$$$$$ Impact of ESRD on Families

Hi y’all,

In another thread, Marty wrote:

You make a very valid point about patients not loosing everything before they can start home hemo. I had my own business which I ended up closing just because of dialysis. I drove dad to center 3x a week thus not being open for customers. Then add in the other doctor appointments and the hypotension episodes and I couldn’t stay available long enough to make any money. When we went to train, I obviously had to close for 6 weeks. By the time I got back the effort I had put into getting dad on home dialysis and the fact I had been without my income for so long I never reopened.
I have run into wives who have had to give up their employment just to get their husbands to treatments. In a rural area it is not unusual to drive anywhere from 20min. to an hr. to reach a center. When you have an in-center patient who is weak and not feeling well, the drive is just to long to trust them by themselves.
I don’t think much attention is paid to the loss of wages of family members. One of the biggest “shocks” I got when we started down this road was finding out that not only is the dialysis patient giving up employment to get in-center treatments but it was branching out to the wives, mothers, husbands etc. When I asked our center how other families dealt with the situation, I just got a blank look. Then I realized dialysis was going to take over my business and income and it was going to be my problem.
I totally agree more upfront information needs to be given before everything is lost. I also think it would be interesting to know just how many tax dollars are lost by other family members giving up jobs.

There is a myth in the dialysis industry that in-center hemo is “less burdonsome on families” than home treatments. What you’ve said is one reason why this isn’t true.

Along with the virtually unchanged adjusted mortality rates for US dialyzors over the past decade (92% of whom are getting in-center hemo)–despite the ESRD Network clinical performance measures and the KDOQI guidelnes, the terrible financial impact of ESRD on families is a vital and mostly overlooked outcome.

On one hand, dialysis centers look at “payer mix” – the % of folks who have Medicare only (on whom they lose money) vs. Medicare + Medicaid, or, best of all, private-pay insurance through an employer group health plan (EGHP). EGHPs pay a higher rate than Medicare–on average 3x what Medicare pays. This means that the more folks who keep their EGHPs, the more likely that a center can be profitable and stay in business. And they are businesses. Industry-wide, at any given moment, 75% of dialyzors have Medicare as their primary health plan, and it pays 66% of the costs. And 25% have EGHPs, which pay 33% of the costs.

On the other hand, the industry has not yet caught on to the fact that loss of EGHPs is a not inevitable consequence of the way we deliver care.
– Each year, 100,000 new people start dialysis, and half of them are working-age. But 40% of people start dialysis on an emergent basis, with less than 3 months notice. And nobody has any idea how many people get any predialysis education at all. We do know, from research, though, that only 1 in 4 people is told about PD or home hemo. How many get financial counseling? Probably even fewer.
– Only about 1 in 3 or 1 in 4 people gets EPO to treat anemia before they start dialysis. Untreated anemia leads to permanent heart damage–and causes severe fatigue that forces many dialyzors to give up their jobs months before they start dialysis.
– 92% US dialyzors are on in-center hemo, the least work-friendly option we can offer, because it causes the most symptoms, the most restricted diet and fluids, the most travel time, and takes chunks of time out of the work day.
– In just the year 2002, there were 6,992 people who were working 6 months before they started dialysis, and not working any more once they did start. If just these people kept their jobs and 72% (the average rate) kept an EGHP plan, the industry would benefit more than if there was a composite rate increase for every person.

Average US income for a family of 4 is about $60,000/year. Private disability policies–if you are lucky enough to have one–pay about 60% of this (and most will subtract any SSDI benefits). SSDI pays about 35% of previous income. And SSI pays even less. I’ve attached a slide to show what this looks like in terms of ESRD family income.

Beth and I estimate the total financial impact of dialyzor job loss to be somewhere around half a billion dollars/year–including the costs of SSDI, SSI, lost federal income tax, lost income and benefits, etc. And we don’t even have a way to calculate in the loss of family members’ jobs and businesses.

If we set up a system where people were informed of all of their options–and their likely outcomes–before they start treatment, made sure anemia is treated, and improved access to work-friendly home treatments, we could help ESRD families keep their jobs and health plans, improve payer mix for the industry, and reduce the cost of dialysis to Medicare–which then might make it even more possible to do things like pay for more treatments/week..

Dori and Beth,

I am so glad this subject is coming to light. Loss of income is a hugh problem for families. I just got through donating money to a center to set up a patient fund so patients who needed help with traveling cost, or plumbing etc. to get into a home program would be able to do so. These patients or their spouses want to return to work and need home dialysis so they can. I think this board is going to make a signifcant difference in the way patients and dialysis is seen in the future. God Bless you both.

Hi y’all,
Bobleleanor (on a different thread) wrote:

When I was in center it cost my insurance company $50,000.00 a month and $880.00 a month for the doctor to check my name off the here and present list.


This is what happens when dialysis providers try to make up on “quality” (e.g, the quality of one person’s really good employer group health plan) vs. quantity (keeping as many people working and insured as possible so they don’t need to get greedy). We do hear of charges of $30,000 or $40,000/mo for dialysis–this is the first time I’ve heard of $50,000, but I’m not surprised.

There are two problems with this approach:

  1. Health insurance carriers are catching on. The rate of ESRD in the population is 11 per 1,000. So, even an insurer of 5 million lives will only have 5,500 people with ESRD. These numbers are small enough that dialysis could stay under their radar–except when one person costs them upwards of $300,000/year! This comes to their attention, and they take steps to contract for much lower rates–in some cases dialing down to the inadequate level that Medicare pays. So, greedy providers are figuratively killing the goose that lays the golden egg. This has already happened in several parts of the country.

  2. These exorbitant fees are using up people’s lifetime insurance benefits.. Many health plans have a cap that may be $1 million or even $2 million–after which you are no longer insurable (probably by anyone). If, during the 30 months that an EGHP is primary, the dialysis company manages to use up the lifetime benefit, it harms YOU down the road if you develop another serious illness, have an accident that requires surgery, need a transplant (and no longer have drug coverage), etc.

I’m not sure there is a policy answer to private pay rate gouging, free enterprise and all but this is one crazy system. I think one thing pushing dialyzors out of the workforce is the insurance issue.

Dori do you know what the employment figures are for dialyzors in countries where insurance is not tied to work? Canada for instance.

I think there is a push/pull on dialyzors but no matter if the different factors are pushing or pulling it seems to be all in the same direction. What factors are there that are pushing/pulling dialyzors to keep working?

First, to address the issue of bills. When you get bills from dialysis providers or statements from insurance companies or Medicare about payments:
– Be sure you were charged correctly and report any errors immediately to your dialysis provider.
– Look at how much the insurance company and/or Medicare considered reasonable and customary. Sometimes provider charges are much higher than what the insurance plan or Medicare allows so bills are discounted.
– Keep track of what charges have been applied to your commercial insurance’s lifetime maximum benefit and your annual out-of pocket maximum (if applicable).

Medicare has no maximum benefit. Medicare Part B pays 80% of the allowed cost for dialysis as a primary payer. If someone’s commercial insurance is exhausted, Medicare becomes the primary payer. Dependent on state regulations, patients may be able to get a Medigap plan to pay the 20% coinsurance. By the way, the Medicare allowed cost of dialysis is around $130-150/treatment plus drugs.

Medicare is proposing reducing physician fees and increasing the dialysis composite rate 15.2% (search for dialysis in the link below):

Bill wrote:

Dori do you know what the employment figures are for dialyzors in countries where insurance is not tied to work? Canada for instance.

I don’t have data on Canada, however, the Dialysis Outcomes and Patterns Study examined hemodialysis patients’ medical records for sociodemographic, treatment, clinical factors and administered functioning and well-being surveys to 7378 patients treated in the U.S., 5 European countries (France, Germany, Italy, Spain, and UK), and Japan. A study reported in 2003:
– 2406 patients in Europe: 26.8% employed; 20.0% disabled (average age 59.9)
– 2087 patients in Japan: 53.3% employed; 4.0% disabled (average age 58.4)
– 2885 patients in the US: 16.8% employed; 36.6% disabled (average age 59.6)

There were significantly fewer employed patients in the U.S. and significantly more employed patients in Japan compared with Europe. There were also significantly more disabled patients in the U.S. and significantly fewer disabled patients in Japan compared with Europe.

Dori do you know what the employment figures are for dialyzors in countries where insurance is not tied to work? Canada for instance.

I sure don’t! I don’t even know if Canada collects data on employment rates by age of dialyzors. But in the US, the modality mix is 92% in-center HD & 8% home therapies (mostly PD)–and in Canada, the mix is 66% in-center HD and 34% PD & home hemo. So, it’s likely that more Canadian patients are working, since we’ve found in the US population that work-friendly home treatments are linked with higher levels of job retention.

Hi Folks
Sorry that I posted on $ in other subject.

I’m just getting no where looking into things. I’ve called my insurance company but they don’t seem to what talk . When I get the EOB from them it just has " date of service, renal tx center( no company name) , then $ payed out. thats $1041.00 per tx but thats every things but doctors.( If I did the math right). Which looks like a good price when you take in labor , plus meds. etc.

My thinking is that the insurance thinks that he is in dialysis and there is nothing the Ins. company can do to change that and we will just go along?
And can anyone tell me where to find out If I have to drive 50 mile one way to center to get a iron shot and here two people go over my month labs, then drive 30 miles the next day to doctor office to go over the same lab report?

So the above says that medicare pays $150.00 a tx and meds are another bill? Plus doctor is another bill? What would the avg. total be for someone who has medicare as 1st payor then insuance company XYZ pays the rest?
bobeleanor :oops:

Because people’s medicine needs vary, there’s no way to say what the “average” cost is for someone with Medicare and a secondary insurance. Some people take EPO, IV iron, IV Vitamin D, etc. during dialysis and others don’t take any of these or take some of them. The average that Medicare pays per year per dialysis patient for all claims that Medicare pays, including dialysis, hospitalizations, doctors, surgeries, labs, x-rays, durable medical equipment, skilled nursing, etc. is around $64,000 with costs being less for younger people but rising as people age.

However, right now, if a clinic bills monthly, it will bill for the dialysis and medicines given during dialysis in that charge. The statement to Medicare is itemized. I haven’t seen an explanation of Medicare benefits (EOMB) for dialysis lately, but suspect that the monthly charge is listed and what Medicare allows, what Medicare pays, and what the patient (or his/her secondary insurance) owes is listed.

If you have questions about what the dialysis clinic is billing, ask to talk with the billing office. If the clinic is part of a corporation, you may have to call someone in another city to talk with them. If your clinic is an independent clinic, the billing person may be onsite or in your town. Every patient has the right to understand his/her bill for dialysis and any other healthcare provider.

Most dialysis providers have a means for those with limited income and assets who either have no other insurance or insufficient insurance to request a discounting or write-off of some or all of the amount remaining after insurance has paid (or the amount owed for the first 3 months of dialysis if someone doesn’t have insurance). If paying the dialysis bill is an issue for anyone, start with your social worker. The clinic has a financial disclosure form that they ask social workers to help patients complete to prove need.

So far as what insurance companies pay for dialysis, larger insurance companies negotiate rates with dialysis clinics. Those that are hurt the most by the high cost of dialysis are those that are too small to negotiate or employers that are self-insured and too small to negotiate. Some of the insurance companies only pay for dialysis at the major dialysis corporations because they’ve negotiated rates with them…even when some of the smaller providers would charge less. I have talked with at least one social worker who complained that her clinic charges less than the “big guys” but the insurance companies won’t contract with them. I wouldn’t be surprised if there was a trade off of exclusive contracts for lower rates. However, if one’s insurance only contracts with certain providers, this reduces freedom of choice and sometimes availability of modalities.

bobeleanor :?: