Two livers, two healthcare systems

I have a career in computer technology and so came to the internet earlier than most. As a result I have a group of friends/colleagues across the globe with whom I speak regularly albeit online. The nature of online forums mean that people who have a shared interest in one area (in this case computer technology) may well have diametrically opposed opinions in other areas. For many years I have conducted some vociferous arguments with Americans who regard the NHS as communist and hence all that is evil. The years of such discussions has enabled me to build up arguments in favour of the NHS, which, in my wildest nightmares, I never thought I would have to use with my own countrymen. How times change.

One such person is Len (I've changed his name). Many times over the 15 years I have known him I have had to put him in my Bozo Bin (block responses from him) because of his extreme right-wing views on healthcare and his attitude that if you simply do not have the money then you do not deserve the treatment. Here, is a forum post from a year ago when he told the group about the condition he was suffering (I have edited it slightly to put the facts in context).

Len has liver failure, which he blames on anti-depressants he was described when his wife died:

Most of you know I lost my wife to Atherosclerosis. That was a bit over 3 1/2 years now. In the first 6-8 weeks after she passed, I lost over 50 pounds because I  simply gave up trying to survive. Then I let my "less than perfect" (saying it nicely) doctor talk me into taking several anti-depressants. The worst of the bunch was called Cymbalta and that's what I blame for my liver problems. The list of side-effects is almost ridiculous. One side effect says "in rare cases, may cause liver failure and possibly death"... well, it didn't kill me outright, but tried very hard.

So a year ago I developed the symptoms of liver failure and I get tired easily due to poor liver functions and get a lot of fluid buildup. Last summer, I spent 5 days in the hospital because this fluid became infected. Over that 5 day period, they drained 20 liters of fluid from my body. That's 10-2 liter bottles of Pepsi! Right now, I have /some/ fluid... not much. I eat a handful  of water pills every day and watch my salt intake, so that, pretty much,  takes care of the fluid problem.

The first day in the hospital was the worst. Since it was the first time I'd ever been in the hospital, for any reason, I was extremely nervous and hated every minute. Days 2-5 weren't so bad because I had a great team of nurses. My morning nurse brought me coffee from Starbucks every morning! Can't beat  that! I was in USC hospital and... no matter what anyone says.... their hospital food was *great*.

When I had all of that fluid in my abdomen and legs/feet, I literally looked pregnant (the extreme pressure caused my 'belly button' to rip and protrude -  very painful) and my legs/feet looked like something a cartoonist would draw  - felt like they were going to "pop" any minute.... I always said I  had "Fred  Flintstone Feet" because they were so puffy I couldn't even bend  my toes. Needless to say, I couldn't wear shoes. Even "diabetic shoes" were too tight.  I /did/ have one pair of shoes that "fit".... Nike Air's with super long  laces that would expand far enough to let me put my feet in them.

I suffered through well over a dozen tests to see if I would be healthy enough to survive a liver transplant. I passed all tests with "flying colors". My heart, lungs, circulatory system, intestinal tract, etc, etc, etc, passed without any problems at all. I had several EKG's, an Echo Cardiogram and Pulmonary Function Test (breathing) and the doctors were almost amazed at how healthy my heart and lungs are, considering I've been a smoker for years and have had such a devastating decade. My heart is "as healthy as a horse", so they say and my lungs work better than quite a few people much younger, who've never smoked a day in their lives.

I had to quit smoking, though. Insurance wouldn't pay for the transplant if I were still a smoker.

I have AB+ blood (a bit on the rare side) and my step son, who has O+ blood (universal donor), volunteered to be a living donor for me and let me have 1/2 of his liver. He went through several tests and we were ready to make a decision to wait for an entire liver or go with the living donor program...

This is all very concerning and I recognise the symptoms since my wife's stepfather - an alcoholic - developed the same symptoms over a decade ago. He is a small wirey man who, over a period of a couple of months, ballooned through the fluid build up. The toxins that build up in the blood also have an effect on your mental processes and my wife's stepfather's thought processes slowed down and at times he hallucinated. Liver failure is not pleasant.

As Len describes, patients with liver failure go through a whole series of tests to see if they are suitable for a transplant. My wife's stepfather went through these too and was found to be suitable. Decades of liquid lunches had luckily not affected the rest of his body and unlike Len, he had given up smoking in the 70s so his heart and lungs were in a great condition for a man in his 60s. In addition to the medical tests, transplant candidates have to go through psychological tests, particularly if they are alcoholic. My wife's stepfather passed these tests, assured the hospital that he would not drink again, and was put on the waiting list.

Then the door developed a squeak. They found 3 tumors in my liver and assumed  they were liver cancer. To the transplant staff, that was almost "good news",  since it placed me much higher on the list, as far as transplant priority  goes.

This too, I recognise. My wife's stepfather was told that the operation is complicated and lengthy and the aftercare is far from straightforward (as we have found out since). He was told that to get the transplant he had to be ill enough to need it, but strong enough to withstand the operation. He was certainly strong enough to survive the operation (liver failure was his only medical condition). When it was discovered that he had liver cancer it meant that he was prioritised to have the transplant.

So now there was another complication, along with liver failure he had cancer and the possibility of it spreading. Notwithstanding the effects of his liver failure, my mother-in-law could cope with his care, but with the diagnosis of cancer she enquired about additional help at home and through her GP she was put in touch with MacMillans. They never did need the help of MacMillans, but it was reassuring that the help was available.

They were just going to keep the tumors from spreading by using a drug that doesn't try and kill or shrink them... just stop new ones from developing... well... one final MRI shows a 4th tumor. Now they had to do a biopsy (not a fun thing, take my word for it)...

They found this newly discovered tumor was in my bile duct, right outside of my liver... the particular type of cancer is called cholangiocarcinoma... a rare type of cancer, of course... just my luck. Now, everything has changed. I can no longer get a transplant... most likely never, ever... and they said that, in most cases, people with this type of cancer survive from 4-36 months, depending on how they respond to treatment.

They can't use surgery or strong chemo-therapy/radiation because of my existing liver damage. That means they can only use "low dose" chemo (for now) and try to slow down the process (which is where the 36 months comes in)

The good news (if there is any) is that I don't feel "bad" at this point.

This is devastating news. The final hope for Len had gone, there was no chance of a transplant, and no chance of attempting to treat the cancer through surgery, chemotherapy or radiation. It was just a matter of how long he could be kept alive.

In the case of my wife's stepfather, his liver cancer had not spread by the time he had his liver transplant. That was a decade ago. It was successful, and now he has a fully functioning liver, but the treatment does not stop there. The anti-rejection drugs have significant other effects and he has had a decade of low white blood counts, which means that any infection affects him badly. He has regular consultant appointments - travelling 50 miles each way to one of the brand new super-hospitals that were built in the last decade. He has regular appointments with his GP, who monitors his general health. The last few years there have been several scares and several interventions: he has had many blood transfusions.

As you can imagine he takes a bucket-load of pills every day, and he has regular blood tests to ensure that the combination is correct. Last year it was clear that the drug combination was not effective and his consultant was concerned since he had tried all the available alternatives. There was one drug, but this was not on the NICE approved list. Note that this is not a cancer drug so Cameron's ludicrous cancer drug fund would not help him. So he had to go through the process of persuading his local PCT to fund an expensive drug. They agreed. Whether the new GP consortia will pay for that drug (or more to the point, will pay for it for a new patient who needs that drug) is another question.

Before his liver troubles my wife's stepfather would always complain about how much tax he paid, and often complain about the NHS, it took one sixth of all taxes and since he had never used it he felt it was a waste of his taxes. After his liver problems he realised the benefit of a social insurance system that gave people the treatment they needed (even extremely expensive treatment) regardless of their personal wealth. He has easily had more treatment than he has ever paid in taxes.

So back to Len:

Most of you also know I was laid off in November of 2005. I had an excellent chance of getting a job that was easy but without any loss in pay and much, much closer to my house...  then I got sick and that fell apart. Since then, I've had several job opportunities that fell apart due to my health (1-5 doctor visits per week)

What many people in the UK do not realise, is how significant medical insurance is in the US. Many employers provide health insurance as a benefit, and, particularly for people with families, this kills job mobility. If your employer provides a good insurance plan then you are willing to put up with a less than perfect job rather than move to a better job with the risk that the insurance plan will not be as good. Young people are more mobile because they do not think they will ever have to use healthcare ("indestructibles") but I've seen marked shifts in the attitudes of US friends at the point of the birth of their first child. The huge cost of childbirth jolts them into understanding how important their insurance premiums are. As for people with chronic conditions, well, their condition defines their life, it becomes their life. They work to pay for their treatment, rather than to be a productive and contributing member of society.

The problem with health insurance is that it shifts much of the decision making from clinicians to bureaucrats. One friend's husband had an accident at work and needed an operation on his leg, but the wrangling between the various insurance companies delayed the operation which complicated the condition. Months later, when he finally had the operation, the condition had worsened and the operation was more complicated and more expensive. I hear terrible stories about patient choice: to keep costs low insurance companies restrict where you can have treatment. Another friend has to travel to another city 20 miles away because their insurance will not pay for any of the primary care practitioners (GPs) in her town. This affects not just her and her husband, but her children too. Imagine having to take your sick child 20 miles to see a GP. Similarly with hospitals. Sure, if you can slap a pile of dollar bills on the desk you can get treated anywhere, but most people, even middle class people, do not have an available wad of dollar bills.

When you talk to Americans what you learn is that it is not healthcare that is the problem, but insurance and Obama's reforms were actually more about reforming insurance than healthcare. Bizarre as it may sound, when I have travelled to the US on business (which I used to do 5 times a year) I had better coverage than many of the people I worked with, particularly if I was attending a conference and there were many people out of state, since their insurance would not cover them for out-of-state treatment and my travel insurance would covere me wherever I was in the US.

Len was middle class. He was a software engineer and had quite a comfortable life in Southern California. But as the quote above shows, when his health problems started he could not get a job. No insurance company would want to take on the responsibility. Neither personal, nor through an employer. And no employer would take on the liability of an uninsured employee. Even though Len was good at his job and very employable when he was well, after he developed medical issues he became unemployable.

I've been on State Disability since that time and not doing too terribly bad, financially. SDI pays nearly as much as my former employer because my final quarter included my severance/vacation and sick pay... which brought the total up quite a bit for that quarter. I know SDI won't pay forever and I've gone through the steps required to get Social Security based disability... problem with that is, it's only about 1/2 of the amount I get from SDI, which means I'll probably lose just about everything I own.

I'm pretty sure I have a place to go... so I won't be homeless, or anything like that (whew)... these days, it almost seems like California would rather let someone go homeless than have to pay them "for nothing" or deal with the paperwork. The people who work at the government offices are a bunch of a-holes, if you ask me. They're "full of cheer" when they apply for the job and quickly turn into heartless robots after a few weeks. Same goes for medical staff.

Essentially, the state welfare benefits were initially good, but time limited. He's applied for other benefits, but when you consider what he has to pay for his treatment (remember, he is not employed, and does not have medical insurance) the last few months of his life are a financial nightmare. He will lose his home to pay for his treatment, but friends have offered to give him a place to live.

My wife's stepfather was close to retirement when his liver troubles started. He was self employed, so the time off work did have financial implications, but the money he had to find was for the normal costs of living. He did not have to pay for the medical treatment. He had paid off his mortgage and had some savings. If he had not got this financial buffer the welfare state would have stepped in. Benefits are not generous (and they are being cut by this government) but no one has to sell their home to pay for medical treatment. Consequently, his primary concern was his medical condition.

Coincidentally, at 50 my father was seriously ill, he neither smoked nor drunk and was generally quite fit, his problem was that his genes were against him. He was ill for several months and I remember when he moved to sickness benefit (if I recall correctly, about half his salary) it had quite an effect on the family finances. Dad recovered from that illness and went back to work. Unlike Len, his ill health did not affect his employability because the costs of his ill health would not affect his employer (and to be fair, he was very much valued by his employer, who would have found it difficult to replace him). Len was a financial liability on any employer, my Dad was not because the NHS (and the welfare state) would absorb that cost.

(As I said, my Dad's genes were against him: he died at 68. My wife's stepfather's genes are very much in his favour, he is in his mid-70s still alive with someone else's liver.)

Len finishes his missive with a caution, but as far as I know, still clinging onto his belief that commercialised healthcare is the right solution, regardless of his experiences.

Well... that's my story.

No matter what... NEVER take your health for granted. People are *far* more fragile than most would assume. No matter how young or old, tomorrow is promised to no man. Heck... Even the "super healthy" can get slammed in a car  accident... Just be careful, watch the side effects of any meds you're taking  and try your very best to make each day count.

I have just learned that Len has died.

I had some very heated arguments with Len and we hurled great abuse at each other (and in every argument I was right, naturally). But the end of his life was quite sad, and just at the time that he was at his very worst, the system rejected him. No insurance, no chance of a job and a bureaucratic welfare system to which he had to go cap-in-hand to get the care he needed. He had to sell his home and rely on the charity of his friends and family for the last few months of his life.

Insurance is not wrong: the NHS is essentially funded by an insurance system where we all have to pay. The problem comes from insurance run as a business and hence, as any business, when it rejects custom from those from whom it cannot make a profit. In the case of health insurance, this means that sick, vulnerable people are rejected just at the time when they need it most.

Healthcare should never be about profits. Len would never accept the NHS as a legitimate system, but when you compare his story with that of my wife's stepfather, you will see exactly why we need the NHS and why we need to ensure that it is never comercialised.