Field Notes from a Medicare Disaster: Eight

I told myself that I must have misheard when the neurologist described the narrative arc of  Parkinsonian syndrome with one word--"worse." No one talks to patients like that, I said to myself, not in my father's day, and certainly not now when devotion to patient-centered medicine is claimed by every hospital seeking donations and governing party hunting votes.

But I'm a reporter. I have trained myself over many years to listen for that quotable line and remember it. I knew that's what he'd said because a single word reply to a reasonable query was so unexpected that it instantly lodged in my brain -- in both our brains, as I soon confirmed. My guy heard it too.

Maybe this was his way of expressing his irritation at all the Google-derived questions he had had to field from patients. If he'd asked, I would have explained that we were painfully aware that much of what we'd gleaned about Parkinson's Disease and Parkinsonian syndrome came not from scientific papers but from websites written by disease advocates. I knew that their claims are not always supported by what careful thinkers would consider actual facts. Sometimes they derived from their scientific advisors' interesting relationships to drug companies and medical device makers.

A magazine story I did on osteoporosis taught me these lessons. In the mid 1990s, osteoporosis suddenly became the new disease of the month, an epidemic about to unfold, we were told, unless....Various osteoporosis society websites claimed that, without treatment, almost half of North American post-menopausal women would suffer from fractures. But good news! A new scanning machine had become available capable of measuring the density of human bones, and--oh happy day-- two drugs were available to bolster that density and thereby hold osteoporosis at bay. Hormone replacement therapy was already used for this purpose. Merck was bringing out an old drug for this new use, a bisphosphonate.

I became interested when almost all my female neighbors, friends, and relatives of a certain age mentioned to me over a short period that they had been sent by their doctors to have their bones scanned and, as a result, were told they were osteopenic. They were told they would likely develop osteoporosis and suffer nasty fractures without treatment. Some had gone on hormone replacement therapy, some were trying the new/old drug.  That so many women were told they were at risk of fracture seemed odd to me. I asked my Dad how many osteoporosis-induced fractures he had seen in his 50 plus years of family practice. Hardly any, he said. When I told him that an osteoporosis society in the US was claiming that as many as 50% of post menopausal women were at risk of such fractures, but there was a new drug to treat it, he just laughed. Of course my Dad had a love/hate relationship with drug companies. Their salesmen took up space in his crowded waiting room in the hope that he would try their samples on his patients and then prescribe them. Sometimes he did, if he thought it helped. More often he told the salesmen to go away.

In the course of doing that osteoporosis story, I interviewed a senior orthopedic physician/scientist who led the scientific advisory board of a Canadian osteoporosis society. He had helped establish the standard for the prevention and treatment of osteoporosis. The theory of osteoporosis disease at that time was that it resulted from low bone density. Osteopenia, supposedly the precursor to osteoporsis, is still defined as low bone density when measured by the new scanners.The standard of care he and his colleagues proposed was that the best way to prevent osteoporosis was to increase bone density with a bisphosphonate or to prevent its decline with hormone replacement therapy. It was asserted that these steps would save millions of women from harm and save governments and insurance companies millions too. However: bisphosphonates have serious side effects and can do serious harm if not taken properly. Taking one properly by mouth involves sitting up straight for at least one half hour in order to avoid damage to the esophagus. Studies done later determined that bisphoshonates can induce unusual fractures in about 10% of the people who take them. Hormone replacement therapy was soon found to be less than harmless also: it increases cancer risk. But in the mid 1990s, most major hospitals quickly acquired the new bone density scanners and population-wide screening for low bone density took hold fast, just like population-wide scanning by mammography for breast cancer, another sad story of practice getting ahead of science.

The more I dug, the more I learned that the theory of loss of bone density as the cause of osteoporosis was built on sand. Medical researchers studying how bones replenish themselves told me they were still in the dark about fundamental processes and were not convinced that low bone density necessarily causes fracture. Bone architecture and bone density are not the same thing and bone architecture, they thought, might matter more to bone health. In addition, epidemiologists were just beginning to do the necessary comparative studies of different populations to establish what normal bone density is, never mind how it relates to fracture risk. The bone density machines on offer had been calibrated by using data from one population (young women from Minnesota of Scandinavian descent). Their average bone density became the norm. Bone density is known to decline with the drop-off in sex hormone production as people age and is known to decline much more rapidly again when people enter their 90s. But in the middle 1990s, various epidemiological studies were just beginning to show that normal bone density differs from healthy population to healthy population, from region to region, and even from season to season. I interviewed a leading osteoporosis specialist in Montreal who had just organized a huge, Canada-wide study which had already shown that those most at risk of fracture were not post-menopausal fair-skinned, fair-haired women, as had always been assumed, but Quebecois men over age fifty who had worked as laborers. He had been forced to fund his work from grants (with some strings) from drug companies making bisphosophonates because the federal government wouldn't give him enough to get the job done. By then, most medical journals had begun to acknowledge that funding of science by drug companies with an interest in the result tends to skew results. Yet, as he said, what choice did he have? The work had to get done. And it was the same story with the physician/ scientist who had helped set the standard for treatment. When I'd asked him, almost as an afterthought, where the bulk of his research funding came from, he'd shocked me when he said 100% of it came from drug companies.

When the magazine began to fact-check my story, the Editor found herself on the receiving end of threatening phone calls from one very unhappy advertiser, a drug company. She published anyway. Not long after, she moved on from that job.

That's why I asked that neurologist so many questions. I wasn't satisfied that the Parkinson society websites reflected good science. When the neurologist didn't appear to know that Sinemet absorption is interfered with by proteins, and that dairy is a particular problem, I thought the websites had led us astray. My guy was really happy about that. He had always put milk in his coffee and in his porridge. He likes yogurt and he really, really likes cheese. Daughters One and Two had convinced him, given what various articles and websites had to say, that he should give up these favorite foods to improve Sinemet's action. For months he had been unhappily eating cheese substitutes made from soy (with a list of additives as long as your arm), and yogurt made from coconut oil. When we got home from the appointment with the neurologist, the first thing he did was put milk in his coffee. He had real milk and real yogurt on his cereal the next day.

That same morning, I went to the drugstore to pick up a prescription. I was standing at the counter waiting for the druggist to fill it when it dawned on me: who better than the druggist to tell me whether proteins, especially dairy, interfere with Sinemet's action?

I'll have to check, he said. He went to work on his computer, typed in a few words, came back to the counter. Yes, he said, you need to be careful with all proteins.

Is that new information? I asked.

Doesn't appear to be, he said.

By the time I got home with this news, my guy had already indulged himself with some cheese without regard to the timing of his Sinemet. The next day, he had a very hard time moving. We went back to the non dairy regimen, and we timed his drug intake with care.

And I also decided to look up the neurologist's publishing history. I found no papers by him on Parkinson's or on Parkinsonian syndrome. I did find old papers by him on various other neurological subjects, in particular, epilepsy.

On our next visit to the family doctor, we double checked the druggist's statement with her. Proteins and Sinemet, not good together, right?

Oh sure, she said, that's been known for thirty years.

Please, we said. We think we need to find another neurologist. Can you write a referral to one of the movement disorder places? Western? Baycrest?

She could, but she thought they had pretty long waiting lists.

How long? I asked.

Two years, she said.