that one will feel better doing the four day a week schedule.

For me the important thing is that people have the option to dialyze as often and for as long as they can stand.

27

I think it is really quite cruel that dialysis patients are not allowed to dialyze as often and as long as they need to feel good. I also think it is quite cruel that they don’t have a choice of where to dialyze home or in-center. I also think it a bit cruel that centers who don’t offer home hemo or longer in-center treatments don’t even inform patients that they probably would feel better and do better with more dialysis.

28

I’d love to see patients be routinely given more dialysis and to have the choice of how and where they get it. I think patients would be healthier and happier.

However, the US is running a huge federal deficit due to other priorities that take funds away from things I would like to see like more dialysis for people with kidney failure. My suggestion is to write your elected officials to get them to co-sponsor this bill in the House or to sponsor a companion bill in the Senate. Write the administrator of the Centers for Medicare and Medicaid Services (Dr. Mark McClellan) and tell him your experience with more dialysis. Go to the media in your area and share your story so people can see that dialysis patients can do live full and happy lives. Organizations promoting transplant have made dialysis look like a fate worse than death to push for more organ donors. Tell people that organ donation and transplantation are worthy causes, but for those who are not candidates or are waiting for a kidney, your type of dialysis lets you have a better life than doing dialysis in a clinic. BTW, you can go to our Legislative Action Center to find out your elected officials and see all the media in your area.
http://capwiz.com/meiresearch/home/

Finally, the NIH Study may produce results that will help convince Medicare to pay for more treatments. Or (and this is my huge fear) it could turn out like the HEMO Study that “proved” that higher dose of dialysis (high flux dialyzers) didn’t improve outcomes. However, if you read what Dr. Eknoyan said in this summary you’ll probably agree: http://www.niddk.nih.gov/welcome/releases/12-18-02.htm

“We are getting as much as we can expect out of 3 or 4 hours of dialysis given three times each week. To improve survival and reduce hospitalizations, we are probably going to need radical changes, such as significantly increasing the time on dialysis at each session or by increasing the frequency (number of days) of dialysis, both of which would need to be evaluated,” said Eknoyan.

I suspect this is why the NIH Study was proposed – to evaluate whether more time on dialysis or more times weekly would reduce hospitalizations and improve survival. My hope is that the NIH study will be able to recruit enough patients and that the design will actually show what Dr. Eknoyan believed to be true.

29

I’m not detered by the federal deficit and the budget constraints resulting from the choices our elected leaders have made. I believe high dose dialysis will pay for itself through decreased Part A hospitalization costs and other ESRD spending decreases - for instance through less spending on EPO.

The other thing I remember when I go to DC (I’ll be in DC lobbying for 5321 on June 20th) is that I am not in charge of the entire federal budget and I am not there to represent tax payers. I am there to make the case for what would be best for dialyzors based on my personal experience.

As soon as I am put in charge of the entire federal budget I’ll start worrying about how to pay for optimal dialysis.

30

One thing I will keep in mind while I am talking to Washington State Representatives is that this is all about the money. No one, anywhere is saying high dose dialysis is contraindicated. No one says high dose dialysis does harm, ever. If it was free of course it would be widely available.

But high dose dialysis is a challenge to provide and it cost money up front and dialyzors don’t want it and we always do it the other way … it will take some work to get this but I am convinced 5321 is worth its price. 5321 is a good value for the tax payer.

31

Bill, While insurance companies often pay much more than Medicare for dialysis treatments, they will not usually pay for more than the “customary and usual” number per week. The list rate for dialysis treatments is very high (~$900 in most cases), but most large insurance companies recive significant discounts per contracts. (These contracts often limit patient choice because they require all patients of ABC Insurance company to dialyze at XYZ dialysis company. I once had a patient who lived less than a block from my unit and had to drive across town because that is where the insurance company contracted with the dialysis company. If the insurance comany wants to grant a patient an exception, the dialysis company threatens to raise the prices because they want the patient volume…but that is another subject)

I have seen HMO’s that are willing to pay for more frequent treatments because they realizethe savings when a patient spends less time in the hospital. I am familliar with one such contract where the HMO paid 50% of normal charges for the 4th, 5th and 6th treatment of the week. The dialysis unit did fine from a financial standpoint, even in-center from what I was told (it wasn’t my clinic, so I didn’t see the books).

As for the other recent comments in this thread, I agree completely that patients should be able to dialyze more often. I have high hopes that the NIH study will demonstrate this in a convinding way, and that Congress will combine Parts A&B of Medicare for ESRD patients so that increasing dialysis frequency is compensated by decreased medication and hospitalization costs.

Jim Curtis

32

Hi

I thought that medicare picked up the main bill after being on dialysis after 30 months?

Hey Bill

Do people on dialysis have a lobby group and if what is the name?
I think that is what we really need. Thanks Bill, you have a great deal of information.

bobeleanor :slight_smile:

33

Medicare takes over as the “Primary Insurance” after 30 months, and they pay 80% of the rate set by Medicare. Medicare supplemental, or “Secondary Insurance” will then pay the remaining 20%. It is very important to have this secondary coverage.

There is an organization called the American Association of Kidney Patients that does some lobbying for dialysis patients. There website is http://www.aakp.org/

Jim Curtis

34

This is why Medicare is the rule setter for dialysis reimbursement. 75% of all people on dialysis have Medicare as their primary payer. Right now Medicare rarely reimburse for more then three treatments a week and the private insurers follow Medicare’s lead.

Actually the aakp doesn’t have a way for dialyzors to get directly involved in lobbying, their get-together’s focus is social/educational not lobbying. If you want to engage in lobbying I would recommend the Renal Support Network:

especially the RSN program WeKAN:
http://www.rsnhope.org/programs/we_KAN.php

I participate with some of the WeKAN activities and I am very impressed with the people involved. I know that they are organizing a dialyzor fly in June. This is where 20 or so dialyzors set up appointments on the Hill and visit legislators on a specified day. The thing WeKAN does well is to teach dialyzors to be self directed, motivated and effective.

The RSN is a member of the Kidney Care Partners:

KCP is an industry wide effort and is making progress with HR 1298 and S 635. I think going forward KCP will lead some of the program improvements we are hopping for, right now they are working on Pay for Performance. It should be interesting.

KCP also has a Political Action Committee. If you want to really engage you could support the PAC through the RSN.

35

I spent Tuesday, June 20th in Washington DC lobbying for HR 5321. I had appointments with the Health Legislative Aids in the offices of seven Washington State Representatives, all of whom are already on HR 3096. I asked them to join HR 5321. I also did thirty-two drop-offs.

Drop-offs are when you stop by office without an appointment and leave material asking for support. I targeted all the Republican members of the House Energy and Commerce Committee since that committee could move the Bill on in the process. I would just say “I’ve been on dialysis for over 15 years and I am asking for support for this legislation because it will allow many more people to do as well as I am doing.” – then I would hand the person a copy of the Bill and a one page summary statement. That’s all a drop-off is.

I also stopped by Congressman Bass’s and talked to John Billings his HLA to let him know I was out lobbying for his Bill, particularly since I was targeting Congressman Bass’s Republican colleagues on the House Energy and Commerce Committee.

Here is a list of Representatives who cosponsored HR 3096 but who are not yet on HR 5321:
Rep Hart, Melissa A. [PA-4]
Rep Kirk, Mark Steven [IL-10]
Rep Dicks, Norman D. [WA-6]
Rep Smith, Adam [WA-9]
Rep Hastings, Doc [WA-4]
Rep Schiff, Adam B. [CA-29]
Rep Kildee, Dale E. [MI-5]
Rep Goodlatte, Bob [VA-6]
Rep Lewis, John [GA-5]
Rep Inslee, Jay [WA-1]
Rep Jackson-Lee, Sheila [TX-18]
Rep Bordallo, Madeleine Z. [GU]
Rep Wexler, Robert [FL-19]
Rep Sanders, Bernard [VT]
Rep Brady, Robert A. [PA-1]
Rep Moran, James P. [VA-8]
Rep Higgins, Brian [NY-27]
Rep Goode, Virgil H., Jr. [VA-5]
Rep Christensen, Donna M. [VI]
Rep Capuano, Michael E. [MA-8]
Rep Israel, Steve [NY-2]
Rep Hinchey, Maurice D. [NY-22]
Rep Lofgren, Zoe [CA-16]
Rep Jefferson, William J. [LA-2]
Rep Jones, Stephanie Tubbs [OH-11]
Rep Tierney, John F. [MA-6]
Rep Reichert, David G. [WA-8]
Rep Baird, Brian [WA-3]
Rep McGovern, James P. [MA-3]
Rep Larsen, Rick [WA-2]
Rep Rothman, Steven R. [NJ-9]
Rep Stupak, Bart [MI-1]
Rep Schakowsky, Janice D. [IL-9]
Rep McHugh, John M. [NY-23]
Rep Fattah, Chaka [PA-2]

If you see your Representative on this list or even a Representative from your state on the list then ask them to cosponsor HR 5321. You can just call, email or stop by their local office to drop off information. You do not have to go to Washington DC.

Here is a list of the current cosponsors of HR 5321 as of today:
Rep Bass, Charles F. [NH-2]
Rep Clay, Wm. Lacy [MO-1]
Rep Clyburn, James E. [SC-6]
Rep Cummings, Elijah E. [MD-7
Rep Johnson, Sam [TX-3]
Rep McDermott, Jim [WA-7]
Rep McNulty, Michael R. [NY-21]
Rep Michaud, Michael H. [ME-2]
Rep Owens, Major R. [NY-11]
Rep Payne, Donald M. [NJ-10]
Rep Rangel, Charles B. [NY-15]

If you see your Representative on this list or even a Representative from your state on the list then thank them for cosponsoring HR 5321.

36

Here is the handout I put together for my drop-offs. I called HR 5321 the Dialysis Solutions Bill because I believe HR 5321 offers a solution to three important problems: the over all costs of caring for people on dialysis, the high mortality rate of people on dialysis and dialyzors’ failure to thrive while on dialysis.

37

Hey Bill, is this handout complete? If so, will this one be appropiate for our lawmakers?

38

Gus,
I shared my handout so you could see an example. I highlighted the points of the Bill that I thought were important. You are welcome to copy any part of it but it would be best to include a copy of the Bill if you are doing drop-offs. I also included a one page sheet with my contact information and a very brief ESRD history. This packet is for drop-offs.

If you are sending email it is best to try and keep it very brief – or ask if you could send an attachment. Keep in mind that they are receiving hundreds of emails so the briefer the better. Same with phone calls. I think it all depends on the situation whether you include more or less information.

One way to approach it is to read all the information and pick the three things most important to you. I’m also uploading a one page that Dr. Blagg and Dr. Lockridge used for their visits and that Dr. Blagg has made available.

Pull out the pieces you think are most important and then tell your representative. Remember … unless you know different assume the person you’re talking to doesn’t know much or anything about dialysis.

Below is the helpful information the Coalition for Dialysis Patient Choice has published. You can access their website at www.dialysischoice.org

FREQUENTLY ASKED QUESTION

Q. What is HR 5321?

A. HR 5321, the Access to Better Choice in Dialysis (ABCD) Act of 2006, is a bill that was introduced on May 9, 2006 by Representative Charles Bass (NH-2). Original co-sponsors of the bill include Representatives Sam Johnson (TX-3) and James McDermott (WA-7).

Q. Why is this bill needed?

A. When a person’s kidneys fail, hemodialysis (HD) replaces kidney function and keeps them alive. Today, this treatment is mostly done three times a week—while functioning kidneys work 24/7. Hundreds of studies on daily (short or nocturnal) HD show consistent benefits. These benefits include better health outcomes, better rehabilitation, and lower total care costs. But, few patients receive daily HD today due to the way HD is paid for by Medicare (CMS).

CMS routinely pays for only three HD treatments per week. None of the studies to date has been large enough to convince CMS to pay for daily HD in all cases. Doctors can write a medical justification letter to ask for payment for extra treatments, but this must be done for each patient, on a case-by-case basis. The extra treatments may or may not be paid for. Most centers can’t afford to give treatments they are not paid for, even if patients would benefit.

HR 5321 will help centers to give patients more than three HD treatments per week (up to 7). It would create a large pilot program to pay for the extra treatments. The annual cost of the pilot program is capped in order to control costs while expanding access to approximately 10,000 patients.

HR 5321 also directs the Medicare Payment Advisory Commission (MedPAC), which advises Congress on Medicare policy, to do a cost/benefit analysis of the data collected through this program. Due to the large amount of data that will be collected through the program, the analysis will demonstrate whether more frequent HD does, in fact, cost less and lead to better outcomes. If so, these results may help change CMS policy permanently so all patients will have access to more frequent HD.

Q. How is this bill different than previous “Daily Dialysis” bills (e.g., HR 3096 of 2005)?

A. Similar to HR 3096, which was introduced by Representative McDermott in 2005 and gained 42 cosponsors, HR 5321 expands access to more frequent HD. However, HR 5321 reduces costs by limiting the annual expenditures allowed in each year of the program, and lays out specific data that will be collected and analyzed in order to demonstrate the clinical and economic benefits of daily HD and ultimately guide long term payment policy.

Q. How does this bill relate to the “Kidney Care Quality and Improvement Act (S 635/HR 1298)”?

A. The main goal of S 635/HR 1298 is to obtain a yearly increase in the rate CMS pays for HD (the “composite rate”). Right now, dialysis is the payment system within Medicare that is not updated annually to account for inflation. This change will help patients and providers—but this bill does not address access to more frequent HD.

Q. HR 5321 is quite specific in its requests. Why?

A. The bill clearly describes how the pilot program should be designed in terms of scope, size, budget and implementation. The bill would:
Provide limited—but predictable—payment to centers for more frequent HD.
Gather data to analyze how payment policy should be changed to support more frequent HD.
A 5-year time span and maximum cost (up to $90 million in the fifth year) were set to limit the cost of the program. Limiting total costs is important with today’s budget restrictions.
A fixed number of patients were proposed for this pilot study to ensure that enough “real-world” data will be collected to guide lasting payment policy.
A cost/benefit analysis will start once at least 2,500 patients have begun daily HD. The bill allows for about 10,000 Medicare patients to get more frequent HD during the fifth year.
A range of economic factors (cost of hospitalization, cost of dialysis drugs, tax revenues, disability payments, share of medical coverage paid by employer group health plans) are clearly outlined as items to be measured.

This will ensure that the full range of clinical and rehabilitation impacts of more frequent HD is considered. Data to support these analyses is routinely captured by CMS for dialysis patients.

Q. In HR 5321, payments for the 4th through 7th HD treatments are lower than the composite rate. Why is that?

A. HR 5321 intends to provide enough payment to dialysis centers to allow them to offer more frequent HD to their patients at a reasonable cost to Medicare. It is also set up to fit into the current composite rate payment system to make the pilot study easier to manage.

Today’s composite rate pays for each HD treatment, normally three HD treatments per week. It is designed to pay for all supplies, labor, and overhead for normal HD treatments in the three-times weekly schedule. For this pilot study, the payment (composite rate) does not change for the first three HD treatments per week. The pilot does not suggest that any amount less than the current payment is enough for the first three HD treatments per week.

Additional HD treatments beyond the first three cost slightly less to provide. Each extra treatment uses more supplies and labor, but does not raise the center overhead costs. So, HR 5321 proposes to decrease the level of payment for each additional treatment beyond the 3rd.

The payment structure in HR 5321 manages the total costs of this program, but allows dialysis providers to afford to offer daily HD.

It is possible that a very different long term payment approach for more frequent HD will be more appropriate (e.g., a weekly rate for more frequent HD) and this pilot program and analysis will help to clarify this.

Q. How does the HR 5321 pilot study relate to the NIH Study on More Frequent Dialysis?

A. The HR 5321 pilot study complements the NIH Study.

The NIH study is a “gold standard” randomized, prospective trial. It will look at certain clinical endpoints: left ventricular mass (a sign of heart health) and physical function. The NIH study will take about 5 years, and fewer than 400 patients will get daily HD in this study.

A greater number of patients (than the 400 in the NIH study) are needed to analyze the public policy impact, such as total hospital days, total costs, and rehabilitation, of more frequent HD. Also, the number of patients who will choose to participate in the NIH study is not yet clear, and many of those patients may come from outside the US. Relying only on the NIH study may lead to a long wait for data that won’t be enough to help guide long term payment decisions. Meanwhile, a whole “generation” of patients could
miss out on the benefits of more frequent HD.

HR 5321 would help more patients receive daily HD in the same 5-year time span as the NIH study. The HR 5321 data would provide practical insight into the fiscal impact of more frequent HD. Results of the HR 5321 pilot and NIH studies would offer a balanced perspective to help Medicare make sensible payment decisions based on a larger body of clinical and financial data.

Q. How can I help support HR 5321?

A. Right now, this bill needs more Congressional sponsors. You can:

Go to the Home Dialysis Central Action Center Here:
http://capwiz.com/meiresearch/issues/bills/?bill=8765236

39

Bill, thanks for the additional information…very helpful. I have been faxing and emailing them but its uncertain whether they consider or whether they really read these messages. For the most part, we can keep trying. How do you feel that these messages are sent more than once? Is that appropiate?

40

Well I’ve tried it different ways. I always try to get to know the Health Legislative Aid of the Representative that I am targeting. Usually these are young, smart people so you can be light hearted. One I sent emails regularly to “remind” them to cosponsor.

Gus with your own Congressman and Senators you should call and talk to the HLA and get to know this person. As a constituent you should expect prompt responses to your calls and emails but always be polite if they come up short because they are very busy people. But at the very least make sure these individuals know what dialysis is “I don’t pee”.

For issues like dialysis … dialysis amounts to budget dust in the Federal scheme of things… you must assume that the HLA is the key individual. Keep track of who this person is, in some offices there will be high turnover in this position so you may get someone up to speed and then find yourself back at square one. But some of the best time you can spend lobbying is getting to know these key individuals in your Representatives’ office.