I'm a healthcare attorney....

[theboss]

I've more or less stayed clear of the whole Andy thing. I don't know Andy aside from a few conversations on here. I hope he is well and gets better. I did talk to somebody at the beginning of all this about the procedure just so I could see what the Medicare rates were for a Whipple Procedure - mainly because the numbers getting thrown around were staggering. I found out that since the procedure is considered experimental, there were no set rates. So I withdrew.

I don't know what's going on now or why Will chose this forum to vent and speculate. If he and Andy are such close friends that they have stayed in each other's homes, one would think that they could have a conversation.

Anyway, the Andy situation did raise some concerns with me from the beginning but I didn't want to jump in then and damage any fundraising. But I think this does provide an opportunity to plan for the future, especially since I was amazed at how many people gave money based on posts on a message board.

Here are my thoughts on what I would think the DU should do next time:

1. In the future, if DU does a medical fund drive, there needs to be a way to confirm the exact nature of the medical crisis, the timeframe involved, and the precise money needed. The person or guardian of the person in crisis needs to sign a HIPAA release which would allow their medical history and bills to be made public immediately. There are steps to protect the person's privacy obviously, but asking for funds pretty much opens yourself up to scrutiny in the first place.

2. The monies need to go to something other than a Paypal account. I trust Paypal and to some degrees, I suppose, I trust Andy and his friends here. But I find it somewhat staggering that $50,000.00 was simply handed to someone. I am by no means implying that this is the case, but in the future, someone could raise this kind of money and fly to the South of France or something. I would prefer some sort of trust be set up and managed by a trustworthy third party.

At the time of the fundraising, time seemed of the essence. But I am not sure that was really the case. For a few extra dollars, an attorney could have been hired to set this up.

3. Someone needs to negotiate with the hospital. I know this industry and understand that hospitals are now in the business of balancing their budgets on the backs of the uninsured. (And we could have a long discussion on this if anyone is interested). But I still find it rather amazing that a dying man needs a $50,000.00 surgery to live and the hospital is demanding payment in full up front. That is simply not my experience as to how these things get done.

The reason I wanted the type of surgery was to see what Medicare would pay if Andy were covered. As I said, it turns out that Medicare does not have a rate for this. And neither did some of the HMOs I investigated. (It's "experimental," which is yet another discussion for another time). I've negotiated payment plans in the past where an uninsured patient agrees to pay 150 percent of the Medicare rate or 125 percent of the UHC rate. And I've been able to set up these plans over a period of months and years.

I'm still a little stunned that Johns Hopkins would behave like extortionists.

4. There needs to be some sort of forum set up to discuss this specifically. Or we end up with dozens of threads clogging the site.

I am sure I am missing some thoughts, but this whole episode has been remarkable to view from a distance. And I am not passing judgment on anyone. Hopefully, we can all learn from this.

[supernova]

1. These are very helpful suggestions, theboss

And I do agree with you that we can do better next time, because this was such a spur of the moment thing.

[Cleita]

2. Good suggestions and I wondered why a trust was

not set up to collect the funds too.

[Dogmudgeon]

3. You should formally contact the Admins

I think they were blindsided by this, but it's the kind of FUBAR that the happens in medical problems way too often.

Drop Skinner or Elad a line if you think you can help ... I'm sure they'll appreciate thought, and probably input as well.

--p!

[mcar]

4. Thanks for these ideas

I've been in healthcare and hospital public relations and marketing for 10+ years and I really wondered about a hospital demanding payment up front for life saving surgery, especially if it was experimental.

I'm not casting aspersions here, just agreeing that his episode has been remarkable.

[sandnsea]

5. Hospitals have social workers

Who can coordinate fundraising and other services.

Medicare is for disabled and seniors and has different rules than Medicaid. Medicaid rules vary from state to state.

Alot of "fraternal" organizations offer a health insurance benefit. If there's a health insurance agent here, they could make a hefty commission if they could figure out how to set up a separate group and find us a good group rate. I don't know why progressive groups don't just get together and do this. A nonprofit, sliding fee scale, with some fundraising to cover the gaps.

[theboss]

9. The reason I looked up Medicare rates...

Is because they are constant and serve as the basis of many contracts between hospitals and payers. It's a good starting off point for negotiations. And it's a lot easier than Medicaid.

[sandnsea]

16. I understand

But because of this particular situation, it's very important to understand what the exact details are.

[ultraist]

6. excellent suggestions

In response to your HIPAA form suggestion, someone else also suggested this on the other thread, (I believe he/she is a doctor).

A simple HIPAA form granting permission to someone to verify the diagnosis is in order, prior to conducting a fundraiser. It seems to me that Skinner would be the one to request this if he allows fundraising to be conducted on his site. (Posting documents doesn't really mean anything. Anyone can type up a doc that looks official).
Verifying someone is a patient, does not provide adequate info. A diagnosis verification is what was needed from the get go.

Personally, I think DU has a great potential to raise funds for worthy causes. If it is handled in a professional manner, it could be a very effective tool.

[MuseRider]

7. One question.

Are you certain that the Whipple proceedure is considered experimental? They were doing them when I was still nursing and that was 20 years ago. That really surprised me.

I also have concerns about this whole thing but certainly trust Andy the those who have been helping him so that isn't my concern. I am just stunned and surprised at what medicine has become, I shouldn't be but there it is.

You make some really good points.

[theboss]

12. I am 99 percent sure it is experimental

I could find nothing about in the Medicare tables. And I located a memo from Aetna where it was labeled experimental:

"Aetna considers pancreaticoduodenectomy (Whipple resection or proximal pancreatectomy) experimental and investigational for the treatment of members with Zollinger-Ellison syndrome. The value of pancreaticoduodenectomy in this condition remains to be established. The morbidity and mortality related to this approach may outweigh its potential benefits."

http://www.aetna.com/cpb/data/CPBA0365.html

[MuseRider]

14. Thanks.

Now I understand why!

[ultraist]

20. Maybe it's experimental not because it's new, but because it's rare

And because it didn't have high success rates across the board. John Hopkins does have the best surgeons for this procedure. As you probably know, treatments must have certain success rates before they are no longer considered "experimental."

Snip from John Hopkins site:
http://pathology2.jhu.edu/pancreas/surgicaltx.cfm

Pancreatic cancer is the fourth leading cause of cancer death in the United States. Recent data from the National Cancer Database indicate that pancreaticoduodenectomy (the Whipple procedure: designed to remove the head, neck and uncinate process of the pancreas as well as the majority of the duodenum) is the most commonly performed cancer-directed operation for pancreatic cancer, although it is used in only 9% of patients.

In the April 11, 2002 issue of the New England Journal of Medicine, Dr. Birkmeyer and colleagues from Department of Veterans Affairs, Vermont, report their analysis of surgical mortality in the United States (N Engl J Med 2002 Apr 11;346(15):1128-37). Using information from the national Medicare claims database and the Nationwide Inpatient Sample they examined the relationship between hospital volume (total number of procedures performed each year) and mortality (death in hospital or within 30 days) for a variety of surgical procedures...

Is it possible it's not "experimental" but was looked up under the common name and not "pancreaticoduodenectomy?"

[undeterred]

24. I know someone who had a Whipple operation at the University

of Chicago Hospital in 1981. The procedure has been perfomred at teaching hospitals for a long time.

[MuseRider]

27. I understood it

but thanks.

[Horse with no Name]

86. I know I have taken care of patients that had this done

that were on Medicare.
But if I am not mistaken it is because it is approved on a case by case judgement to make sure the benefit outweighs the risk of the surgery for that particular patient.
That would be why it isn't listed on the database.

[patcox2]

21. Its experimental for treating zollinger-ellison, not cancer.

Big distinction. Zollinger Ellison syndrome is a chronic disease, not at acute disease that kills quickly like pancreatic cancer, and it is treatable with drugs. Thats why an insurance company might consider the whipple experimental for this one disease, because its frankly not necessary for that disease.

It is not experimental for cancer. Medicare apparently does pay for it.

[ultraist]

22. experimental for Zollinger-Ellison syndrome, not pancreatic cancer

That doesn't mean it's considered "experimental" for pancreatic cancer

[theboss]

26. If you can find where Medicare pays for it, let me know

I didn't exactly spend a lot of time on this and may have been using the wrong DRG. (And our Medicare expert was in California that day).

I would be curious to know the Mediare rates, if they exist.

[ultraist]

34. Indirect info that Medicare pays for it

Using information from the Medicare claims database, we performed a national cohort study of 7229 Medicare patients more than 65 years old undergoing pancreaticoduodenectomy between 1992 and 1995.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=10076608&dopt=Abstract

[theboss]

36. "Medicare patients" may just be a classification

If I went in for an eyelift, I could be classified as an "Anthem" patient, but it does not mean that Anthem pays.

[patcox2]

40. No, it refers to medicare claims.

There is no question about it, its covered by medicare, and further, it is performed, in high volume, at hundreds of hospitals, its not rare at all.

[theboss]

44. It very well could be paid by Medicare..don't get pissy

I may have been using the wrong code. But no one has shown me a rate schedule yet.

[ultraist]

48. It is rare for pancreatic cancer patients, only 9% recieve it

I posted this info above from the John Hopkins site. It cites the 9%. The success rates vary widely from hospital to hospital. JH has the best success rates for this surgery. Google it

[patcox2]

52. Whats "success rate?" Long term mortality? Operative?

I have read the study which found that operative mortality is much higher at low volume hospitals than high volume hospitals. That refers only to death during or immediately after surgery.

I have not seen a study indicating Johns Hopkins patients live longer after the surgery. Its hard to do such studies because the specialist and research hospitals like JH often treat more severe cases, so they will actually have statistics that look worse. 80% of people who have the surgery on average die within 5 years.

Lucky for Andy, he had a hospital which is considered "high volume" for whipples right in Seattle, they perform over 60 per year with a 0% operative mortality rate. Google it, you can learn a lot. And he wouldn't have had to ask for money, because he'd have gotten the treatment despite being uninsured.

I think there is a big difference between saying "I need money or I will die" and saying "I need money to get treatment at this hospital which I prefer, even though I could get the treatment without having to ask you for money at this other hospital over here." There is undoubtedly and undebateably a difference. A big difference.

[ultraist]

55. I was referring to success rates for the procedure

I linked a study above as well as a study cited on the JH site in another post here. As I noted in another post, JH has much better success rates than other hospitals.

from JH site I linked:

In contrast to these national figures, specialized centers have reported decreasing operative mortality rates and improving long-term survival rates after pancreaticoduodenectomy for pancreatic cancer. For example, the five-year survival rate for patients treated surgically at Johns Hopkins now exceeds 20%. Many factors are likely to be responsible for the improving safety of pancreaticoduodenal resection, including improvements in intensive and critical care, improved surgical experience with decreases in operative time and less need for blood replacement, and regionalization of patient care to specialized "Centers of Excellence," such as Johns Hopkins.

[patcox2]

58. Virginia Mason Hospital in Seattle claims the highest success rates.

This would be from the website of virginia mason hospital in seattle:


"Now, new imaging and treatment options are bringing new hope to pancreatic cancer patients and their families. A dynamic team, including hematologist Vincent J. Picozzi, Jr., M.D., and surgeon L. William Traverso, M.D., F.A.C.S., has helped earn Virginia Mason the highest survival rate worldwide for pancreatic cancer patients who undergo a special surgery procedure, followed by chemotherapy and radiation therapy.

The Whipple procedure
The most common surgery for pancreas cancer has traditionally been the Whipple procedure, named for surgeon A. O. Whipple, M.D., who developed the technique in 1935. It’s a complex surgery taking six to eight hours to perform. When the Whipple procedure was first described, the operation involved removing the right side of the pancreas, the small intestine (duodenum) and half of the stomach as well as the pylorus, a valve between the stomach and the duodenum. However, removing this valve causes stomach acid to leak into the small intestine and cause ulcers."

[patcox2]

59. And they take medicare and medicaid!

astonishing.

[bicentennial_baby]

61. Is it just me?

or do you seem to have a beef about this situation? Why don't you just come right out and say it?

[patcox2]

68. Well, I am perhaps overly sensitive to the distinction

between need, and preference. Of course, everyone in the world would of course prefer to be treated at the best hospital. But thats impossible, because Johns Hopkins doesn't have enough room for everyone in the world.

So, yes, I think one can legitimately question whether it is appropriate for someone who has treatment available elsewhere, for which that person would not have to make a public appeal for charity, to instead make a public appeal for charity to to go to the hospital of his or her preference.

There is no fact question here, its a matter of judgment. In my judgment, its not appropriate unless clearly explained to prospective donors. Something like this "My local hospital, which does a lot of these procedures and claims to have the highest success rate in the world, would treat me even though I have no insurance, but I prefer instead to ask you all for money so I can go to another hospital which I prefer."

I know it takes away from the emotional appeal, but its more accurate.

[theboss]

69. Is that really the case?

That's a pretty strong accusation.

Though - to get back on track - it shows the need to have something in place in the future so we know what's going on.

[patcox2]

71. Can't be sure.

But seems to be, if you even read the appeals closely, they are pretty carefully worded. "Johns Hopkins is The place to get this done" is a phrase that stands out. Another of the threads said "its a rare procedure and only performed in a few hospitals," which is out and out false. But really, there is next to nothing I could find anywhere in this drive explaining why it HAD to be johns hopkins, as opposed to that it was preferrable that it be johns hopkins.

These are facts: most hospitals will treat people who have no insurance. Medicare and medicaid cover the treatment. Johns Hopkins has a reputation as the best, but as the johns hopkins spokesman said, they will not treat uninsured people from outside the baltimore area because they give preference to people from their local community. All very straightforward, undeniable.

[sandnsea]

90. It could be

That's why I said different states have different Medicaid rules, I don't know what Washington's actually are for that surgery.

[ultraist]

79. Success rates for the procedure or long term for pancreatic cancer?

Two very different things. Your excerpt states "survival rate...who undergo surgery, chemo and radiation." That is not the same as success rate for the procedure alone. Did you check out the JH link I posted?

[Laurab]

92. I'm having a hard time understanding

why this is being beaten like a dead horse. If you followed the discussions from the beginning, you knew that andy didn't HAVE to go to JH, but that people who seemed to know a bit about his situation, and about JH, felt that was the best place for him. The really simple part is - if you had a problem with that, you don't donate. Problem solved.

A 0% operative mortality rate is great, but I think most people would like to have the best chance to live AFTER the operation, too.

I never took it as "I need money or I will die" - I took it as getting the best care possible. I DO admit to taking other people's word for that, but that too was my choice. It's a simple thing, really - if you don't want to donate, don't do it. Why ruin the good feelings of all the people who did want to donate and ensure that someone gets (what many consider to be) the best care possible?

[Stephanie]

94. you said it well

[question everything]

111. Because some of us used the information posted here to email

our friends who are not DUers.

Like most, I do not regret donating. But if the situation was exaggerated - and I really do not know - I would feel weird about approaching these individuals again. And I can see why Will Pitt was so incensed. Since his pleas had very wide distribution and since, as he said, he has another close friend who also could use some help.

And, yes, I did link to Will Pitt's webpage - the PDA - in my private emails. And it seems that many in the liberal community - like on Air America - carried this plea to help Andy further. If it comes to the fact that the need was exaggerated, they, too, may think twice about lending their voice.

[seventythree]

30. heads up

"for the treatment of members with Zollinger-Ellison syndrome" -- don't know what that is, but there's a qualifier you are missing here, counselor
edit, punctuation

[kath]

91. Whipple is NOT experimental for pancreatic CA or bile duct tumors --

it's been done for years and years! The site you linked said the ins. co. considered the Whipple procedure experimental for the treatment of ZOLLINGER-ELLISON SYNDROME - an entirely different disorder.

[patcox2]

18. Well, there are published studies on whipple mortality based on medicare.

Medicare information was the basis for some whipple mortality studies I looked up, I assume that means whipple procedures are paid by medicare. I also found a Seattle hospital that does over 60 whipples a year and has a 0% operative mortality rate, imagine that.

[ultraist]

23. LOL!

We seem to have been on the same page with our posts! I didn't see yours before I posted mine.

I agree, it's experimental for that particular syndrome, but not for pancreatic cancer and Medicare does pay for it.

[MuseRider]

29. 0%

really? That is remarkable. Do you know if that was just attributable to the immediate post op and the surgery or did that include the cancer it was used to cure for several years post op?

I am not certain if that made any sense. LOL. I have been away from this for a while now.

[patcox2]

39. Thats surgical mortality.

But the study was about differences in surgical mortality based on the number of procedures the hospital performs each year. The study defined a low volume hospital as one which performs fewer than 16 whipples a year.The hospital in Seattle does over 60, a very high number. Its simply untrue that this procedure is rare and can only be performed in a few hospitals, thats for sure.

[MuseRider]

45. I was very skeptical of that

myself but in Andy's case there were other reasons I think. I stayed mostly out of it.

So that mortality rate did not consider the actual mortality of the cancer it was used for. I wonder how that was? I guess that would be difficult to figure since there are so many variables.

Thanks.

[Modem Butterfly]

57. If I were that sick, and there was a hospital that good in town...

...I would rather have the procedure there than fly clear across country...

[Horse with no Name]

88. What is the difference in the

morbidity and mortality rates for each hospital and what method are they utilizing?
I know that some centers are experimenting with a laparoscopic variation of the Whipple which would have a much lower incidence of the postoperative complications than the open surgery for qualified candidates and a much shorter recovery time.
I was under the assumption that JH was chosen because they were doing a variation of the surgery that had better success than the traditional surgery.
After all--a patient living with terrible complications from a surgery looks good on paper and in advertising, but in reality you want a hospital with comparable morbidity/mortality statistics.

[seventythree]

37. You don't say!!!!

and according to GreatAunt, Andy was approved for Medicaid in Washington, with 3 months retroactivity to cover those initial bills for which they were fundraising.

[patcox2]

42. Is "preference" the same as "need?"

I mean, really, is it the same?

[Czolgosz]

8. When you say you're a healthcare attorney, are you on the side of patients

or on the side of HMOs?

Just curious.

[theboss]

13. I work for hospitals and pursue carriers for payment

I consider myself a "good guy" because I hold HMOs to the fire and keep hospitals in business. I have never pursued a patient for payment directly and couldn't do that.

I do have one unpleasant task. I do determine when a patient is likely to be responsible though. It's up to the hospital to proceed from there if they will pursue payment or not.

[Czolgosz]

17. Thanks. I was just curious. Is there much talk of medical malpractice

lawsuit legislation where you practice?

[theboss]

19. Not really; we don't do that type of work.

I mean, we talk about tort reform and are largely against it. But I don't think it will impact our work very much. We work with business offices, not doctors.

[Czolgosz]

46. I was curious because we has a big round of lawsuit legislation here in

Texas and now, two years later, the hospitals are being killed by their shrinking Medicare/Medicaid reimbursements and it seems as if they really picked the wrong battle when they went to was on patients' rights.

[theboss]

50. It's two separate issues really

Doctors are more concerned with malpractice insurance; hospitals are more concerned with reimbursement. I work with hospitals, not doctors.

[crispini]

10. Well thought out post.

Minor quibble; you write: "Here are my thoughts on what I would think the DU should do next time." It's important to point out that this fund drive was not done by DU itself -- it was done by posters ON DU, on behalf of another poster.

But other than that, great post.

[theboss]

15. I know, but I was writing in shorthand...

DU did let their boards be used for the fundraising though, which I think means that the admins have a certain level of responsibility.

[KT2000]

11. good plan and adopting

something like this would prevent the consternation that takes away from the effort. Also would be less vulnerable to freep attacks.

loved the line: "hospitals are now in the business of balancing their budgets on the backs of the uninsured." Just about to visit a lawyer myself to see if there is a way to protect my house from the local hospital should I end up there unconscious or something. This country really suck$$$.

[suziedemocrat]

25. Excellent Post! I'd like to know more about hospitals using non-insured

to balance their budgets. I'm sure you are someone with great insight into the problems with the current health care industry. If you ever have the time, it would be great if you would also post "suggestions" for how to improve our health care situation. I'm doubtful we will ever have full-coverage universal health care in this country if no major changes are made to the health care system - just too much money. Personally - I'd like the consumer/patient to be more involved and responsible for their health care. I'd also like some sort of universal "catastrophic" health care coverage.

In Wired magazine, http://www.wired.com/wired/archive/13.05/view.html?pg=5, Bruce Sterling gave us some suggestions:

- Medical tourism takes off. US patients travel out of the country for everything short of visits to the emergency room. Offshore docs offer medical services that are faster, cheaper, and safer than anything available at home, obviating US doctors, clinics, pharmacies, insurers, and the federal government - just about everyone.
How likely is this? Medical tourism is already in full swing. Thailand is the golden shore for wealthy, sickly Asians and Australians. Fashionable Europeans head to South Africa for embarrassing plastic surgery. Crowds of scrip-waving Americans buy prescription drugs in Canada and Mexico.

- Alternative medicine gets serious. Health food stores move out of the feel-good biz and focus on efficacy and marketing. Vitamin shops partner with massage therapists, acupuncturists, herbalists, dietitians, and physical trainers. Upscale operations collaborate with paramedics, nurse practitioners, and midwives. Together, they pluck the low-hanging fruit - casual doctor visits and innocuous prescription medicines.
Could it happen? Alt.med storefronts are everywhere, primed for walk-in traffic. Their customers have never trusted the medical establishment anyway.

- Diagnostix "R" Us. Newfangled clinics offer a galaxy of cheap, simple diagnostic tests that show people what's going on in their own bodies. Counselors dispense information, support, interpretation, and follow-up advice. Under attack from an effective populist alternative, the absurdly expensive, often unnecessary lab-test machine withers.
This disruption is well under way. Over-the-counter tests now cover pregnancy, cholesterol, blood glucose, blood pressure, AIDS, narcotics use, and pollutant load. Meanwhile, walk-in imaging clinics offer MRI and CT full-body screening for the masses. It wouldn't take a genius to tear off this chunk of the medical complex and commoditize it.

[theboss]

31. The main problem is adminstiration in my opinion.

If you, Angelina Jolie, Robert Byrd, my dad, your favorite cousin, some homeless guy, Shaquille O'Neal, some kid just home from Iraq and I all went to Hospital X on the same day and all received treatment Y.....the hospital will likely receive a different payment amount from each of us.

There is the billed amount. There are rates for Medicare. There are rates for Medicaid. There are rates for each individual insurance plan.

The billed amount may be $6,000.00.
Medicaid may pay $750.00 in 30 days, leaving no patient responsibility.
Medicare may pay $850.00 in 25 days, leaving no patient responsibility.
Tricare (the army payer) may pay $825.00 after a year of haggling leaving no patient responsibility.
My PPO may pay $1750 in 35 days leaving me with a balance of $500.00.
Your HMO may pay $1,650.00 in 45 days leaving you a balance of $250.00.
The Screen Actors Guild Group Plan may pay $2550.00 in 100 days leaving the lovely Angelina no payment to make.
The NBA player association group plan may pay $3,000.00 in 150 days, leaving Shaq nothing to pay.
My dad's state-funded plan may pay $1400.00 leaving nothing to him to pay.

These are all based either on federal law, state law, or individual contracts. And you need someone in the hospital to determine if each paid correctly and on time. If the claim did not pay on time, late fees may be due. And that's before you need someone to verify the benefits at one number, authorize the treatment at a second number, and submit the bill. That's a lot of money on time, paperwork, and training.

And...here's the punchline....the uninsured homeless guy.....he owes the full $6,000.00 and the bill is sent directly to him.

Good times, huh?

[seventythree]

41. excellent explanation -- bookmarking

[ewagner]

51. What you write is true

My wife works in the industry and runs into this every day....

You explained it well. I hope it enlightens others here....

btw: Let me add one item to your suggestions for future fund raising drives....there needs to be something resembling a committee to do "due dilligence". Determine the person is who they say they are and that the situation is "as described".......

[Enraged_Ape]

62. What a great, concise summary of the whole nasty situation

Do you mind if I send that to some friends who really need to know?

[theboss]

66. Go right ahead

There are about fifty attorneys here and we almost all believe that every if every member of the House worked here for a month, we would have National Health Insurance.

Of course, I would be out of a job.

[Texasgal]

28. Hey Boss...

Just Curious, do you have a CPT code or an icd-9 code for the whipple procedure.... I am an RN, and I have direct computer access to all of Medicares codes, state wide.

[theboss]

33. The ICD-9 Code I was using is 52.7

I could be wrong, though. I'm not a coder and usually get help for this.

[Texasgal]

35. Hmm.. okay..

I'm gonna check that out.

[grasswire]

43. here's the description

52.7 Radical pancreaticoduodenectomy
One-stage pancreaticoduodenal resection with choledochojejunal anastomosis, pancreaticojejunal anastomosis, and gastrojejunostomy
Two-stage pancreaticoduodenal resection (first stage) (second stage)
Radical resection of the pancreas
Whipple procedure

Excludes:
radical subtotal pancreatectomy (52.53)

[theboss]

47. Yes..I used CodeManger too

Still need to find a Medicare rate...though I think this whole thread has gotten sidetracked.

[Enraged_Ape]

63. You have the same coding book I do

And that's exactly what it says.

[Warpy]

32. First, payment up front is often demanded for elective surgeries.

By "elective," for folks who don't know medical jargon, it means a surgery which can be lifesaving but which can be scheduled in advance quite safely. Emergent surgery, which is one a patient will die rather quickly without, is done without payment being raised up front. Arbitration of the fee in both cases can result in a substantial reduction, and should always be done.

Yes, the hospitals attempt to extort exorbitant overpayment from sick people. It's the cruelest form of cost shifting we have ever seen in this country, and without arbitration, hospitals have been known to seize property and garnish wages to be paid, even when the wages are below subsistence. They've also thrown people into jail for late payments or missing payments for ER services rendered.

The more you know about the incredibly fractured, unfair, and often lethal health care system, the angrier you should become. Even if you have insurance, you're one offshored job or one chronic illness away from losing it forever. Even if you have insurance, those deductibles and copays mount up quickly in serious illness, and you can find yourself bankrupt just from them.

Some freedom we have, folks, the freedom of choice to lose everything or to be neglected to death.

[Born_A_Truman]

81. Jail?

Is there still a debtor's prison? What states jail you for non payment of medical bills?

[Modem Butterfly]

106. No, there's not

No one goes to jail for missed medical payments unless they rob a bank to get the money to pay.

Medical debt is bad enough without exaggeration.

[RobinA]

104. Just a Note

with respect to hospitals and some of their procedures. Hospitals have bills too, and they have to be paid. Reimbursement rates are set by insurance companies and don't have a lot to do with how much a procedure actually costs. They are normally far lower. In order to stay in business, hospitals have to collect money where they can. They have been sort of forced into the position of going after uninsured and cash patients because they contractually can't go after insurance ones they have agreed to a rate.

I have a physician in my family and some time ago he ran a spread sheet on mammogram billings. His finding was that the hospital ultimately collected 50% of what they actually billed for mammograms over the course of a year. And this is a relatively low-cost procedure. I would suspect that since he ran this about 15 years ago, the collection rate is much lower now.

I certainly agree that it isn't fair that cash payors get slammed by this. However, at this point it's the path of least resistance. I think if you want to get to the root of this problem, look at what entity in the whole equation is actually making money. It ain't hospitals.

[theboss]

107. I would say much lower now.

I just pulled a random contract for a random facility that I work with. The fixed rate for mammograms in 2004 is $74.00.

[Stinky The Clown]

38. Hopkins .......

I posted earlier about Hopkins .... not being the hobgoblin they were painted early on. Yes, they're a large corporation. Yes they have 'rules'. Yes, they're a massive bureaucracy. (Here's a trivia question: Who has the third largest 'police force' in Maryland? Hopkins' security force. <true as of 1980 ... may no longer be true> )

But they also do a lot of good ... medical and otherwise. But the key factor as it relates to all this may be the fact that, by their charter, they're required to give preference to Maryland residents in every sort of matter. As Andy flew to Maryland specifically for this procedure, he may have run into some roadblocks by that very fact.

I have no idea if this is true or not, but in my mind this is a complicated issue and there are no clear villains.

[theboss]

49. I fully agree

What I found about the whole thing was the sense of urgency and the idea that it was $50,000.00 with no room to negotiate at all.

I'm suggesting some ways to avoid this madness in the future.

[Maat]

53. Hi!

I'm a recent law grad (and a 46-year-old married ma who had nothing better to do than go back to law school - just kidding). I know that your suggestions make sense.

My question is ... does it take a long time to have an attorney set up a trust fund of this nature (I don't belief it does)? It would cost too.

[theboss]

54. Not my area of expertise....but I don't think so

And when you can raise $50,000.00 in a few days, I don't see how an extra grand or two to do it right is a problem.

[Maat]

56. Your point is well-taken.

It's just that my Wills professor talked about $10,000 to do a will/trust. That's fine and dandy for Donald Trump, but not workable for most people.

If it is the same for a simple trust fund, it would be impractical.

However, a couple of grand would probably be very doable.

[ultraist]

60. No, it does not take long

We have set up numerous LLCs for our real estate investment business. A simple trust or LLC can be done in a matter of days. Now, if you are looking to set up a more complex trust with a big estate, yes, that can take much longer. For instance, a partner of ours set up a FLP with certain amounts of money to be gifted each year, special loopholes to avoid inheritance taxes, a cash trust for his wife that rolls over to his children upon her death, several heirs, etc, but basic trust or LLCs are simple. In my area, they do cost around 2k in attorney's fees and we have a regular real estate attorney we've used for years.

BTW, the FLP and estate plan cost around 30k to set up but it did save his children 1 Million in inheritance taxes, literally.

Sorry to get sidetracked! LOL!

I don't think a trust is neccessary. An individual can be gifted up to a certain amount per year, per donor, and not be taxed. I'm not familiar with the legalities of fundraising though, so I may well be mistaken here.

[theboss]

64. That's a great point I forgot to consider

What is Andy's tax responsibility on this $50,000.00. As I recall from 2L, "Income is income from any source derived."

This is income.

Can he take a deduction on a large portion of it?

[grasswire]

70. I have been concerned, too...

....about what the gift might do to any eligibility for charitable care he might be able to arrange. Don't most of the funded programs require an accounting of all monies received recently?

[ultraist]

75. There are tax deductions for large, uninsured medical expenses

All income does have to be declared though including donations/gifts.

For donors, gifts under 11k are exempt. http://www.irs.gov/instructions/i709/ch01.html#d0e419

[theboss]

77. Thanks....my mind went blank

I forgot that you can deduct medical expenses so everything should even out. But he should still get an accountant.

Once again...back to the main point....this should have been better organized. Especially if speed was really not of the essence.

[Ms. Toad]

85. It is the donor who has to declare the gift,

Not the recipient. Gifts are not income, for tax purposes (although gifts may impact the ability of the donee to be eligible for federal aid programs or charitable programs).

Each individual gift of more than 11K made within a single year to a single individual has to be declared by the donor on form 709 for the tax year in which the gift is made. Those reported gifts plus the amount in the donor's estate are tax free at death unless the combined total exceeds a cap (used to be $600,000 - but it is more now). After reaching the cap the donor (not the recipient) must pay gift/estate tax.

[ohtransplant]

89. "Income is income from any source derived." ...

unless specifically excluded under the IRC. (full definition)

I'm not sure it's income... It's more likely made up of gifts...which aren't taxable to the recipient. In fact, if any donor gave more than $11,000, THEY may need to fill out a gift tax return.

When in doubt, a revenue ruling could be requested from the IRS (for a fee of course).

edit:sp

[Maat]

65. Well, at the very least there is the good ol' Totten trust ..

an informal arrangement at a bank. But that would not do us much good. I think that we are talking about some kind of verification up front.

When I was a social worker, they had Children's Fund. We could go there to request a refrigerator for a family or whatever.

The problem, in my opinion, was speed. They would tell me they needed a copy of the petition, the court report and the service plan (getting into 'none of your business' territory to me). And they would take forever to 'evaluate the request in committee.' I thought, 'There has to be a better way.'

[theboss]

67. But that's in the public sector

Privately, would be different.

[Maat]

72. Hmmm.

Has to be a simple way .

[theboss]

74. Ask your estates and trust prof

Mine is 300 miles away and views me as a grave disappointment. So I avoid him.

[Maat]

76. Now you are making me laugh.

I'm out of school now (awaiting bar results) ... but, as a matter-of-fact, there is someone I could ask ... as soon as I stop laughing.

I'm afraid also that it was not my best subject.

[ultraist]

78. Moving large amounts of money around is never simple

There is no way to avoid taxes, as a recipient, on gifts/donations over 11k, unless you set up a non profit which has certain requirements, paperwork, etc. I'm not familiar with non profits but it seems this may be this best route for fundraising. Most private orgs that fundraise are non profits. (Barring political orgs that must adhere to campaign financing laws).

This is not to say, there are not a lot of loopholes for people who have large amounts of money they move around, but this is what we pay our estate attorneys and CPAs to figure out for us!

[Maat]

80. Oh, man, we just incorporated as a not-for-profit ..

our local Democracy for America - as a 501-c-4.

A lawyer in the club helped.

I did a little research - to be able to talk to the lawyer - it was a pain in the bleep.

But I did become familiar with what a 501(c)(3) is, a 501(c)(4), and a '527.'

Boy, that stuff sure was good material to read before bed - if you had insomnia.

[Pachamama]

101. The Patriot Act actually put into effect certain requirements re. funds &

also monies placed into trusts. This was done to help prevent money laundering and funneling of money to terrorist groups...Lawyers and firms who set up trusts are now required to have holds on funds they previously didn't have to do...

Why Andy and his supporters didn't set up a trust is bewildering to me personally....It's quick and easy (any lawyer can do it for you in a day and many will waive any fees other than their admins time of an hour) and it makes the depositing and dispensing of funds clean and auditable. The way this "collection" was conducted was an IRS red flag and I wouldn't be surprised if a year from now causes big headaches for Andy when the IRS comes knocking. Andy seemed to have had time to research that JH was the "best" place to get the surgery, but he couldn't call an estate planning attorney or CPA to set up a surgery trust? :shrug:

I know Andy has done good work for voting fraud issues in this election and I have admired and appreciated that dedication and work, but I for one did not feel comfortable with the manner in which "the collection hat" was being conducted on the DU in the GD forum. I also am from the Seattle area previously and Virginia Mason Hospital is top notch and I found it not very sympathetic of a situation that he turned down surgery there that would have cost less and qualified for coverage thru WA state medicaid payments in order to instead go to JH.

[progressivebydesign]

73. I agree with not painting Hopkins as the bad guy...

.. I think everyone got so worked thinking that poor Andy had only days to live, and didn't realize the exact situation we had. We do have enormously renowned hospitals here in the Seattle area, had Andy needed the surgery within days. The choice was apparently made to go to Hopkins, even though Seattle's cancer centers do that procedure too, because someone felt that they would do a better job. So.. I understand Hopkins policy to serve their own indigents and uninsured first. Just as I'm sure it's the same for the hospitals here in SEattle.

[EFerrari]

114. We had a sponsor at JH, none in Seattle. These days apparently

you need one, even if you're going to walk in with cash money ;(

[jayctravis]

82. Doesn't it suck that a website has to become a

defacto healthcare system?

[EFerrari]

100. Are you insured? Keep us updated. n/t

[spooky3]

83. Thank you for sharing your expertise and excellent advice.

[Eloriel]

84. Just a small correction --

$50,000 wasn't handed to someone.

A lot of $5 and $10 and $50 and $100 etc. donations were handed to Andy. (Do you really think it's PayPal's business to determine if Andy should've gotten the money sent to him? If not PayPal, then who -- DU? I don't think so.) It was all his money. The few contributors who had second thoughts got their money back, or could have while someone with a questionable agenda has further endangered Andy's life (and everyone's money, I might add) because of his interference.

I'm still a little stunned that Johns Hopkins would behave like extortionists.

Oh, please. AFAIC the whole damn medical establishment is little better than organized extortionists.

[theboss]

87. I'm not accusing anyone of anything

I've just never seen a "fundraiser" organized quite like this before and I would not recommend doing it the same way in the future. I'm not questioning the validity of Andy's claim. But I don't know him. I don't really know the people who vouched for him. And I imagine most of the donors did not. I just think there has to be a much much better way to handle this in the future to avoid the sort of problems that occured.

And - as I said - I do this for a living. And I think there is more to the story than was told - not about his condition or his need for money. My experience tells me that there had to be more options than one hopsital demanding a year's salary in advance. Hospitals sometimes behave badly but this is worse behavior than I've seen in six years in the business.

[Name removed]

93. Deleted message

Message removed by moderator. Click here to review the message board rules.

[anarchy1999]

99. Oh please!

n/t

If you don't have a star well then what you have to say means nothing. Come on! We went two years without a star!

[fleabert]

95. I think the best bet is to not give if you don't want to...

I didn't have any problem giving, no matter what. I only gave what I could live without. I trusted the sources, that was enough for me.

I would rather be conned and have given, than not give and have it be true. I certainly don't ask what the money is for when I give a homeless person a dollar, it's not my money anymore, none of my business.

[fleabert]

96. and also...time to donate to DU!

unlock your profile too, please. I might like to send you a pm sometime, or put you on my buddy list.

[EFerrari]

97. I so completely agree with all of the above

My challenge was that after scoping out the venues that had higher survival rates, we only had a sponsor at Johns Hopkins.

And I learned that we needed the deposit immediately as they have no "track" for uninsured people. They tried to turn me away -- let's say I heard the cock crow three times. I got a reprieve on a Thursday, until Monday.

When I called back on Monday, my contact was out of the office. And she continued to be out of the office for a solid week. So, the next weekend rolled around, and I was shuffled from the doctor to the hospital. And, they very kindly informed me we had to give them everything up front.

Now: I've never done fund raising on this scale before, and believe most of these troubles are my fault. I could have taken the initiative and gotten a statement from the Finance people in Admitting in the first place. And, had I to start over, I would. I just didn't have the imagination to foresee this.

And, because Andy had no insurance, there was no "track" for him. We were disrespected mightily before the Finance people found their own check in their mail room. (Or, before a DUer found it for them.)

After all the fund raising, I spent another 24 hours begging the hospital admins to look for that check.

* * *

There is a potential for abuse here. And we need to mind it,

It just sort of kills me to see this amazing thing that DU did be trashed. Because for me, that was at least half the joy.

fwiw,
Beth

/typin'

[expatriate]

103. sfexpat2000, I just wanted to say

that you did a terrific job fundraising, given the circumstances. I spent some years working in medical and hospital administration, and the snafus and obstacles you describe are absolutely par for the course (contact out of the office for a week, checks being held up, rudeness and disrespect). Sadly, many people who have not had this experience don't know that hospital administration is an incredible bureaucratic tangle, particularly when it is confronted with a situation that is not in its usual experience, ie an uninsured patient from out of state, etc.

You took the information you and Andy had at the time and you ran with it - and that's what anyone in this situation would have done. What seems to cause a lot of the confusion and doubt in this situation is that in any medical situation, but particularly in a situation where cancer is involved, diagnoses can change and prognoses can change, depending on the amount of testing done, who reads x-rays, CT scans and other variables. This and the fact that many people have never run into the typical hospital administration boondoggles leads to the kind of doubt, backbiting and insinuation we've seen here of late.

There was no way you could have second guessed what would happen. You went with what you knew. Personally, I believe that everyone has been honest and very open about this entire thing, and I think that they will all be vindicated in the end.

I hope all of DU can take this as a learning experience - and yes, a good thing has come out of it. I think there are many here who donated who feel the sense of joy you described, and who are not doubting. They're waiting, and hoping and those who are inclined to are praying that Andy just gets the help he needs and gets well. And I do hope that there is a protocol set up for future events such as this - and there probably will be, because of the sorry state of health care and health insurance in America.

You worked like a fiend for something you knew was the right thing to do. You spent so much time on this, and you never gave up. Even if, in hindsight, you see ways that might have made the process easier or more efficient, you did a great thing. So did the other people who fundraised - and so did those who donated and will continue to donate.

I want to thank you, so very much. Thank you, Beth.

[EFerrari]

110. Do I have your permission to print that out and put it under my

pillow? :hi:

[question everything]

112. I second this

sfexpat2000 reacted with her heart - which is what most of us wish more would do. She heard that someone needed help and she jumped to do what she could. And later merh established the Amazon link. And flyarm cheered and encouraged everyone. And I think many of us - with cable modem - stayed on these thread to bask in the wonderful atmosphere of love and cooperation that is so missing from daily political life.

Of course, hindsight is always 20/20 and I am grateful for the person who started this thread and to Will Pitt for raising these valid questions.

As I mentioned above - I do not regret sending money, but I can see the sense of apprehension for those of us who used the information from here to approach others who are not DUers.

All that aside, sfexpat2000, flyarm, merh, hiley and many others are our heroes for bringing out the best that DU can do.

And yes, please open your wallets one more time for DU.

[theboss]

105. In no way am I criticizing you

You apparently did the best you could under the circumstances.

All I am doing is trying to figure out how this could be done better in the future to avoid all the madness that ensued here. My training is to look for worst case scenariois. And I had a feeling that the way the money was raised would eventually lead to a lot of questions in the future, which it has. But I didn't feel it was my place to offer advice at the time - particularly since it seemed like life and death decisions needed to be made immediately.

[EFerrari]

109. Sure. And, of course, I've been turning it over and over as well.

The only thing I've been able to come up with, is I could have gotten some sort of statement from the Finance person in Admitting before posting my thread. On the other hand, there is a contingent here that do not want verification but to stir up trouble, so nothing I'd have provided would have been a deterrant to them. I'm not talking about DUers, but disrupters.

We don't know the medical consequences of this delay, do we? I hope there will be no significant ones.

We really need to nail this down because health care is going to get worse before it gets better.

[anarchy1999]

98. Thank you , well said and Peace. We really needed an attorney's

perspective. Thank you again. I suggest you contact Skinner in a PM.

[nedbal]

102. My experience with Hosp. demanding prepayment

First let me sincerely thank theboss for his expertise and sharing it with us

prior to 7 years ago if one needed a kidney transplant and went for a pancreas transplant at the same surgery hospitals would want 25k upfront for the pancreas portion, the kidney and most of the cost of the simultaneous procedure was covered by Medicare/insurance. Then Medicare changed and they covered both, so all private insurance followed the pattern set by Medicare.


I've been billed 2mil in the last decade, thankfully I have ok-good insurance and follow the rules

there are organizations that take donations for causes such as Andy's and act something like a escrow medical account. they have web sites and can be found , I'll let another do the research on this aspect.

I try to follow international health care, the Australians seem to have the best system, NHS in the UK has gone down from where it should be, Canada is tolerable, here in the US is panic and unbearable paperwork even with good private insurance

[Sgent]

108. Find a non-profit

Surely there is a non-profit already established who could serve as the clearing-house for the donations. This may be the easiest route to take, as there are significant expenses involved in setting up a trust or 501(c)3, and filing annual returns, etc.

Quite likely, John's Hopkins themselves would have agreed to do it in this case. This would have the added benefit (I believe) of providing tax free donations.

[EFerrari]

113. JH refused to process donations. Heck, even with

a very influential sponsor, the doc's office really tried to get rid of me altogether.

And while I did some research on grants, I never did find anyone who advertised that they'd open an escrow. And when the heat was on, I couldn't look any more :(

But, it certainly would have been my preference that the donations be deposited in a trust or into an escrow account.

[Moderator]

115. Locking

See Skinner's pinned thread at the top of the forum