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..