How worried should I be?

30 March »

worryscaleI’ve spent the last several weeks/months helping a loved one hack through the healthcare jungle, a process that involved us talking to many, many doctors. It all worked out in the end, but for a long while it was super frustrating and scary.

One thing that we learned along the way was that doctors vary widely in how they deliver bad news. One doctor could tell us “x may be a problem” and we would nearly die from fright, where another would say “x may be a problem” and we would hardly blink. It was all in the tone and body language, I guess.

I started asking the doctors, “On a scale of 1 to 10, how much should we worry?” Stuff that we would have guessed was a 7, doctors would say, “Oh, no, that’s a 2.” But, of course, some doctors needed me to set parameters: what’s a 1? What’s a 10?

Eventually, I started saying, “On a scale of 1 to 10, where 1 is The Dude from The Big Lebowski, and 10 is the Nazis’ faces melting off at the end of Raiders of the Lost Ark….” So that’s what’s going on here. Granted, the scale only runs from 0 to 8 – I wasn’t counting carefully when I drew the faces. And, obviously, Alfred E. Newman is a more obvious 0 point than the Dude, but the Dude is what came to mind originally.

Print out a copy and take it to your next doctor’s appointment.

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Welcome, Crohnology…

21 March »

If you are visiting from Crohnology, welcome! I hope you like what you see. (Also true for any other readers.)

I’ve gone through my archives and pulled out a few links that show my work with respect to research and related news. In no particular order:

23&Me & Me & IBD : I look into the 23&Me IBD study and conclude that it is mostly a market research project, but it can’t hurt to participate. I did.

The OHIE Bottom Line : An important study is widely believed to show that health insurance doesn’t make people healthier. The only problem is that the study only checked for heart disease and diabetes, and many commentators do not pay attention to what the patients themselves felt about their health.

Avoid Stress, Avoid Life : Some of the most widely misunderstood research in the IBD community holds that stress makes our diseases worse. But two major studies showed that is not the case. More to the point, if stress made IBD worse, then high doses of prednisone would also make it worse: because pred is an analog for human stress hormones. I urge folks with IBD to not avoid life, just because they think they have to avoid stress.

The Kids Are Alright (+/-10%) : I sneaked into a medical library and downloaded a bunch of articles on IBD genetics to show how the disease is heritable and what the risks are for people with IBD thinking about having children. I was so happy with the results, I decided to have a kid.

Boring Econometrics Post : I point out that an article being used to describe how patients make bad decisions about their care misses a key methodological step, and ignores the more immediate problem that patients often get bad information for these sorts of decision.

Cars Kill More People Than Pain Meds : My quixotic quest to counteract the backlash against humane pain treatment, by pointing out that the much-touted epidemic is not that bad.

Kiss Your Worms Goodbye :  I discuss the disappointing results of the Coronado Biosciences helminth trials, which didn’t last long enough to be good IBD science.

Can’t Be Satisfied : I point out that a study on how happy people are with their ostomies  – a paper sometimes used to show how sick people are irrational – ignores the importance of patients’ sense of hope for a better life.

Hope this helps. Email me if you have any questions.

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Still On Not A Vacation

26 November »

I’m still on a hiatus from blogging – although I broke the lull a couple times for things that needed saying. Otherwise, I’m still too busy to keep it going. If you’re a regular reader (hello? hello? helloooo?), I apologize.

Just to be candid, I’m having a bit of a crisis in terms of purpose and direction. I’m not sure I’ll ever have enough time to blog regularly. Part of what I am doing is trying to figure out my next steps: whether I want to put a lot more energy and effort into my blog, or not. I’m leaning pretty heavily towards ‘or not’.

You can friend me on Facebook, if you want a notification of my next post.

 

 

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Hooking Up In a Hill-Rom: What Red Band Society Gets Wrong About Hospital Sex

6 November »

RedBand

So there’s this show, the Red Band Society, all about young people with good hair and bad diseases, living together in a hospital. They talk, hang out, hook up, and wrestle with mortality – all to a marketable soundtrack.

You would think that – as someone formerly young, with good hair and a bad disease, who once hooked up in a hospital – I would love the show. But I hate it. It hurts me to watch it. Imagine how black Americans might feel watching a show about a hip, fun slave plantation: thatʼs roughly how I feel watching The Red Band Society.

I originally wrote this post with the goal of placing it on some other online site (i.e. getting paid), but that has not worked out. It turns out that no matter how click-baity my title, the actual reality of hospital sex is too weird for most people — which should make Red Band Society an even bigger problem for people like me. It is amazing to me that this show has 8/10 on IMBD, and an even higher score on TV.com; amazing, but also very, very frustrating.

Sure, itʼs television: most shows arenʼt realistic. I can accept that. I can overlook the spacious private rooms, filled with guitars and art supplies. I can ignore the fact that none of the patients has an IV line in their arm. I can even get past the criminal HIPAA violations – against minors, no less.

Thatʼs not my problem with The Red Band Society. My problem is that it relentlessly pimps a myth about sick people: that we canʼt be normal.

For starters, the show is set in a hospital. The narrator – somehow in a coma – says that living in a hospital is ʻsort of like going to a boarding schoolʼ. Thatʼs wrong: hospitals are more like prisons than schools. Nothing about a hospital is designed to help you live a normal life. Hospitals are for people who are so sick they canʼt do anything else except be sick – which is almost none of the characters in Red Band.

Take Dash, the charismatic Fresh Prince lookalike. Dash has cystic fibrosis, which is a terrible disease: your lungs fail, your guts donʼt work, you die too soon. Except Dash has almost zero symptoms. He skateboards through the halls, doesnʼt need oxygen, and sexually harasses his nurse. (Seriously: propositioning your healthcare providers is harassment. It is a terrible no-no.) A kid that healthy should be outside, living his life – not locked up in a hospital.

If Dash is sick, we donʼt see it. For every diagnosis, Red Band shows only the most focus-group friendly version of that illness. You donʼt see IV lines, you donʼt see daily blood draws, you donʼt see the machines and monitors and stool samples. The hospital in Scrubs was more realistic.

Red Band expects you to sympathize with brand-name diseases – cancer, CF, anorexia – while hiding the misery they bring. The show tells young people suffering from those diseases that their symptoms are too gross to broadcast – reinforcing the message that they donʼt belong. Meanwhile, viewers don’t learn anything real about illness, which means the show is more exploitation than explanation – TV-14 inspiration porn.

When Red Band turns to romance, that exploitation goes off the charts. I am sure the series was largely inspired by The Fault In Our Stars – which, granted, some of my sick friends really like. But Red Band has none of the sincerity of The Fault in Our Stars, and twice the pabulum.

When you are sick, the fear that you canʼt be normal also implies that normal people wonʼt love you. This is a fear well-known to anyone young and sick. I believed it, once. At 16, I was diagnosed with IBD, and in my teens had a few hospital stays and very few dates. I thought nobody normal could love me.
And every time Red Band shows two hospital-trapped kids kissing, the show reinforces that fear. It tells sick kids that the best they can find is someone just as messed up as them. Thatʼs not only wrong, itʼs heartbreakingly cruel.

After being lonely and afraid into my 20s, I dated a young woman who shared my diagnosis. We both realized that it was not a long-term thing, but it was a thing, for a while – during which she and I both spent spent time in various hospitals.

The worst point in any hospitalization is when you feel ready to check out, but the doctors will not let you. My girlfriend was stuck for days, imprisoned by the uncertainty of her physicians. She was bored, scared, and extremely frustrated – we both were.

So we did it in her Hill-Rom hospital bed. Not all the way – ʻthird baseʼ, I guess, and it was not all that fun. It certainly was not prime-time romantic. What it was, more than anything, was a ʻfuck youʼ – to the hospital, to the doctors, to our broken bodies.

Let me be clear: we did not have sex because of the hospital. We had sex despite the hospital. We had sex because we wanted to be normal. And what I got from that relationship was the confidence – sick or not – to insist that I do belong.

The creators of Red Band will never get us hooking up in the hospital, not what it meant or why it matters. You canʼt, not without the pain and desperation and fear of that place. Thatʼs what viewers of The Red Band Society will never see, and never understand.

Instead, the show gives its audience a picture of illness not merely inaccurate, but also harmful to the young people it claims to portray. By locking up its characters in a hospital, by hiding their illness, by forcing them to kiss each other, The Red Band Society drums out the message: sick people arenʼt normal. They do not belong.

Until recently, sick young people were invisible to pop culture. So we need shows – and books and movies – about sick young people. We need shows about young characters living lives that matter, despite awful diseases, to help us understand those lives.

But The Red Band Society is so wrong that it hurts.

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Why We Don’t Have To Be So Afraid of Suffering That We Attack Other People’s End of Life Decisions

12 October »

Brittany Maynard has terminal brain cancer, and intends to end her life by medical means very soon. She is using the last months of her life to advocate for ‘death with dignity’ (DWD) laws, which allow people with terrible prognoses to die peacefully and painlessly at the time and place of their choosing. Loyal readers will extrapolate that I have no problem with this at all.

Kara Tippetts has cancer, too — breast cancer — but lives in Colorado, a state without DWD. Kara is also an evangelical Christian, and posted an impassioned open letter to Brittany, asking her to come to Jesus and reconsider her plans.

I am a Christian — in the same way that Shaquille O’Neal is a rapper: I like to think I’ve got the hang of it, but probably everyone else thinks I’m terrible — and so I have a natural sympathy for Tippetts’s point of view. However, I cannot defend her letter to Brittany. Whatever her intent, the letter is a poor representation of (some) Christian beliefs.

The best possible way to read Tippetts’s letter is as something like a prayer. The tone and form of the letter make it more Psalm than Epistle; the heavy use of Christianese language, the repetition of phrases — ‘hear from my heart’ in various forms — the insistent relentless optimism, the repeated mentions of prayer and praying. As a prayer, the letter has way less to do with Maynard than it does with Tippetts and Tippetts’s audience. To paraphrase, Tippetts is not praying to change Maynard; she is praying to change Tippetts.

And what Tippetts is praying to change is her own deep fear of suffering and death. Tippetts faces a difficult, painful end. She is assured by her beliefs that it will also be ‘beautiful’ — but can anyone believe that 100% of the time? Her letter betrays her doubts in its insistence on her beliefs, and her indifference to Maynard’s. You can see, I think, how Maynard’s decision — the confidence and finality of it — would be threatening to someone like Tippetts, harboring those sorts of doubts. And so the least charitable — but still reasonable — way to read the letter is as a subtle attack on Maynard.

The good news: the attack fails on all fronts. The mistake Tippetts makes is starting from the end: she believes that suicide is a sin. All Tippetts really knows about Maynard is that she is planning to commit suicide, rather than suffer, and Tippetts believes that is wrong. Tippetts writes that “hastening death was never what God intended” — which suggests God has some intention in Maynard’s death that most Christians would deny.

Except Tippetts is wrong: Maynard does not think her death will count as a suicide. Maynard has been very clear in this: she does not believe she is committing suicide. Granted, that’s open to interpretation, but Tippetts does not engage that interpretation — just takes as self-evident that Maynard is going to commit the sin of suicide. Nevermind whether suicide is or is always a sin — I think not – starting at that point prevents Tippetts from having any meaningful thoughts about Maynard’s decisions. Instead, Tippetts ends up backfilling her condemnation of Maynard with really terrible theology.

For starters, Tippetts badly conflates death and suffering. She claims Maynard is afraid of dying — which is so plainly untrue that it must be projection. Maynard is fine with death. She’s even fine with some suffering: she just doesn’t want all the suffering. If Tippetts believes suffering and death are the same thing, that raises some questions about Tippetts’s own struggle with illness: will she refuse pain medicines? Will she refuse any medicine that alleviates her symptoms? The pictures of her in the hospital, of syringes, of her bald head all suggest not.

Tippetts also presents Jesus’s death on the cross  as a reason for Maynard to choose suffering, but that’s wrong at a level fundamental to nearly all Christian traditions. Jesus died on the cross specifically so that suffering no longer had any redemptive power. Suffering matters not at all to whether we are redeemed. Where Maynard’s soul is concerned, God is indifferent to whether Maynard suffers a lot or a little. Suffering does not matter — which should be awesomely liberating to folks like us, struggling with illness, because it frees us to take the medicines and go to hospitals to alleviate our suffering, without risk of damnation.

The conflation of death and suffering also helps Tippetts’s make her worst error, helpfully bolded in the original so we don’t miss it: “In your choosing your own death, you are robbing those that love you with the such tenderness, the opportunity of meeting you in your last moments and extending you love in your last breaths.” First, this is extremely wrong on the facts of the case: Maynard’s family will be there in her last moments, loving her in her last breaths. It is abundantly clear at this point that Tippetts is not paying any attention to Maynard at all.

But Tippetts also seems to be saying not only that by dying early-ish, Maynard is robbing the people who love her of the opportunity to watch her suffer, but that the love they extend her in that suffering will somehow be more valuable than the love they love right now.

This is a fantastic misunderstanding of love. It is a breathtaking statement for a Christian to make. Whatever good the letter does, this sentence undoes.

Here’s the easy thing about love: when someone loves you, you don’t owe them jack. It’s a good idea, generally, to love them back, but as a point of fact their love does not require anything from you. You don’t owe them chocolates, you don’t owe them snuggles, and you surely don’t owe them a moment of suffering. Love demands nothing from us — and this understanding of love is crucial to modern Christian appreciation of God’s love, that God loves us whether or not we love God back. God loves us whether or not we suffer. Christians call that ‘grace’, and it is basically the whole point of our religion.

Brittany Maynard’s family loves her — and will keep on loving her after she is dead, no more and no less — whether or not she suffers. Maynard doesn’t owe them a moment of pain, and it’s extremely alarming to think that the people who love her would ask for it. Her family would be no better — and probably a lot worse — for seeing her suffer when she did not want to, when an alternative exists. Again, Tippetts’s reasoning naturally implies that Maynard owes it to her family to refuse any medical intervention that would ‘rob’ her family of love in suffering — which Tippetts herself cannot defend. I am sure Tippetts’s family loves her whether or not she takes her medicine.

I am almost done, but I have one more nit to pick. Tippetts writes that doctors who prescribe DWD are abandoning the Hippocratic Oath, that “For two thousand years doctors have lived beside the beautiful stream of protecting life and lovingly meeting patients in their dying with grace.” But anyone with a cursory knowledge of medicine knows that’s terribly false: for most of those two thousands years, physicians have been just as likely to kill their patients as cure them, and often in quite painful, desperate, graceless ways. The only reason Tippetts could possibly make that claim is to comfort herself, not to persuade anyone else.

I could do this with nearly ever sentence Tippetts has written: explain why I disagree, on theology, on facts, on moral reasoning. At every step, Tippetts writes not to engage or persuade, but to comfort and defend herself. I have no problem with that sort of writing, but I think it is deeply wrong, even offensive that Tippetts misrepresents and condemnds Maynard’s struggles to make those points. I think Tippetts owes Maynard a profound apology.

Yet much as I disagree and object, I still have a smidgen of admiration for Tippetts, for trying so hard to carve out something meaningful and beautiful from her experience. I do not believe that suffering “can be the place where true beauty can be known” — as Tippetts claims — but I respect her for trying to make it so, and I hope she succeeds.

This is the thing, the deep formless terrifying thing, we all struggle with when we get sick enough to care: what does it mean? Too often, we come up with platitudes about unconditional love and the meaning of life, and claim that illness taught or gave us those gifts. That’s all bullshit. We choose what it means. We choose what we make of our illness.

Tippetts has chosen her faith, and more power to her. As a Christian, I hope — to God — she discovers the beauty and grace for which she so fervently prays. I respect her choice, because I believe God gave us the freedom to choose our meaning.

The problem is that Tippetts cannot see that Brittany Maynard has that same freedom. Maynard has made a different choice, and Tippetts refuses to respect it out of fear and confusion, and so cannot have anything meaningful or helpful to say about that choice.

Tippetts tells us how much she prays for Brittany. I don’t: Brittany knows her own heart, and seems at peace. But I might pray for Tippetts.

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Don’t Call It A Vacation

10 September »

I am taking a break from blogging for a while — not quite sure when I’ll be back. It’s not that I don’t want to write, but more of a time management thing. I have a lot going on, mostly good stuff, but it keeps me busy. Point being it’s not a vacation, but me trying to get my life in some kind of order.

I’m not really going anywhere: you can still comment on my posts, I’m still active on Facebook, and I still answer emails.

Also, League of Mortals — the most honest novel about illness you will ever read — is still available. Click on the link in the sidebar for more info and the first chapter.

 

 

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Where We Donate vs. What Diseases Kill Us

28 August »

I swiped this cool chart from Julia Belluz’s Vox article on the ice bucket challenge — subtitled “Viral memes shouldn’t dictate our charitable giving”.  I would have included the graph in my post on ice bucketing, but I only saw it today.

Keep in mind there are major causes of death missing from the chart, like stroke and accidents. It’s not that breast cancer is the fourth-worst killer — lung cancer and colorectal cancer kill more people — but that breast cancer raises tons of money where stroke and accidents don’t.

Donating.vs.Death-Graph.0

The only problem I have with the article is that Belluz takes for granted that the various charities do anything for people suffering from the disease. She quotes William McKaskill: “With ALS, he said that $56,000 would provide one quality-adjusted life year to a sufferer. On the other hand, he said, ‘the same amount of money could provide 500 quality-adjusted life years if you give money to bed nets for malaria.'” That is probably true, but it is not necessarily true that if you give $56,000 to the ALSA, that the money will be spent on an ALS patient.

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Cars Kill More People Than Pain Meds

25 August »

It is simply not true that prescription pain medicine overdoses kill more people than car crashes in the US. I keep seeing this factoid pop up, and it keeps being wrong.

Here it is on BoingBoing, in the headline; here it is on WaPo’s Wonkblog, first paragraph. Here it is on Kevin, MD — and again on Kevin, MD.

Wrong, wrong, and doubly wrong.

The most recent data available (2010) show that only 16,551 deaths were due to to prescription narcotics. In that same year, 32,885 people died in traffic crashes. Rx narcotics were just over half of car crashes. There. Done. Solved.

It is probably true — and it was in 2008 — that poisoning kills more people than car crashes, but that includes all poisonings, including illegal drugs.

Drug poisoning accounted for 36,500 deaths in 2008, of which 25% were attributed to drugs other than rx narcotics. About 35% of drug poisonings did not have an identified drug; even assuming that all those deaths were also due to rx narcotics, that’s about 27,735 deaths total. Traffic fatalities in 2008 were 37,423 — more than drug poisoning, and still significantly more than the worst-case math for rx narcotics.

So poisonings kill more people than traffic fatalities, of which drug poisonings are the major share, of which rx narcotics are definitely a large share and probably a major share.

But there is no evidence at all that more people in the US die each year from prescription narcotics than car crashes. Don’t believe it for a minute.

For more on why this comparison is important, check out my post on the Magic Number.

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23&Me & me & IBD

24 August »

I joined the 23&Me IBD study, and thought I would explain why. Short version: it’s okay to participate, but don’t expect too much.

Before we get to that, I want you to memorize something:

Genes Are Not Destiny

Try saying it over and over. Got it? Thanks.

23&Me & Me

I’ve heard of 23&Me before, but I don’t think genetic information is really useful to the average person. 23&Me’s business model seems based on the idea that genes tell us something fundamental about who we are — which is false. Has anyone not seen GATTACA? Check it out.

When Facebook friends pointed me to the IBD study, I was even more skeptical. Still, I read through 23&Me’s website and legal forms, and decided it was okay to participate. I have done a few clinical trials, and the 23&Me waivers read about right. It looks like the company is putting some effort into making this serious research.

There are real risks, however: namely, that your genetic information will be compromised. 23&Me acknowledges this. Most of my friends are open about their illness (though I was able to sign up for the study using my blogonym), but the possibility of breach is very real, and very serious, in ways that we as a society aren’t quite ready to deal with.

For example, I am pretty sure I have the gene(s) for alcoholism. An insurer or employer might use this information against me, if it were public knowledge — even though my guts can’t handle booze at all. The laws against this sort of thing are pretty weak. 23&Me is doing what it should to protect your information, but if you would be at all vulnerable to having your genetic information made public, don’t participate.

23&Me & IBD

If you do participate, keep your expectations modest. We already know a good deal about the genetics of IBD. The IBD Genetics Consortium has already identified 163 genetic associations for IBD, from a pool of 37,000 patients. 23&Me’s target is only 10,000 patients. What’s more, those are probably more rigorous than the 23&Me project: there is only so much you can do with self-reported information, without clinical information like blood work, biopsies, and endoscopy.

We also know a good deal about how the disease is passed through families — which the 23&Me study does not address. Participating in the 23&Me study will not tell you anything new about whether your kids are going to have IBD.

Keep in mind that IBD is not all genetics. A rough estimate is that IBD is 50% genes and 50% environment, but we still don’t know much about the environment half. The Hygiene Hypothesis is appealing, but needs a lot more work. This is, again, why it’s important to understand that Genes Are Not Destiny — the genes don’t make you sick without the triggers.

In fact, the more we learn about genes and the body, the less important genes are to our destiny. In recent years, scientists have made made astonishing discoveries in epigenetics — that is, the study of what affects gene expression. Genes turn on and off, depending on external inputs like food, vitamins, activity, whether you smoke, what medicine you take, how much you sleep, and so on. Genes Are Not Destiny — to an extent we didn’t understand even ten years ago.

23&Me & Drugs

So what good is the 23&Me study? Well, if you participate, be sure to have a list of all the medicines you have ever taken for IBD. The survey question spends a lot of time asking about those drugs — which I think is the real point of the study.

One of the problems for IBD treatment is that not all patients respond the same to the various treatments. Some people with CD have good results from Asacol, some people don’t. Some people with UC  have good results from Remicade, some people don’t.

One of the things going on is that IBD is a probably a cluster of diseases, beyond the two we have names for. Each disease in the cluster probably has a different mechanism for inflammation, which is why some drugs work on some people, but not everyone. The fact that there are 163 genes associated with IBD supports this: you don’t need all 163 genes to be messed up, probably just a few key genes, and those messed-up genes might vary a great deal from patient to patient.

My understanding is that we do not know, at this point, how those genes correspond to the various medications. We know there are genes associated with IBD, but not what genes make Remicade more successful in some patients. If there are clear genetic distinctions in how patients respond to various medicines, that would be useful information. That would be valuable information, especially, if you were a company looking to cut into the IBD market with two new drugs — that is, a company like Pfizer.

23&Me & Pfizer & Billions of Dollars

Pfizer has so far been cut out of the surprisingly lucrative IBD market — $4.7 billion just in the US – but they have two new drugs in the pipeline; tofacitinib and MultiStem. It’s expensive to develop new drugs, and the market is getting crowded, so Pfizer needs to know if they can find a hole. MultiStem, in particular, is likely to be crazy expensive, so Pfizer has to be confident people will pony up for the treatment.

The thing is, a survey of 10,000 patients would be valuable even without genetic information. Knowing whether there is a hole in the market for their new drugs is key to their bringing it to market. If there are genetic markers for patients who would benefit from those drugs, so much the better, but the genetic stuff is just a bonus. This helps explain why the project is limited to only U.S. patients. It might cost Pfizer a couple million dollars, but that’s an easy hedge against the billions they could lose if their drugs flop.

So the 23&Me study, as far as I can tell, is mostly a market analysis for Pfizer. If you’re a patient who chose to participate, that’s okay — especially, if like me, you’ve burned out on almost every legal treatment for IBD. We want more drugs on the market, even if we don’t plan to use them. Just keep in mind that the study is not likely to produce any real breakthroughs where the basic science of IBD is concerned.

23&Me & You

If you participate, keep your expectations modest. This study will not cure IBD.

Also keep in mind that genes don’t determine your life. When you receive your info from 23&Me, don’t go digging through it looking for bad news. I plan to glance at the ancestry info, but store the rest until a doctor asks to see it. For all we know about genetics at this point, 23&Me’s reporting might be just as valuable as a fortune cookie. Don’t get too excited.

One last time, Genes Are Not Destiny.

 

 

 

 

 

 

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Don’t Ice Bucket

22 August »

I was away from my computer for a while, and returned to find this ice bucket thing blowing up. There are a couple reasons why it’s a bad idea — one obvious, one a little more complex.

The obvious reason: diving into the latest Internet meme is a really mindless way to pick a charity. And in fact, the ice bucket thing started out with no specific charity; nominees could pick their own. ALS is no more worthy than any of the thousands of charities that could have benefited from this meme, and maybe a lot less worthy than most.

This brings me to the deeper reason not to participate: I wrote a few years ago about the problem with disease charities, that they put research ahead of the real needs of people living with the disease on a day-to-day basis. This is true for almost all disease-specific patient organizations, but — it turns out — especially true for ALS.

Case in point: Anthony Carbajal — who has been diagnosed with ALS and made his own ice bucket video. It’s really poignant, and you can tell how scared Anthony is. The fact that people are raising money for the ALS Association– the patient org for ALS — means a lot to him, which is great.

The problem is: it doesn’t do a lot for him.

Look at the ALS Associations financials: last year they raised $30 million, of which $7 million went to research and $5.2 million went to patient and community services — less than half of the money they raised. The latter category almost certainly means money spent for support groups and things like that, and probably zero for actual direct help for patients. Organizations like the ALSA don’t do that, generally.

Meanwhile, Anthony has a page on YouCaring.com, where you can give him money. Anthony may or may not already be receiving SSDI, but if he is, his healthcare is paid for. In 2001, thanks the ALSA lobbying, Congress passed a law that allows ALS patients to enroll in Medicare as soon as they start receiving SSDI payments. For almost everyone else, there is a two-year waiting period. In 2008, when the ALS had a chance to shape healthcare reform in a way the benefited all sick people —  including people with ALS — the organization sat on its hands. If you have ALS, you have the public option the rest of us don’t have, thanks to the ALSA’s lobbying.

So it makes sense that the ALSA is focused on research: the government is taking care of their patients. Figure 30,000 patients averaging $100,000 in care a year — the government could be spending as much as $3 billion a year taking care of ALS patients. Granted, not all of those will be on Medicare, so maybe it’s more like $1 billion, or half a billion — point being, $41 million is not a lot of money in the grand scheme of things. It is a lot of money for the ALSA, though — which will probably redouble its fundraising efforts next year. Dollars to donuts says the ALSA declares August as Ice Bucket Month from here on out.

But even if the ALSA helps find a cure for the disease this afternoon, Anthony is already screwed. His case has progressed to the point where he is disabled, and this is probably irreversible. It really sucks to be disabled in this country. What is the ALSA going to do about that? Probably nothing. But there are organizations right now working to protect and expand the rights of sick and disabled people.

In Anthony’s case, those organizations are helping him live a better life right now, rather than stringing him along with the promise of a cure. But Anthony — like many of us — is so conditioned by the disease charity industry towards thinking in terms of ‘cure’, that he can’t see anything else.

Giving money to organizations like the ALSA reinforces the ‘for the cure’ conditioning that does so much harm to our understanding of illness as a problem in society. Anthony won’t get his life back with a cure. Most sick people won’t get their lives back with a cure.

Sick or not, we all have to die at some point. ALS might be a particularly bad way to die, but it’s just one of many bad ways. What matters isn’t what kills us, but how we live our lives in the meantime.  We should support the organizations that help sick and disabled people live better, meaningful lives. I don’t think the ALSA is one of those organizations. I don’t think it does much for us, or for Anthony.

So I think it is perfectly reasonable, even preferable, to refuse the ice bucket challenge.

 

 

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