The Infinite Loop of Finger Pointing: Chemotherapy, Congress, CMS, & the CBO
posted by Eric Dishman on November 13, 2009
But let me back up a bit. After tormenting over the decision, Janice finally took early retirement three years ago from the retail company where she had worked for two decades. She could no longer muster the energy to manage her career, her disease, and the bureaucracy of coordinating her disease. Like most people, she took COBRA insurance for the first 18 months, hemorrhaging money from her savings account, until she was forced to take money from her 401k prematurely with penalties because the "hardship paperwork" was just too complicated and time-consuming for her to figure out. (Her COBRA ran out and she had to pay exorbitant dollars for a private plan because of her pre-existing condition...which was another battle...but I don't have the energy to cover that one here today.)
We spent eight months during that COBRA period faxing, phoning, and fighting a Dilbertesque battle with her insurance company and the hospital where she was being treated. Janice, on the advice from her doctor, wanted to receive two chemotherapy treatments per week through infusion in her home (costing $213 per episode) instead of having to find rides for the fifty minute pilgrimage to the hospital (costing over $2000 per episode for the same bag of IV fluids). Even though the hospital had a home health and infusion division... even though Janice's condition could safely and effectively be treated in her own home...even though it was 1/10th the cost to get that treatment at home compared to the hospital...and even though an open IV port for Janice puts her at even more risk of picking up a dangerous and expensive-to-treat infection (or now H1N1) every time she visits the hospital...the company refused to let her have treatment at home because "home care is only available to frail seniors over the age of 65." Simply put, she wasn't sick enough or old enough yet for the safer, cheaper course of treatment.
Those months were an exercise in finger-pointing futility and frustration, as each department blamed the ridiculousness of the situation (no one could argue with the fact that it was safer, cheaper, and better for Janice to receive treatment at home) on every other department, on Medicare, on state regulations, on patient privacy rules, on liability insurance, even on some obscure fire code (we never understood that one). Everyone defaulted to "no" from the start. Everyone claimed "I don't have the power to fix this problem." Everyone blamed "the system" that they were somehow absolving themselves from being a part of. Eventually, a lawyer friend of one of my co-workers got involved, we bugged the CEO of the hospital endlessly, and we convinced a doctor to convince a panel of administrators that Janice was not likely to live much longer anyway. We got approval for Janice to get chemotherapy infusion at home.
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Now it is November 2009 and healthcare reform is in the (hot) air. Janice is weeks away from the miracle of her 65th birthday, which she has been eager to celebrate for years because she can finally stop the steady flow of her 401k dollars to her private insurance plan. But a few months ago, her eagerness transformed into hopelessness. We began delving into the impenetrable maze of Medicare plans and terms, while Janice also started preparing for a big birthday bash for herself with friends and family in her
In all the moments of bad news these 10 long years--her diagnosis, the death of her husband, the advancement of her disease, the bouts of painful side effects, the battle with her private insurance company, the fight over her preexisting condition--I have never seen Janice face such despair. I think she was almost serious when she asked me to take a hammer to her knees to cripple her enough to be eligible for home based care. And she said to me only days ago something I've heard from so many seriously, chronically ill patients before: "It's not the disease I can't handle; it's the healthcare system I can't survive."
And then she sent me the following words to put verbatim into this blog: "I'm not asking for help or a hand out from anyone. I've got a good support network, and I'll figure this problem out, too, like all the others. But wake up out there! Medicare may not be the Holy Grail you are hoping for. Do your homework early and often--and well before you turn 65! Because common sense in healthcare is quite uncommon."
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So wouldn't you think Janice's predicament would be something that healthcare reform is trying to fix? Well, think again. While the ink isn't final or dry on the healthcare reform bills, so far Congress is mostly going the wrong way on home-based care for things like infusion of chemotherapy, home dialysis, getting medical durable equipment to the home, or providing home care for seniors and seriously ill chronic patients. While I've been out trying to make the case for even more home-based care using technologies for remote patient monitoring and independent living, the traditional home care industries have been under attack. Medicare is reducing reimbursement rates to the point that many small and medium-sized home care organizations will be forced out of business. The last thing I want to do is to inadvertently wipe out traditional home care as we make way for new kinds of care technologies and services in the home. We ought to be building upon that foundation and tradition instead of chipping away at it!
When home care is often cheaper, more effective, safer, and much preferred by patients, why is it under threat? I don't entirely know. In part, because of rare instances of fraud and abuse by a few bad apple home care companies, some in Congress, CMS, and the Congressional Budget Office are over-reacting...are throwing the baby out with the bathwater. In part, it is due to a false impression that quality cannot be proven and measured in home care encounters as well as it can be in clinical encounters. Other detractors use a chicken-and-egg argument that there is not enough "evidence" that home-based care works, but, when you try to get funding to create that evidence, they use the very lack of evidence as a means of not funding the studies because home care is such a small niche. And I suspect, in part, the pushback on home care is due to perversities in the system that may make it easier for plans to get reimbursed for hospital visits than home visits.
But as I, and many of my colleagues from dozens of organizations, work these issues on the Hill, there is another more troubling reason why home based care is under threat. The infinite loop of finger pointing by different government agencies means most everyone is reticent to take up the charge, even if they believe in the power and effectiveness of home care. Each Congressional committee we go to says, "Sorry, not our area of focus" and points us to another committee. While there a few exceptions, this fragmentation of responsibility and accountability occurs as you literally traverse office by office with each of them pointing you to the next door down the hallway with an implied or explicit "not my problem." And now those hallways are filled with whispers and finger-pointing to another culprit: the Congressional Budget Office, or the "CBO," for short. As one staffer put it to me, "Home care can't pass the score-ability sniff test." I've heard this refrain dozens of times--and more and more recently as the reform bills near fruition. Somehow score-ability has become more important than care-ability of patients.
I'm not an expert in federal budgets, the CBO, or CMS...but I am an expert in human behavior. And it doesn't take a social science degree to see that people--even powerful policy makers--are living in fear of the power of the CBO--as they work on healthcare reform legislation. And it doesn't take powerful observational skills to see that people--even powerful policy makers--are now scapegoating the CBO as the catch-all excuse for refusing to move forward on legislation that their constituents are advocating for. And it doesn't take an advanced degree in economics to know there is something strange afoot when an accounting organization isn't willing to comprehend the risk/reward ratio and ROI of treating someone for $200 per day at home instead of $2000 per day at a hospital. It is the infinite loop of finger-pointing by an un-interoperable government....agency by agency....department by department...committee by committee...looping from Congress to CMS to the CBO and back again...that often keeps us going nowhere.
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I may not understand all of the reasons, nuances, and history of these issues deeply enough. I probably don't. But I do understand, very deeply, that day after day people like Janice are needlessly suffering--and that we are wasting billions of healthcare dollars--because of the unquestioned bureaucracies that we all tolerate, and thus, perpetuate. There is no doubt that the majority of people in Congress, in CMS, in the CBO, and in any other government acronym you can list here, are good people doing the best they can within the positions and policies they have inherited. But there is also no doubt that good people end up doing bad things to patients when administrators or policy makers hide behind finger-pointing, that's-just-the-way-it-is, and not-my-departmentalism.
I hear lots of talk from Congressional members lately who lament that these healthcare reform bills will put bureaucrats in charge of care decisions instead of the patient making common sense decisions in consultation with his or her providers. Ask Janice and the doctor who prescribed her chemotherapy at home--and the millions of patients and doctors like them who are caught up in the infinite loops of these bureaucracies--who is really making the care decisions today. From my many perspectives--patient, patient advocate, policy advocate, researcher, innovator--we could all use a healthy dose of common sense, creative compassion, and a commitment to truly putting patients--not bureaucratic processes and procedures--first.
Meanwhile...Happy Birthday, Janice! And thanks for letting me share your story. I'll call you tomorrow to work with you some more on your insurance plan. Hang on--they're promising healthcare reform is on the way!
Comments (7)
tagged: Digital_Health, Dishman, Eric_Dishman, Healthcare_Policy, Healthcare_Reform, Health_Information_Technology, Health_Policy, Intel_Digital_Health, Intel_Health
Comments
Nov 14 | Feargal said:
This blog above all others has for some reason really made me depressed. I don't know why - maybe its because it all appears to be a hopeless cause. I feel like its the story of the valant small person getting little, precious victories against the 'system', but not getting and possibly never likely to get the big victories that will matter.
In some ways I think that the most serious problem is that the people with the money make the decisions. The US has given too much of its money to insurance companies to make decisions for them. The money needs to come back to the people who need the care to empower them to make the right decisions for themselves. We are all currently paying for this care anyway - either through payroll deductions, taxes, co-pays, product/service prices. It appears to me that the providors (doctors, hospitals, drug companies, etc) are getting a pretty small cut of the current cost of products/services, so we need to enable them to provide more care on a direct basis.
When I was at home in Ireland, we all knew the price of a Doctor's visit - EUR50. We also knew the price that other doctor's were charging and we could choose to change if we wanted. You could literally walk into the Doctor's surgery and either wait in line, or make an appointment. Most doctors operate as sole traders.
Similarly, when we were having our children, we rang around and found out what various gynocologists offered and charged and made our decision based on that. There were no questions on insurance companies - you might have insurance, but it was not a requirement and most people didn't.
Now, there are many other problems with the Irish Health service - access was and is a problem as there just are not enough specialists and there is not enough MRI equipment, etc (nice biz opportunity?). The main reason for all of this is that the Insurance part of Healthcare in Ireland is pretty limited for most people and for most Healthcare issues. It is not better than the US, but it does have characteristics that are worth looking at.
I will freely admit that this still leaves people unable to afford Healthcare, so let the government look after that problem, not the 99% problem they are currently looking at.
Nov 16 | Russ Bodoff said:
Eric thank you for calling attention to the terrible challenge that Janice faces. Unfortunately she is not alone as I hear similar stories every day from home infusion pharmacists and nurses about Medicare patients who are being denied the opportunity to follow their physician’s guidance and have their infusion therapy given in the home. Currently Medicare will only provide reimbursement for the services, equipment and supplies associated with home infusion if the therapy is provided in a hospital, skilled nursing facility or outpatient hospital clinic. Currently almost all private insurance companies, Medicare Advantage, the VA, TRICARE, the Federal insurance program that all members of Congress are eligible for and most state Medicaid programs provide reimbursement for home infusion therapy when recommended by the physician. They do so because home infusion saves money and provides high level of quality care a win win for the patient and the healthcare system. The care in the hospital or nursing home can run three to ten times the cost of home infusion therapy. While hospital outpatient clinic costs are in line with home infusion costs, many of the Medicare patients needing treatment are too sick or have no transportation to get to the clinic on a daily basis. Many infused medications are given multiple times during the day which further complicates the ability to use the hospital outpatient clinic. While placing Medicare patients in a hospital or nursing home when not needed adds billions of dollars to our national healthcare bill, it also places these Medicare patients, many who have reduced immune systems and an opening in their body for a port or picc line at great risk for MRSA or other deadly hospital based infections. The obvious question is why. Is this an example of healthcare insanity at its worse?
Eric you try to identify why there is this problem. You mention Congress, the Congressional budget Office (CBO) and the Center s for Medicare & Medicaid Services (CMS). I would add the Administration to the equation also. For years CMS, which oversees Medicare, has stated that there needs to be a Medicare home infusion benefit as Medicare Part D does not provide an appropriate home infusion benefit. However CMS indicated it could only happen with a legislative fix. Now there is a proposed legislative fix (S.254 and H.R. 574 the Medicare Home Infusion Therapy Coverage Act of 2009) that has 100 House co-sponsors and 29 Senate co-sponsors. The legislation is supported by physicians, nurses, pharmacists, and patient advocacy groups like the American Diabetes Association and the Multiple Sclerosis Foundation among others.
When we take a step back and analyze the problem we see there are no villains. Members of Congress and the staff who work for them, the CBO, CMS and the Administration work long hours and are dedicated to their jobs and their country. However they have made one major error. They have allowed process and procedures to outweigh the patient as an individual and what is best for the patient. Policy and procedures often become more important than the patient the policies are supposed to help. One must ask how we can ever have true healthcare reform if we are not able to fix easily identifiable problems in the healthcare delivery system. One answer is it is easy to pass the buck. Members of Congress say we can’t move legislation without a CBO score. The CBO says we can’t score the legislation because the data they need in the format they want has never been collected. The Administration says they cannot influence the CBO only Congress can and CMS indicates that changing reimbursement models can take years to evaluate and adjust operating procedures. No one has to take responsibility and everyone involved can pass the buck. Can anyone imagine a well run company acting like that. It should not take economic experts to figure out that every single patient that can be treated in the home away from the expense of the hospital or nursing home represents a savings. Why does Medicare have a policy that contradicts the physician’s advice, adds significant costs to our healthcare system and places Medicare patients in a difficult, uncomfortable and sometimes dangerous environment? We all recognize the faults of private pay insurance companies but most of them get it. They know if quality healthcare can be provided in the home at less costs then it makes sense to do it. When private insurance companies are taking better care of a patient then Medicare at lower costs, more questions need to be asked.
The tens of thousands of elderly or disabled Medicare patients adversely being impacted by these illogical decisions may never get relief if their story is not told. Eric thanks for highlighting Janice’s story. Maybe the only way we will bring sanity to the healthcare delivery systems is by continuing to highlight and tell the patient story. On yesterday’s CNN State of the Union Sunday talk show David Axelrod, White House Senior Advisor, said the President does not want people to suffer and we need to fix healthcare problems today. I guess I am left wondering how Janice would respond to that statement.
Nov 16 | Grace Sierhio said:
Like Eric, I have seen so many family members and patients affected by the lack of coverage for home intravenous therapy services. I am a registered nurse from Florida, and have seen many of our frail elders placed in nursing homes or readmitted to the hospital when, for a fraction of the cost, a nurse could have visited the home to administer medications. Many times the patient or family can be taught to infuse the medication. I continue to hope that common sense and wisdom will somehow prevail, and the result would be this very logical coverage as part of our health care reform.
Nov 16 | Neil Wohlford said:
As a home infusion provider, I can attest and agree that this is a common problem with far too frequent occurrence. The healthcare system must begin to address its woes by solving problems with right solutions and not by choosing easy solutions that don't address the problems.
Nov 16 | Logan Davis said:
Hi Eric,
I'm a pharmacist at a home infusion pharmacy and I greatly appreciate your articulation of the madness that is the lack of Medicare home infusion coverage. I am actively advocating for common-sense solutions like home infusion and others to solve these problems that increase cost of care while decreasing quality. Thanks for jumping in the mix and bringing this important issue to light. For the sake of my patients I hope that home infusion becomes a reality for our seniors on Medicare. It is one the most disheartening conversations to tell a patient that they can't get home infusion because they have Medicare...
Thanks,
Logan
Nov 19 | Eric Dishman said:
Thanks to all of your for your comments and elaboration on these issues. The problems sound worse than even I realized. Feargal, I agree it's hard not to be depressed on this one. This seems like such a trivial, common sense fix, and if we can't make health reform fix small things like this, how in the world do we tackle much more complex problems? Perhaps we are ignoring the simple fixes on the way to aiming for the perfect healthcare reform bill, but are at risk of accomplishing very little as a result. Andy Grove used to say to me frequently: "don't let the better be the enemy of the good." Let's do some simple good with these reforms...and not get lost in the utopian hunt for the elusive "better."
Dec 07 | Yoav Freund said:
Dear Eric,
While I agree that the picture for care at home is depressing, I doubt very much that the solution for the short term will come from the government. See global warming, see the state of the education system etc. etc.
I am more hopeful about individuals and companies trying to make a profit by selling services and products to solve this problem. Does Intel see an apportunity here? How about home nursing organizations? Can they leverage technology to become more affordable and competitive? How about consumer electronics? What about a TV add-on that allows the elderly person to have a video conference with his kids or his doctor without knowing how to use a computer?
Yoav Freund
Professor of computer science
UCSD