www.livingwithcrohnsdisease.com – owned by Centocor, maker of Remicade.

www.crohnsonline.com – owned by Abbott, maker of Humira.

www.crohnsandme.com – owned by UCB, maker of Cimzia.

If you’re a patient looking for information, these sites are traps. You want help, but you get ads for expensive meds. None of these websites existed until their respective owners had an FDA-approved drug ready for market, and all their content is designed to push you toward the click-through to their drug.

The drugs may help, but the ads don’t. If you want real help and support, you’re better off looking at some of the authentic* patient communities online:

www.crohns-sanity.org

www.ibdliving.org

www.ccfacommunity.org (this is not an endorsement of the CCFA)

community.livejournal.com/curecrohns

Not all the information you get from these sites is reliable, but at least the desire to help is sincere.

(*as far as I know)

The problem is that patients are filling up ERs and not being admitted to the hospital proper. That means ER docs are overworked and ER patients suffer longer waits and less attention. Some patients die. The article highlights the emerging practice at some hospitals of admitting patients and then putting them in hallways in regular wards, if rooms aren’t available. The theory – and the evidence – suggest it’s better to get them out of the way than leave them in the ER.

As far as crowded ERs go: been there, done that, got the plastic bracelet. When you show up at an ER with a 103.5*+ fever and a history of Crohn’s disease, you’re going to get IV fluids, antibiotics, maybe some sort of analgesic, and probably a CT scan. Once the needle’s in and the meds are flowing, you’re no longer an emergency – all the docs can do is watch and wait and decide whether to admit. Usually they don’t.

And for about two or three years of my life, this happened to me every few months – I would get my fever, go to the ER, spend the night, and come home the next morning. Under the circumstances, I never felt like I had any priority for a room. If I could have gone anywhere else – if I could have stuck myself and pumped the meds at home – I would have. But my fevers tended to spike late at night, usually around midnight, often on weekends. At that hour, there’s no where else to go but the ER.

Just because I’m sick enough to go to the ER, doesn’t mean I need to be admitted. For about the first half-dozen times this happened, I never got admitted. I usually spent the night in the ER and was sent home with scrips for antibiotics. This was fine – a hospital admission adds another $150 (per day) minimum to my out-of-pocket expenses.

So while I’m okay with the abstract principle behind this article, I don’t want “crowded ER” to be a factor in determining whether I’m admitted. If I had my way, there would be somewhere else I could go late at night to get IV drugs antibiotics, without bothering the ER staff. Barring that, I’m happy to sit in a chair in or near the ER, out of the way, soaking up my meds and watching the world go by. All of which is more or less a long-winded introduction to the story I want to tell.

Once, after I drove myself to the ER on a Friday night, the nurses sat me in a recliner facing the ambulance entrance. It was like living out a Discovery Channel special. At one point, the police brought in a guy in handcuffs – he had been injured in a fight. “This guy’s deaf,” the cops told the nurse, “we need an interpreter.” So the nurses treated him while some underling went to find the ASL interpreter. When the interpreter showed up, the docs started asking the patient questions, and the interpreter did his thing. In response, the patient just shrugged his shoulders angrily, so the doctor asked the interpreter, “what’s wrong?” “You have to uncuff him,” said the interpreter, “so he can use his hands to sign.” The cops looked at the interpreter, and then at one another, as if wondering whether this guy was some kind of master criminal who had figured out how to escape handcuffs and was about to unleash a criminal rampage on the ER department. Finally one of the cops shrugged, got out his key, and let the guy loose from the handcuffs. I can report that the culprit did not escape nor further resist, and was well-treated by the ER staff. After a while, the cops took him back to deaf-people’s prison.

So just think: if I had been upstairs in a hallway, I would have missed all the fun.

While trying to find the NEJM article, I came across this slideshow, put together by Dr. Mannon: IBD Therapy 2008. It’s a summary of state-of-the-art in IBD research and treatment. It’s worth a look if you have Crohn’s or UC.

That trial, by the way, was a great experience for me. If you have CD or UC – or for that matter, any other chronic disease – consider joining a clinical trial. Your volunteering not only helps get new treatments through the approval process, but also adds to our general knowledge of disease and medicine. You can find a trial near you at ClinicalTrials.gov.

A year or so before I started college, I developed a bad case of thrush – i.e. oral candidiasis, a fungal infestation of the mouth. I had thick white fuzz all over the back of my tongue, and everything tasted like mushrooms. At the time, I had no idea what it was, except that it was disgusting. I happened to be at summer camp at the time, so I went to the First Aid hut. They didn’t know what it was, either, but they told me to gargle with hydrogen peroxide. That didn’t help, so when I got home I went to see my doctor. The doctor prescribed mycelex troches – a thin candy-like wafer that dissolves in the mouth. I took five of those a day for several days and was fine.

When I was a freshman in college, I got thrush again. I knew exactly what I had and exactly what I needed, but mycelex trochees are a prescription medicine (although vaginal suppositories for the same drug to kill the same organism are not). So I had to see a doctor. I made an appointment at the student health center and was examined by a resident.

I don’t think the resident had ever seen a case of thrush before, but I told her what it was, what I needed, and what the dosage should be. She went to go check with the doctor in charge, and came back looking like death. “I have to ask you a few questions,” she said. “Have you ever had a blood transfusion?” No. “Have you ever used intravenous drugs?” No. Now she got really nervous: “Have you ever had sex with, um, well, you know, another male person?” What? “Have you ever had sexual contact with another man?”

Then I realized: she’s giving me the AIDS interview. So I asked her: “Do you think I have AIDS?” She sighed: “Well, usually that’s what’s going on when an adult patient develops thrush.” I could see the relief wash over her face as I explained how my medications had led me to be immunocompromised. She was sure I had AIDS, and she was terrified of breaking the news to me. For me, it was just an exasperating (and slightly expensive) waste of time.

Point being: Peter thinks lawyers are not socially constrained. Maybe so, but here’s an important difference: if I need a lawyer, I can represent myself. If I am charged with a crime, or need a divorce, or want to sue a negligent doctor, my access to the courts is not limited by my ability to afford legal representation. I may be far less successful without an attorney, but I have access to the system regardless.

But where medicine is concerned, I can’t write my own prescriptions – even if I know exactly what I need, and even if that drug is available over-the-counter in a different form. Physicians act as strict gatekeepers for much of the medical system; beyond a few ordinary ailments, patients are denied access to the care they need unless they have a physician’s approval.* There are good reasons for these safeguards, but that means there are good reasons for the social obligations we expect from our physicians.

If you’re a doc and feel like these obligations are too onerous, you’re welcome to take your skills elsewhere. But you can’t abandon your obligations and expect to retain the power and privileges you currently enjoy – granted you by society through government, I might add. On the other hand, if getting government out of medicine means I don’t need you to write my prescriptions, then maybe I’m for it after all.

*For those baffled by the attraction of alternative, natural, and homeopathic medicines – despite their lack of efficacy – consider the fact that they do not require prescription. That alone makes some patients feel better about their circumstances.

The culprit behind long-term health care inflation, the study reveals, is not a “who” but a what: “advancing medical technologies” combined with low productivity.

She’s talking about a report from the Robert Wood Johnson Foundation. One of their conclusions is that “Technology – not demographics or medical malpractice – is the key driver of health spending, accounting for an estimated half to two-thirds of spending growth.”

What do “advancing medical technologies combined with low productivity” look like? If you have Crohn’s disease, it means you probably started off taking prednisone (a generic, so cheap) and/or a 5-ASA like Asacol (patented, so about $350 a month). On this regimen, you still had occasional flares, and sometimes horrific side effects from the prednisone, but you got by. Today you might be getting Remicade (~$3500 a month), which controls the flares better but also leaves you susceptible to infections and rare cancers, not to mention the possibility of a severe allergic reaction to the drug itself. Meanwhile, you’re probably still taking Asacol as well. Are you doing better than you were? Maybe. Are you ten times as healthy as you were? No fricking way. Is your health care dollar much much less productive than it used to be? Definitely.

Of course, Remicade is a blockbuster for its maker Centocor, so now other drug makers are focusing their research on similar – and similarly expensive – biologics: Humira by Abbott, Cimzia by UCB, and so on. These companies are spending millions of dollars to convince patients and doctors that their drug is the bestest, but not a cent looking for a more cost-effective treatment. Efficiency just isn’t anywhere in the business model of the modern pharmaceutical company.

Fun fact: Robert Wood Johnson earned his fortune as head of Johnson & Johnson. In 1998, right after it launched Remicade, Centocor was bought by Johnson & Johnson. Ah… the circle of life!

I’ll look forward to part two of Maggie’s post. In the meantime, I’m stuck wondering why Robert Wood Johnson’s parents passed up such a marvelous opportunity – why not Peter Wood Johnson? or Eberhard Wood Johnson? or Rod “Big Red” Wood Johnson? What a shame.