How to reduce your Medicare Part D costs

SEE CORRECTION AT END

If you have Medicare Part D, you know about the “doughnut hole” in the coverage. On my plan, through Humana, I pay 100% for prescriptions after total costs reach $2880 within a calendar year. If and when the total reaches $4550, then the plan kicks in again. Reaching the doughnut hole means you’ve either had a single very expensive episode, or you’re on high-priced monthly medications. I had thought I was doing okay.

Then last November the pharmacy told me that one of my regular drugs was in short supply nationwide and they had to substitute another similar drug. My doctor approved it. I didn’t think it worked quite as well, but there seemed to be no choice. My co-pay had been less than a dollar, and went up to $7, but I didn’t really think about that. I talked to the pharmacist twice, over the months, about switching back but each time the supply of the former drug was not yet stable.

Imagine my surprise when I looked over the detailed claims records just now, and found that it was costing $165 per month in November and now in July it’s $183. Six months of this substitute drug during 2010 has added over $900 to my total, nearly doubling it, and pushed me alarmingly close to the no-coverage point of $2830. I would have been at about $1000 total cost for this calendar year, with $1800 to go before coverage ended; now I’m at $1927.

This is a good reason to keep a close eye on your monthly statements and catch this sort of thing as early as possible. Your out-of-pocket costs may not be a good indicator of the total cost, which determines when you reach the “doughnut hole”. Although I had asked my pharmacist twice this year about going back to the original medication, I didn’t push it as hard as I would have if I had realized how much the substitute was costing.

I wish I had a week to put into researching pharmaceutical companies: what drugs are made where, results of FDA inspections, promotion of drugs for unproven uses, suppression of negative trials, why certain drugs suddenly are in short supply (collusion?), how pharmaceutical companies maximize their profits by manipulating patent law, and so on.

Here is just one of the many stories to be found, one that the House just took action on. Companies that own patented drugs sometimes reach “licensing” agreements with small companies that have developed generics, and by such agreements they prevent the generics [see ‘Pay-for-Delay’ Deals Cost Consumers $3.5 Billion a Year which summarizes a long FTC report of the same title available here, and If Pay-for-Delay Deals Are Good for Consumers, Why Do Companies Sign Them?] from being marketed even after the patent has expired. A chart in the FTC report shows the number of these agreements increasing from 0 in 2004 to 19 in 2009.

On July 2, Bloomberg News reported:

The U.S. House approved a measure restricting the ability of drugmakers to enter agreements that the Federal Trade Commission has said keep generic medicines off the market. … The restriction was included in an amendment to the war- funding bill, approved on a 239-182 vote.

Something we all might want to write our Senators about, to urge them to follow suit. The more generics are available in this country, the lower our costs will be as individuals, and the less our country will spend on health care. Let’s not worry too much about the profits of Big Pharma:

PharmaProfits.jpg

Chart from an AFL/CIO publication.

CORRECTION
Not all of my unexpected total prescription cost was caused by the substitute drug (costing almost 20 times the original that was “in short supply” nationwide). There was a sudden jump due to my choosing in June to get an expensive newly prescribed drug in a 3-month supply via Humana’s mail-order pharmacy delivery. That added over $600 to the total, and since it occurred in June I haven’t yet gotten the paper cost-summary from which I would have known this. I thought I’d save a bunch of money by going the mail-order route, but in reality the saving was very little.

Does fibromyalgia “get better” with age? (Alert: Whining ahead)

I’ve encountered this statement a few times since being diagnosed with fibromyalgia in 1992. Finally, at age 63, I think I’m qualified to offer an opinion upon it:

No, unlike a fine wine or a teething puppy, fibromyalgia does not get better with age.

It might seem that way, because some things that do change with age may lessen one’s concern about symptoms, or even ameliorate them.

As we grow older, we expect to have memory lapses, aches and pains, and reduced energy and strength. The person with fibromyalgia has a head start on all of these, believe me! But with advancing years, these symptoms seem a bit less unreasonable—or perhaps I should say unseasonable—even though I am still more tired, forgetful, etc., than an otherwise healthy person of my age ought to be.

Starting several years ago other people about my age began assuring me that my symptoms were “normal” for this stage of life, they had them too. Their intentions were benign, but I don’t like to hear this; not because I am clinging to the distinction of my disease, being “sick” but not “old”, but because I feel that the impairments of fm have been different. [It also echoes the remarks so familiar to people with fm or cfs or other chronic conditions, “Oh, you’re really tired/achy? Yes, I’ve had that too, just get some extra rest, you’ll feel better.”]

I was 35 when an injury caused the continuous pain and disturbed sleep that gradually turned into fibromyalgia by age 40 or so. During that time I went from having an unusually good memory, to the reverse. What did I do yesterday? Did I eat lunch today? What did I do this morning? Often I can’t answer such questions without some sort of reminder. Sometimes even with a reminder I have no recollection whatsoever of very recent events, and everything beyond a few days ago is gone or vague. Some days I grope for words—for a particular word, or to be able to put my thoughts into words at all. For a person who used to remember where on the page a certain passage of a book was to be found, or the details of bibliographic citations years after checking them, this sudden decline was, and remains, a severe assault upon my sense of who I am. And rightly or wrongly I think the daze that so frequently envelops me is not typical for a 63-year-old. Maybe at 85 I’ll feel it is age-appropriate. Until then, dammit, I’ll feel ticked off and robbed. Join the club, eh?

Still, inevitably over time one grows less sensitive to diminished abilities, and the limitations are less at odds with one’s lowered expectations.

As for symptoms seeming to decrease with age, I think this is a result of getting better at coping and self-pacing. I’ve learned to avoid things that aggravate the fm, such as late nights, loud or crowded places, being on my feet too long, and overexertion (whether it be in duration or in type of activity). I’m less of a perfectionist, I have a combination of medication and mental techniques to help me get to sleep most nights, and I feel okay about saying “I need to go lie down and rest for a while”. It’s following the naval maxim of “maintain a steady strain”.

The danger with all of this—lowered expectations, avoidance of stressors—is that it becomes a downward spiral. And age provides a reassuring excuse. Of course I’m doing less than I did last year, I’m getting older.

I keep pushing myself mentally, with challenging reading and dogged efforts to learn new things. Even though most of what I read today will be gone from my mind tomorrow, I tell myself that the effort may keep the neural connexions from deteriorating as we know they do with lack of use. Blogging has become a good motivator, encouraging me to do some writing, and follow research interests to produce and finish short pieces.

Physical exertion is harder because the pain and fatigue always increase, sometimes severely. When I was working a fairly physical job, I came up with this description for how I felt when I got up in the morning: “as if I’d been forced to run up a mountain, and then kicked and rolled all the way back down”. The chronic fatigue and pain in muscles and joints have been dialed back now that I’m not on my feet all day lifting, bending, carrying, etc., but they’re still there. I’m struggling to stay on a program of walking about 45 minutes every other day, motivated by a recent blood-test result that was in the pre-diabetic range. Some days I don’t want to expend a big part of the day’s energy for walking, or I feel worse than usual. There are no rewards of feeling noticeably better, but if I take the dog and my camera I will enjoy the walk itself.

Being off of methadone has made a big difference mentally and physically. It’s been two years last month, and I think I’m still improving. I couldn’t have walked for 45 minutes before that. Drugs that don’t help just weigh you down, and methadone does a lot more harm than most. (earlier post about getting off methadone)

So, in some ways I really am feeling better. But it’s not due to aging.

Thistles,GrazingAmong.jpg

Note for logophiliacs

After I put the word “whining” in the header, I encountered what would have been a good alternative if it weren’t quite so obscure. It has such appropriate associated meanings. I may whine and twine, but I’m trying not to dwine.

Twining
A minor lexicographical result of the devastating floods in Cumbria last week has been the appearance in at least two UK national newspapers of the dialect word twine, to complain or whine (“Cumbrians are a unique breed. They say what they see. They are hands-on people. They will twine and moan but then they will just get on with it.” — Metro, 23 November). It was at one time widely known throughout Scotland and the north of England. By way of another of its senses, to be fretful, ailing or sickly, it may be connected with dwine, another dialect word, to pine or waste away, which is from an ancient Scandinavian source. from Michael Quinion’s World Wide Words, # 667, 28 November 2009.

Photo by author.

Total knee replacement surgery, the second time around: learn from our experience

Nearly three years ago my husband had Total Knee Replacement (TKR) surgery. It’s drastic and major surgery, which people usually only choose when the pain from osteoarthritis becomes intolerable. And, it was not done properly so that last month it had to be re-done! Perhaps our experience can be useful to others.

Why do knees need to be replaced?

Generally because of pain and restricted motion caused by loss of cartilage (which cushions and separates the bony parts of a joint) and growth of bony “spurs”. This is labelled osteoarthritis. Other causes, like trauma, rheumatoid arthritis, and infection, account for a minority of the 300,000+ TKRs each year in the US.

As to what causes osteoarthritis, that is less understood than previously thought, when it was all blamed on “wear and tear”. The knee is the largest joint in the body, and bears the complete weight of the body at each step we take, so it is indeed subject to lots of “wear and tear”. Common-sense risk factors include types of high-stress activity in work or sports, injury, obesity, infection, stiffness from lack of activity, and age (since cartilage becomes more brittle with age). However, not all elderly people develop arthritis and some who do have no significant pain. This is why I said above that knees need to be replaced, not because of osteoarthritis, but because of pain and reduced range of motion.

The biologic factors leading to the deterioration of cartilage in osteoarthritis are not entirely understood. Many experts believe that osteoarthritis results from a genetic susceptibility that causes some biologic response to injuries to the joint, which in turn leads to progressive deterioration of cartilage. In addition, the ability to make repairs becomes progressively limited as cartilage cells age.

Although osteoarthritis generally accompanies aging, osteoarthritic cartilage is chemically different from normal aged cartilage. As chondrocytes (the cells that make up cartilage) age, they lose their ability to make repairs and produce more cartilage. This process may play an important role in the development and progression of osteoarthritis. [Emphasis mine. Source: www.healthcentral.com ]

What’s involved in Total Knee Replacement surgery?

The x-rays below, from the site of a prosthetics manufacturer,

kneeXraysB&F.jpg

show views of a knee before and after surgery. On the left, cartilage loss has caused bone-on-bone contact: very painful. Bone spurs or bits of broken bone floating around can also cause pain in the deteriorated joint. On the right, an artificial knee joint (prosthesis) is in place. (These are not x-rays of the same knee; in fact, looks to me like one’s a left leg and the other is a right leg.)

Here are some views of prostheses. To install them, the ends of the two long-bones of the leg, tibia and femur, are sawed off (removing “usually between 2 and 12 mm” according to one source) and the artificial joint is affixed with cement, screws, etc. The work involved in removing bone and attaching the prosthesis involves considerable force and power tools. Note that the knee-cap, as well as muscles and ligaments, must be carefully moved aside to install the prosthesis. [Picture sources: 1, 2, 3 ]

KneeProsthesis1.jpg

knee-bone&prosthesis.jpg

knee-implant1.jpg

There are many patented designs for artificial knee joints, and these illustrations are for general example only. Surgeons have their preferred models; many were developed by orthopedic surgeons, and those surgeons tend to prefer the ones they have an interest in. Choice of prosthesis isn’t something the patient can weigh in on, we don’t know enough, but you may want to find out if your surgeon has a financial interest in the one he is going to use; if so, perhaps a second opinion would be valuable on the pros and cons of various types as applied to your individual case. Most insurance will pay for a second opinion for major surgery.

Research continues for better, longer-lasting designs and breakthroughs are regularly announced with fanfare––but some don’t fulfill their original promise, as with teflon-lined joints which wore away much faster in practice than lab tests had predicted. You will have to rely on the experience of your surgeon.

You can see photos of the stages of knee surgery (not for the faint-hearted) here, on a prosthesis company ‘s site.

Our experience

Surgery #1, 2006

Now, back to my husband’s case. Dan had knee pain for years that ruled out unnecessary walking, as in hiking or walking for enjoyment, and interfered with sleep. There was bone on bone contact and perhaps bone spurs or growths from osteoarthritis. In August 2006 he underwent total knee replacement surgery by an established older orthopedist in our area. Afterwards, the surgeon came out to me in the waiting room and told me that the operation had taken half again as long as planned because they had “run into something unexpected”. Later, when we knew more, that remark would have much more significance to us. The “something unexpected” was apparently the result of a broken leg at age ten, that had caused greater reliance on the other leg (the one that received the TKR).

The surgery was brutal, with terrible bruising all over the leg, and post-op pain and swelling were severe. From the beginning, the prosthesis felt loose and insecure, sometimes the knee buckled, and after the post-surgical pain subsided, he was still in pain sufficient to make walking difficult. At each visit with the surgeon Dan raised these issues and was told to exercise more, and that it would get better with time. Two years on, that hadn’t happened, and the surgeon then agreed that the knee was a bit loose and offered to go back in and “put a shim in it”.

At some point after the 2006 operation, when it became apparent that it had been unsuccessful, I began to research the subject. Immediately I found that it’s common practice now to use Magnetic Resonance Imaging before TKR, rather than merely relying on x-rays. MRIs provide an exact and minutely detailed three-dimensional picture of the joint. The data can be used to make a 3-D visualization that can be rotated. This way the surgeon knows exactly what to expect; the prosthesis is customized, if necessary, beforehand; the surgery is generally shorter and the incision may even be smaller. (Other advances, such as computer-assisted orientation systems to guide the surgeon in positioning the prosthesis during surgery, may also be used.) Nothing like this was done in Dan’s case, and we didn’t know to ask about it. We know now that the original surgeon does have access to an MRI, in the hospital across the street from his office, and used it to look at Dan’s hip after the bad artificial knee began to cause a lot of pain in his hip, back, and other knee. But he didn’t use it for the knee needing replacement.

Surgery #2, 2009

Finally, after the remark about putting in a “shim”, we began to look for another surgeon. I searched online for someone who used MRIs and computerized techniques for joint replacement and who was experienced in what I learned is called “revision” (re-do) of TKRs. (Some surgeons, including the only other ones in our area, won’t touch someone else’s failures.) I found a surgeon who met these qualifications, about 4 hours drive from where we live, and we went to see him. The first thing he did was to get a full-leg digital x-ray, which surgeon #1 had never done. He showed us the x-ray, and used software to examine the precise alignment of the prosthesis. It was 7.5° out of alignment. In effect, his lower leg-bone had been detached and then put back on at a different angle from the upper leg. For over two years the first surgeon had taken no steps to examine the results of his surgery, other than feeling the knee.

We liked what we saw here, added to what we already knew about Surgeon #2’s experience, and proceeded with the preparations for a revision.

In late May Dan went through the revision surgery. Pry off the old, shave off a little more bone, affix the new.

When the surgeon met with me afterward in the waiting room, he had troubling things to report but they weren’t about what had just taken place. He told me that the prosthesis he had removed was badly installed. He actually used the word “sloppy”––and you know how rare it is for doctors to criticize one another’s work! The lower part was out of alignment both front-to-back and side-to-side; the upper part was supposed to be stabilized by the bone growing into it on all sides, but this had not taken place (he remarked that he did not use this model because sufficient bone regrowth often failed to occur). So this artificial joint had been loose and seriously mis-aligned, with every step stressing both parts of the prosthesis, the ends of the bones, the muscles/ligaments/tendons, and the other joints involved in walking (back, hip, other knee). It was clear, said the surgeon, that this had been causing Dan considerable pain, and he felt confident that the new prosthesis was going to be a great improvement.

Today is post-op day 19, and there is no comparison between the two post-op experiences. The day after the surgery they got Dan on his feet, and the first time he put his weight on the new knee he said that it felt more solid than the old one ever had. The next day he was walking the hall, slowly, and walking without hip pain for the first time in ten years. Bruising of the leg is minimal, the incision is shorter, and pain is less. The first time he was using fentanyl patches, very heavy opioid painkiller, and was still in too much pain. This time it is Tylenol-3 every 4 hours, and ultram (tramodol) occasionally when needed.

The incision is closed with superglue, covered with crossways lengths of what looks like strapping tape: no staples to distort the skin and then have to be removed. He was able to take a short shower on post-op day 5. Last time the first shower was not permitted nearly so soon and he was in so much pain he had to sit down on a plastic bench in the shower. This time, he was easily able to stand and feel secure. He’s in pain, but not nearly as much as last time, and the solidity of the knee makes it possible for him to get around the house carefully but confidently, only occasionally using his walking stick for stability (and to keep the dogs from bumping him).

Like the first time, the anesthesia was a spinal block (not general anesthesia) but the new surgeon added a femoral nerve block. As I understand it, the spinal keeps pain messages from reaching the brain during surgery; the femoral block keeps the nerves immediately affected by the surgery from registering pain which gets the nerves excited even though the brain doesn’t hear about it. It’s supposed to lessen post-op pain and it certainly seems to do that, especially for the first 24-36 hours.

There is swelling, but it’s not bad unless he keeps his leg bent too long while sitting; last time he was still mostly in bed for at least 2 weeks, and the swelling was severe from above the knee to the foot. Perhaps this is related to another difference in surgical procedure: this time a drain was placed near the incision with a receptacle attached which had to be periodically emptied of fluid, partly blood. Before the drain was removed, 1200 cc of fluid had been collected. The first surgeon did not place such a drain, the leg continued very swollen, and at the two-week check-up the surgeon had to use a syringe to remove at least 200 cc from the still very swollen knee. Doing this is risky because in raises the risk of infection, which would be a dire complication.

At this point the future looks very good for this new knee, and we are talking about being able to get out and hike with our dogs again. I still have limited energy (fibromyalgia) but more than I used to, since getting off of methadone which I took for pain.

Lessons learned

The parts of our experience that I think may be useful to everybody facing joint replacement surgery are these:

Research and ask questions. Get a second opinion.
This is major surgery which will shape your everyday life for the next decade or more. Revisions are to be avoided: not only because of pain and expense, but each surgery removes a little more bone. Don’t be afraid of getting a second opinion, even if your orthopedic surgeon seems great. Believe me, if your orthopedist were going in for brain or heart surgery, he or she would ask around, not just take the first name in the phone book! Insurance generally covers second opinions for major surgery.

Educate yourself about the surgery in general: what can go wrong, and why? what are the different methods?

In choosing a surgeon, standard advice is to find someone who has done this particular surgery a lot and does it regularly. That’s good advice, but incomplete. Our first surgeon had lots of experience and he performs knee replacements regularly. But based on results and what we’ve learned since, this fellow has not kept up with new methods: MRI’s, femoral nerve blocks, post-surgical drains, etc.

Of course nothing is better just because it is new. Some things provide an advantage even the layperson can evaluate, such as the use of MRI’s to see exactly what the joint and surrounding bone look like, so that the operation can be planned using that information. There’s no real downside for the patient in providing better information to the person doing the cutting and sawing. As for the high-tech implantable prostheses used in TKR, there’s always something new coming out, which may or may not be better. You can at least ask a surgeon how long he has been using the device he intends to implant into your body, what the failure rate is, and when and why it fails. Does it fail to be stabilized by bone growth, or do components or surfaces wear out? Does it loosen in 2 – 5 years, for whatever reason? Do particles get ground off and act like grit in a bearing?

Read up on the subject and you’ll get an idea of what to ask. Take notes on your reading and your concerns, and bring them with you; then take notes on what the doctor says. Have someone else come along to help by writing things down, reminding you of questions, and in general giving you moral support. The doctor is the expert, but your body is what’s at risk; don’t be timid about asking. In my mind, a doctor who won’t answer my questions fully, as fully as I want, doesn’t get my business.

Also ask what to expect after the surgery. Surgeon #1 kept stringing us along, telling us that things would get much better. Now we hear from others that isn’t really true, that you “know” right away. And indeed the bad job felt loose from Day 1 and never changed; the recent revision felt solid from Day 1. Certainly, telling us for 2 years that there would still be improvement, was unrealistic (charitable interpretation) and dishonest (blunt interpretation).

More information on Total Knee Replacement

There’s an encyclopedia-style summary of the procedure, risks, failures, etc. here that looked good to me, and another page on this site deals with TKR revisions (re-doing the TKR).
Wikipedia also has good information.

How to reduce the chances that you’ll need knee replacement surgery

It’s no fun, really. And you’ll get stopped by airport security for a special check, every time.

Knee_Replacement2.jpg

Photo from Wikimedia Commons.

Here’s the advice from the National Institutes of Health––

How Can People Prevent Knee Problems?

Some knee problems, such as those resulting from an accident, cannot be foreseen or prevented. However, people can prevent many knee problems by following these suggestions:

Before exercising or participating in sports, warm up by walking or riding a stationary bicycle, then do stretches. Stretching the muscles in the front of the thigh (quadriceps) and back of the thigh (hamstrings) reduces tension on the tendons and relieves pressure on the knee during activity.

Strengthen the leg muscles by doing specific exercises (for example, by walking up stairs or hills or by riding a stationary bicycle). A supervised workout with weights is another way to strengthen the leg muscles that support the knee.

Avoid sudden changes in the intensity of exercise. Increase the force or duration of activity gradually.

Wear shoes that fit properly and are in good condition. This will help maintain balance and leg alignment when walking or running. Flat feet or overpronated feet (feet that roll inward) can cause knee problems. People can often reduce some of these problems by wearing special shoe inserts (orthotics).

Maintain a healthy weight to reduce stress on the knee. Obesity increases the risk of osteoarthritis of the knee.

What Types of Exercise Are Best for People With Knee Problems?

Ideally, everyone should get three types of exercise regularly:

Range-of-motion exercises to help maintain normal joint movement and relieve stiffness.

Strengthening exercises to help keep or increase muscle strength. Keeping muscles strong with exercises – such as walking up stairs, doing leg lifts or dips, or riding a stationary bicycle – helps support and protect the knee.

Aerobic or endurance exercises to improve function of the heart and circulation and to help control weight. Weight control can be important to people who have arthritis because extra weight puts pressure on many joints. Some studies show that aerobic exercise can reduce inflammation in some joints.

If you already have knee problems, your doctor or physical therapist can help with a plan of exercise that will help the knee(s) without increasing the risk of injury or further damage. As a general rule, you should choose gentle exercises such as swimming, aquatic exercise, or walking rather than jarring exercises such as jogging or high-impact aerobics.

So there it is, same old thing: exercise and lose weight. If you really really do not want a titanium and plastic knee, losing weight is probably the best thing you can do. “Data from the first National Health and Nutrition Examination Survey (HANES I) indicated that obese women had nearly 4 times the risk of knee osteoarthritis as compared with non-obese women; for obese men, the risk was nearly 5 times greater.” Moreover, if you already have knee pain, losing even ten pounds can significantly reduce both pain and the ongoing deterioration of the knee. Being only 10 pounds overweight increases the force on the knee by 30-60 pounds with each step. You don’t need to reach your ideal weight; any reduction will help. And maybe that will be encouragement enough to keep going, slowly, losing weight and feeling better. (Thorough discussion of weight loss and osteoarthritis, here.)

Changing the American Health Care system

I responded to an email from moveon.org today, which wanted me to sign a petition to my Senators and Representative stating:

Full petition text:
“I strongly believe that Americans should have the choice of a public health insurance option operating alongside private plans. This will give them a better range of choices, make the health care market more competitive, and keep insurance companies honest.”

My convictions on this matter are different from moveon.org’s and from the position that Congressional Democrats like Baucus are putting forth, and so in the area for appending comments to be sent, I said:

Actually, this petition misrepresents my beliefs on this issue, based on 63 years of observation.

The single payer option is what we must adopt. A separate “public health insurance option “ will burden the taxpayer with the most expensive patients while the private plans take the profitable healthy younger patients. We have let this happen with FedEx and the Postal System, and private charter schools and public schools. The tax-supported option ends up with the mandate of accepting the part of the market that is least profitable.

We all know that the health care mega-corporations and industry groups will promise *anything* now, like a person being waterboarded. Five years from now will they be so devoted to the health of every American? No chance. And once this process is over, we are stuck with it—there will not be the political will to make substantial changes for another generation or more.

Mind you, I don’t think there’s much chance of a single-payer option coming to pass. American politics runs on money, and who’s got more of it than the “medical-industrial complex”? Americans have more passion and energy to invest in American Idol than in their own health and survival.

What the US now spends on health care

Here are some interesting figures, from the National Coalition on Health Care, a non-profit coalition bringing together “large and small businesses, the nation’s largest labor, consumer, religious and primary care provider groups, and the largest health and pension funds”, with 2 former presidents as Honorary Co-Chairs, Bush the first and Jimmy Carter. So their figures are likely to be well-researched and certainly not wildly radical.

National Health Care Spending

In 2008, health care spending in the United States reached $2.4 trillion, and was projected to reach $3.1 trillion in 2012.1 Health care spending is projected to reach $4.3 trillion by 2016.1
Health care spending is 4.3 times the amount spent on national defense.3

In 2008, the United States will spend 17 percent of its gross domestic product (GDP) on health care. It is projected that the percentage will reach 20 percent by 2017.1

Although nearly 46 million Americans are uninsured, the United States spends more on health care than other industrialized nations, and those countries provide health insurance to all their citizens.3

Health care spending accounted for 10.9 percent of the GDP in Switzerland, 10.7 percent in Germany, 9.7 percent in Canada and 9.5 percent in France, according to the Organization for Economic Cooperation and Development.4

footnotes refer to these sources:

1 – Keehan, S. et al. “Health Spending Projections Through 2017, Health Affairs Web Exclusive W146: 21 February 2008.

2 – The Henry J. Kaiser Family Foundation. Employee Health Benefits: 2008 Annual Survey. September 2008.

3 – California Health Care Foundation. Health Care Costs 101 — 2005. 02 March 2005.

4 – Pear, R., “U.S. Health Care Spending Reaches All-Time High: 15% of GDP.” The New York Times, 9 January 2004, 3.

“Infectious” vs. “contagious”

Just because we’re all hearing about H1N1 flu, and these terms are being used a lot, here’s the difference:

Infectious

1. A disease capable of being transmitted from person to person, with or without actual contact.
2. Syn: infective
3. Denoting a disease due to the action of a microorganism.

Contagious

Relating to contagion; communicable or transmissible by contact with the sick or their fresh secretions or excretions.
[from Stedman’s online Medical Dictionary]

Anthrax, for example, is infectious but not contagious. It is caused by a microorganism, the bacterium Bacillus anthracis, but it’s not “communicable or transmissible by contact with the sick or their fresh secretions or excretions”. People most often get anthrax from contact with infected hides or other animal products, and from soil where the hardy spores of the bacterium can remain for decades after being deposited by infected animals. [Such spore formation is known in only a few bacteria.]

There’s some confusion inherent in these terms because it seems that the “contact with the sick or their fresh secretions or excretions” part only applies to sick humans. You might get rabies from breathing in droplets of the saliva of an infected animal, but that is not considered to be contagion. As near as I can tell, anyway. So, since a human being with rabies doesn’t infect others, the disease is considered non-contagious.

An important factor in any contagious disease is how easily it is transmitted from one person to another. You can’t get HIV from touching the skin of an infected person, but influenza and the common cold can be transmitted that way. Shake hands with someone who just sneezed into his or her hand, and the bacteria are on your hand; when you touch your mouth, nose or eyes, the microorganisms can enter your system. TB is contagious, as is leprosy, but they are not transmitted by brief casual contact.

Right now the question about H1N1 flu is, how contagious is it? And then, how fatal is it? Influenzas mutate rapidly so the virus which seems to have originated in Mexico may be changing to something different as it spreads. Hence the reluctance of medical officials to make predictions about what is in store for the world with this disease.

An early warning system for health threats: the invaluable work of ProMED

ProMED Mail is one of the most important information resources on the net, and most of us have never heard of it. It’s an email list which describes itself as a “global electronic reporting system for outbreaks of infectious diseases and acute exposures to toxins that affect human health, including those in animals and in plants grown for food or animal feed”.

Unlike the official clearinghouses run by WHO and CDC, ProMED is, in its own words, “open to all sources” and its reports are freely available to us all. ProMED was first to raise concern about the aggressive respiratory disease spreading in China in 2003, which became known as SARS. Before the Chinese authorities had permitted their officials to report the disease to WHO, Catherine Strommen, an elementary school teacher in Fremont, California, spotted a post in an international teachers’ chat room from a concerned teacher in China describing “an illness that started like a cold, but killed its victims in days”.

Alarmed, Strommen emailed an old neighbor and friend, Stephen Cunnion, M.D., a retired Navy physician and epidemiologist who now lived in Maryland. A practical, no-nonsense man, Cunnion started searching the web. With no success, he tried a new tack—sending an email to ProMED-mail, a global electronic reporting system for outbreaks of emerging infections and toxins. After quoting Strommen’s missive, he asked: “Does anyone know anything about this problem?”

The tiny ProMED staff conducted its own web search. It, too, came up empty-handed. On February 10, it sent out to tens of thousands of subscribers a posting headed: “PNEUMONIA – CHINA (GUANGDONG): RFI,” or Request for Information.

Thus did the world first learn of SARS, the new and deadly infection that would kill 774 people and infect 8,000 in 27 countries.

From an article by Madeline Drexler in The Journal of Life Sciences.

H1N1 Reports (Swine-avian-human Influenza A)

To keep up on H1N1 flu [I agree with the pig farmers, “swine flu” sounds like your big risk is getting it from pigs and pork, not human sneezes and handshakes] check the ProMED main page. While all the media is now frothing over with “news” about this disease, some of it sounds as reliable as alien abduction accounts. ProMED is timely and scientifically accurate but understandable by non-biologists. It includes valuable, and interesting, commentary on reports and questions: “this has been reported, but here’s what we don’t know, or here are local factors that must be considered in evaluating it”.

What ProMED does

ProMED is a program of the International Society for Infectious Diseases which began in 1994. It does not simply print whatever comes in—this is an extremely well-moderated list. A group of specialists checks and filters the reports, seeks more information from local sources and other experts, and provides judicious commentary. This group also “scans newspapers, the internet, health department and government alerts, and other information sources for inklings that an infectious disease, perhaps not yet reported widely, is threatening animal, plant and/or human health.”

I think I first signed up to receive the digests back when “mad cow disease” was emerging, and have since used ProMED to follow diseases such as anthrax and Ebola.
A topic of interest to me recently concerns outbreaks of measles and mumps in Western nations due to falling rates of vaccination. And as a former zookeeper I keep up on diseases of wildlife and zoo animals, including the fungal disease threatening whole populations of wild bats in the Eastern US. ProMED also covers plant diseases (mostly of crops).

All of this, infectious diseases of humans, wildlife, and crops, is of greatly increased urgency because climate change, global transport, and destruction of wild areas all lead to the spread of familiar diseases to new locales and the emergence of “new” diseases previously only found in remote wild areas. With regard to contaminants and toxins, governments are unable to deal with this effectively due to the political power of corporations and lack f oversight in producing countries. ProMED can’t make your food and furniture non-toxic, but it can sound alarms that might otherwise be silenced.References to a topic’s prior appearances on the list are attached to current reports, and archives are easy to access. Editions in French, Portuguese, Russian and Spanish are now available.

“Each posting is limited to 25 KB bandwidth—to ensure that it slips through an old-fashioned dial-up modem in the most remote areas of the world (where new infectious threats tend to smolder). ‘We use technology that was state-of-the-art in 1994. We use email—plain-text email at that. We don’t use fancy fonts,’ Madoff says. ‘The power of the Internet is its ubiquity and speed; it’s not necessarily in all the neat things you can do.’ [from Drexler’s article cited above]

You can subscribe here.

Toxins and contaminants

ProMED also collects, evaluates, and disseminates reports of health problems related to toxins and contamination of food and medicines. These can be quite unusual. For example, the case of the toxic leather sofas in Britain:

toxicsofaleg.jpg

Photo: Effect on leg of reaction to toxic chemical contained in sofas. From BBC.

A judge [in the UK] is expected to order several retailers to pay millions of
pounds to people who suffered burns and rashes from faulty leather
sofas….

More than 1600 people claim to have been affected by the problem. Tens
of thousands more people could have burns not yet traced to sofas.
The High Street stores, along with 11 others, may have to pay more
than 10 million pounds [USD 14.3 million] in compensation and legal
costs, the shoppers’ lawyers say. They claim that makes it “the
largest group compensation claim ever seen in British Courts.”

The sofas, which were manufactured in China, were packed with sachets
of an anti-mould chemical called dimethyl fumarate to stop them from
going moldy during storage in humid conditions.

Commonly known as DMF, the toxic, fine white powder has been used by
some manufacturers to protect leather goods like furniture and shoes
from mold. Even very small amounts can be harmful.

One sofa customer, who is well aware of the health problems caused by
her purchase, is a customer who bought a leather sofa suite from
Argos in April 2007. Almost a year later, she started to notice a
rash developing on her arms and legs. After a few weeks, her skin
started flaking off. She says the irritation was so bad, she was off
work for 2 months. This customer was seen by more than a dozen
doctors, who couldn’t work out what was causing the rash.

She said: “It was very, very painful; I couldn’t sleep at night; I
couldn’t walk about; I couldn’t drive; every time I did walk about,
the skin would fall off, and I would leave a trail of it, therefore,
I couldn’t go to work.”

Reliable histories of outbreaks/events

ProMED doesn’t just present breaking news and requests for additional reports; it frequently publishes very useful summaries of what’s been learned, and what action governmental agencies have taken. For example, “Melamine contaminated food products – Worldwide ex China” and “Prion disease Update 2009 (01)” (Mad Cow Disease and its human infectious disease, the fatal “variant Creutzfeldt-Jakob disease”.

Supporting ProMED

Believe it or not, ProMED is supported by individuals, with not a penny of funding from any government. That means they are independent (remember the movie Jaws, where the city council wants to suppress news of the shark attacks?) and fast to react. They sift a lot of news from all sorts of sources, put out calls for more information, and disseminate news in a responsible way.

If the work of this group seems like something you’d like to support, here’s your chance. They’re having a brief Spring fundraising campaign. To quote their email,

Your gift funds quick information every day – The economical, low-tech computer programs we use enable us to speed ProMED to your mailboxes, to post it online where anyone can find it, , and to provide the administrative services (accounting, office space, cell phone connections, etc.) required to support a small, agile worldwide enterprise.

ProMED-mail reaches over 50,000 public health officials, students, journalists, agricultural specialists, infectious disease professionals and others around the globe. Because it is free, subscribers in more than 187 countries have an equal opportunity to know when a disease outbreak occurs — and can spring into action when necessary to prevent or minimize its spread.

If the Spring campaign is past, here’s the main donations page.

Bad Science: Housework helps combat anxiety and depression

I’m a subscriber to New Scientist, the British weekly magazine of science news for the rest of us. I subscribed to Science for a while too, because it publishes researchers’ actual articles, but decided I’d rather have more numerous reports with less math. New Scientist contains short reports and a few longer articles as well as interviews, and a great feature at the end where people write in requesting explanations for odd observations (very British, I think, in the tradition of the journal Notes and Queries (1849 – present), or letters to the London Times from country parsons reporting the first sighting of a bird).

Anyway, though I still find NS interesting and valuable, I’ve begun to feel they are sometimes sacrificing science for snappy headlines. Here’s an example that is from a while ago, but quite illustrative.

Housework helps combat anxiety and depression

FEELING down? You might be able to dust away your distress. Just 20 minutes a week with the vacuum cleaner or mop is enough to help banish those blues, and sport works even better.
That’s the message from Mark Hamer and his colleagues at University College London, who wanted to find out what benefits arise from different types of physical activity. They examined data from questionnaires filled in by almost 20,000 Scottish people as part of the Scottish Health Surveys, carried out every few years. Some 3200 respondents reported suffering from anxiety or depression, but those who regularly wielded the mop or the tennis racket were least likely to suffer, the researchers report (British Journal of Sports Medicine, DOI: 10.1136/bjsm.2008.046243).

One 20-minute session of housework or walking reduced the risk of depression by up to 20 per cent. A sporting session worked better, reducing risk by a third or more. Failing housework or sport, says Hamer, try to find something physical to do. “Something – even for just 20 minutes a week – is better than nothing.”

––From issue 2652 of New Scientist magazine, 19 April 2008, page 4-5. Abstract of original available free, entire article requires fee to BJSM.

Why we shouldn’t believe this

In New Scientist’s brief bit, there’s absolutely no evidence for a causal relationship between exercising and being less depressed. It’s an example of the frequent, but quite false, assumption that because two things are associated, one causes the other. Other relationships are quite possible. Does physical activity really reduce depression and anxiety, or are the people who actually do housework or sports simply the ones who have less severe symptoms to start with? Or is there some other connexion altogether? Nothing in the New Scientist, or the article abstract, addresses that question. But it makes an eye-catching headline, to say that housework cures depression.

To investigate the question scientifically, it is necessary to take a large number of depressed people and randomly assign them to one of three groups: an exercise group, a control group given some other task like filling in a weekly questionnaire or reading about depression, and a third group who don’t get any new activity or other attention from the researchers. (Ideally those doing the testing and analysis don’t know which group is which.) Then, at the beginning and end of the study, measure psychological state using some accepted reliable tests and see what changes. Finally, use statistical analysis to see if the changes are significant or might be due to chance. [Even after that, other factors may make the apparent conclusions false: maybe the exercise was not enough to have an effect, or during the study the country went to war and everybody stayed depressed, or the social aspects of being in an exercise group had more effect than the actual jumping and sweating did.]

No doubt such a study has been done, probably more than once; advising depressed people to get more exercise is a standard approach and insurance companies would love to fund the research to support it. Mark Hamer might have cited previous work in the full text of his article in the British Journal of Sports Medicine (which New Scientist should have read before writing their brief and provocative piece) but we readers have no way of knowing this.

In this particular case––the effect of exercise on individuals––researchers would have to be vigilant about the distortion of results due to participants dropping out or failing to comply with the activity levels. Even the method of choosing participants can affect reliability of results: if the depressed people are chosen from those who show up at clinics, their symptoms may be overall less severe than the symptoms of people too depressed even to go to a clinic.

A similar example: exercise and fibromyalgia

I have fibromyalgia, and some researchers have pronounced aerobic exercise to be beneficial for reducing the symptoms of this condition’s chronic pain and fatigue. Exercise is fundamentally a good thing, I agree. It distracts one from symptoms, adds an interest, may confer a feeling of control over one’s illness, strengthens muscles, promotes growth of new neurons in the brain, and can improve flexibility.

But. In moderate to severe cases of fibromyalgia, even mild exertion can cause greatly increased pain and exhaustion. Unlike the familiar “weekend athlete” reaction, the increased pain and fatigue may last a week or several weeks. This means that for some individuals the goal of walking briskly for a few blocks could take years to attain, since we are knocked back to the starting point when we overdo, or when something else in our lives like a cold or interrupted sleep aggravates our symptoms.

Some time ago I read a review article which gathered the results of a number of studies on exercise and fibromyalgia, and I noted that in some the dropout rate was high but wasn’t mentioned in interpreting the data. And then there are people, like myself, who would never enroll in an aerobic exercise program because we’ve “been there, done that” and it was painful and unproductive. If we’re not counted, and a high dropout rate is glossed over, then to whom do the results apply?

What can we say about exercise, then?

I am skeptical of the efficacy of exercise as a general one-size-fits-all prescription for fibromyalgia or depression. I would suggest the fibromyalgia studies really show that exercise appears to be helpful for those people able to endure it, but, while all patients should be encouraged to do appropriate activities as tolerated, there’s a need to be gradual and cautious. Some patients may never be able to attain exercise levels that make appreciable improvements to their symptoms, despite sincere efforts. (This doesn’t mean that exercise is without benefits to them, though. My level of physical activity doesn’t seem to help my pain, fatigue, or quality of sleep, but I’m much happier when I get out for a walk or a bit of gardening.) At an education class on fibromyalgia, I heard someone ask “How can I exercise when even walking around the house is too strenuous?” The reply was, “Can you get up and walk all the way around your kitchen table? Good. Start with that and work up.” Sensible advice, but actual improvement in symptoms may be a very long time in coming for that person.

For depressed people, exercise is unlikely to be harmful and may indeed help––I myself believe that it does––but there’s no evidence of that in the New Scientist account of Mark Hamer’s work.

I felt this was worth writing about for two reasons, one general and one particular. It’s a good example of how the media gives us accounts of scientific research without the details needed to evaluate them. And, invisible conditions like fibromyalgia and depression are different from most other health problems. They are regarded by many as non-ailments or personal weakness/malingering, so it is easy for “exercise may help” to become “quit complaining, pull up your socks and get on with it”. From there it’s a short step to “all these patients could feel better but they just won’t do the work necessary; they cling to their disease.”

And I have to admit that the example used, housework, was particularly galling to me. While there are people who can enjoy housework as a zen activity, or feel great satisfaction at making their floors and sinks shine, most of us (male or female) do not get much pleasure at all from it. Every time you do it, next day there it is again, dirty dishes, laundry piling up, dog hair floating across the floor. Truly, housework is never done. And, given that housework is still seen more as a woman’s responsibility than a man’s, and that women have a higher rate of depression than men, the “FEELING down? You might be able to dust away your distress” line seems offensively sexist and dismissive.