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"Americans whisper the word Alzheimer's because their government...
March 26, 2014 7:56 AM   Subscribe

...whispers the word Alzheimer's." Seth Rogen (yes, THAT Seth Rogen) gives a moving speech about funding for Alzheimer's research.
posted by Kitteh (65 comments total) 11 users marked this as a favorite

 
There are many reasons to criticize members of Congress, but it is possible, I believe, that the other members of the committee had other meetings. Was this meeting scheduled in advance? Should Rogen's celebrity status have enticed people to stay? (OK, the Kirk picture is a little obnoxious). Presumably, everyone in Congress knows about Alzheimer's and many of them have been affected by it, through friends or family.
posted by roomthreeseventeen at 8:03 AM on March 26


roomthreeseventeen, so many meetings in Congress look like this, including open floor "debates" and committee meetings, that I think it's far more likely that these people are simply not doing their damned jobs. They are perhaps going to meetings with people who are bribing them or otherwise engaging in corruption, but that's not what we send them to Washington to do.
posted by 1adam12 at 8:05 AM on March 26 [6 favorites]


I heard the speech a little while ago; it was good and everything but I'm not sure an actor is bringing anything to the table that whatever studies, reports and/or medical professionals the subcommittee would also see could not. Unless Rogen was the key guy in securing government funding for Alzheimers, I can't really fault the Senators for skipping this in favor of something else. Again, pretty good speech though.
posted by Hoopo at 8:12 AM on March 26


NIH spends about $500M/y on research it labels as Alzheimer's related, and $2.4B on the broader category of "aging". More would be better, and I know MeFi is going to go "LOL, facebook" and "LOL, stealth bombers".
posted by a robot made out of meat at 8:20 AM on March 26


Not sure how it works in the US, but in Canada such government committees are opportunities for citizens to speak to their representatives on the issue discussed, with public calls to come present.

I think anyone, well known or not, taking time to address their elected reps (when citizens have been invited to do so!) might be warranted in their disappointment if a large number of committee don't show.
posted by chapps at 8:21 AM on March 26 [2 favorites]


Not sure how it works in the US, but in Canada such government committees are opportunities for citizens to speak to their representatives on the issue discussed, with public calls to come present.

Much of the time, if you see news about a given US Congressperson giving a speech on the floor about whatever and they don't show people in an audience in the same shot, that Congressperson is giving a speech to a nearly empty chamber. There are only a couple of staffers kicking around while that Rep/Senator basically reads a speech into the record.

While this does leave you with a whole lot of images of John McCain yelling at an empty room like Grandpa Simpson, it's basically business as usual there. As roomthreeseventeen says above, a lot of the time they have other meetings/hearings/whatever.
posted by scaryblackdeath at 8:35 AM on March 26


American politicians are our representatives, and, as such, there is a long tradition of these sorts of forums, because unless the public has access to politicians, their ability to know the needs of constituents is limited to what is stovepiped to them by aids, financial backers, increasingly partisan news outlets, and lobbyists, all of whom have their own agendas that may be at odds with the constituency.

Seth Rogen has lived in the US since he was 16. He is married to an American actress. So he definately has a stake as to what happens here, despite being born in Canada. If our politicians can't even be bothered to spend a few minutes with millionaire movie stars whose tweets reach millions of followers, what concern are they going to show for the rest of us?
posted by Bunny Ultramod at 8:38 AM on March 26 [8 favorites]


If our politicians can't even be bothered to spend a few minutes with millionaire movie stars whose tweets reach millions of followers, what concern are they going to show for the rest of us?

Sure. The whole system is screwed up. They'd have more time to do their jobs if they spent less time trolling for bribes--er, campaign donations--but until we have real campaign finance reform in this country, stuff like this will be par for the course. Hell, as sad as this is, it's a pretty mild incident of our legislative dysfunction in this country.
posted by scaryblackdeath at 8:41 AM on March 26 [2 favorites]


I am not sure how many Americans know that politics involves massive absenteeism and unconcern for feedback from people outside the beltway. I am not sure what the results of this will be; possibly just cynicism. But I suppose cynicism is a step up from naivety.
posted by Bunny Ultramod at 8:45 AM on March 26 [3 favorites]


I have to say: I am a little depressed by the level of cynicism display here but get why. I mean, why should the politicians I and my fellow Americans elect give a shit about any of us really? I posted this mostly because I feel the same way about Parkinson's funding/research because I have a father who suffers from it and gets worse every year. Maybe these politicians have insanely healthy families and relatives but most of us don't. Most of us have someone we love that's very ill. And no matter the disease, I want the people I expect to listen, to care, to be there no matter if it's a famous guy behind the mike or not.
posted by Kitteh at 8:48 AM on March 26 [4 favorites]



I am not sure how many Americans know that politics involves massive absenteeism and unconcern for feedback from people outside the beltway.


There's a difference between absenteeism and skipping a hearing where a celebrity is testifying about things you already know.
posted by roomthreeseventeen at 9:07 AM on March 26 [2 favorites]


I wrote a little bit about my FIL's Alzheimer's disease here, tl;dr, my FIL with Alzheimer's is living with us and it's mostly pure hell.

Right now there is nothing to adequately treat Alzheimer's disease. The best advice my family gets is "try to keep him distracted", which frankly is very difficult day after frustrating day. How many years are we going to have to try to keep him distracted, because I'm running out of screws to sort and in a few months he's not going to be able to go on walks any more.

The NIH lost $1.71 billion during sequestration and has seen a 25 percent reduction in overall funding since 2003. That doesn't include the actual work-loss during the shut down.

Shame.
posted by Sophie1 at 9:18 AM on March 26 [12 favorites]


If our politicians can't even be bothered to spend a few minutes with millionaire movie stars whose tweets reach millions of followers, what concern are they going to show for the rest of us?

One of the major reasons for representative democracy is because you can't practicably hear from "the rest of us" on every issue. You don't necessarily have to hear from "the rest of us" or even an actor with a bunch of twitter followers on a medical issue when there are more qualified people you can hear from. Seth Rogen is surely not the only person they have heard from with an anecdote to share or a reason to want the government to put more money aside for Alzheimers research or care.
posted by Hoopo at 9:34 AM on March 26 [1 favorite]


Why does everyone assume they are not spending enough on Alzheimers already?
I don't think it should be a high priority disease. It only affects people over the age of 65 generally - there are a lot of illnesses that have wider effects on society and are probably more relevant.
posted by mary8nne at 9:39 AM on March 26 [3 favorites]


If I were in Congress, listening to the testimony of celebrities on public health issues would be very low on my list of priorities. I would hope that would be true for my representatives as well.
posted by stupidsexyFlanders at 9:39 AM on March 26 [3 favorites]


It only affects people over the age of 65 generally

I'm so glad no one close to you has had Alzheimers. I hope your good fortune continues.
posted by stupidsexyFlanders at 9:40 AM on March 26 [28 favorites]


These sort of publicity campaigns suggest that we are living in some Utopia where every worthy cause can get as much funding as the latest celebrity spokesperson requires.

Perhaps the celebrities should stay the hell out of it and let educated research grant administration bodies determine where funding is most likely to be beneficial.

Do we really need more "buzz" or "hype" around Alzheimers? how do you evaluate whether Parkinsons or Alzhiemers is more "buzzworthy"?
posted by mary8nne at 9:45 AM on March 26 [2 favorites]


Why does everyone assume they are not spending enough on Alzheimers already?
I don't think it should be a high priority disease.


Because my mother-in-law, his primary caregiver and 10 years younger is getting sick more quickly than she would have had she not had to care for him

Because they ended up having to move in with us because driving 130 miles every time there was a crisis was getting to be more than we could handle

Because my husband and I have each lost countless hours of work time to deal with crises

Because he electrocuted himself twice and can't be home alone anymore even for a half an hour despite being in fairly decent physical health

Because I am taking off the entirety of next week to move them into assisted living

Because their care is going to be $8000 per month at a minimum in assisted living and he can still dress and bathe himself independently

Because last night was the first night I laughed with my husband in two weeks

Because this is not just happening to me and my family but millions of other families and it is having a physical, emotional, mental, and financial toll on each one of those families.
posted by Sophie1 at 9:47 AM on March 26 [41 favorites]


Personal anecdotes are not usually acceptable as support for government budgeting issues.
posted by mary8nne at 9:49 AM on March 26 [1 favorite]


I don't think it should be a high priority disease. It only affects people over the age of 65 generally

Not true--what's not really talked about in these discussions, but is understood by anyone who has this in their family, is the psychic burden of growing up with this as your vision of old age. My grandmother had it for as long as I remember her, my father had it (and, given that he was her caretaker, knew exactly what was in store for him). My partner's father also has it, and I'm terrified of what will happen when we're old. Which of us will get it? What happens if both of us do? We don't have kids or even nieces or nephews to put us into a home.

I'll never forget the first time my mother gave the phone to my dad and told him my name, and he asked, "Who?" and my mother had to explain who I was; continuing to lose him in pieces, all while he knew what was happening to him, is one of the hardest things I've had to face, and I wouldn't wish it on anyone else.
posted by carrienation at 9:50 AM on March 26 [10 favorites]


Thanks mary8nne for that condescending remark. My job is entirely paid for by NIH grants, so I'm well aware of that.

Thanks though, really.
posted by Sophie1 at 9:51 AM on March 26 [14 favorites]


Three of my husband's grandparents had Alzheimer's, which puts me in terror of my own future with him. And hey, that's great that you think that personal anecdotes are not acceptable as support for budgeting issues, but it's worth it to have people remember that those that suffer from it, those that take care of them, have faces and names, and are not just numbers in some research division's bottom line.
posted by Kitteh at 9:51 AM on March 26 [4 favorites]


Here is an interesting table:

Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC)

http://report.nih.gov/categorical_spending.aspx

The problem is that going along with these sort of campaigns by celebrities suggests that Advertising and Marketing should form a part of any disease research proposal. That Scientific and Medical research should be "buzzworthy" to be funded.

That boring diseases are not worthy of funding cause they can't have a pink ribbon parade. Its just another example of the way branding is now a way of life.
posted by mary8nne at 9:51 AM on March 26 [2 favorites]


There are many reasons to criticize members of Congress, but it is possible, I believe, that the other members of the committee had other meetings.

If you're a US Senator, there are probably at least three places you should be at any point in the day. Most of which are legitimately more important than hearing Seth Rogen, who has no particular expertise other than he knows someone with Alzheimers, speak.

There's a difference between absenteeism and skipping a hearing where a celebrity is testifying about things you already know.

This too. Hearings are only very rarely about actually learning anything, and even then that would typically only happen in dreadfully boring oversight hearings where someone accidentally goes off the equilibrium path. Senators* on the committee or Appropriations subcmte already know pretty much everything that their witnesses tell them, because they have long-term repeated interactions with the relevant executive agencies and other experts. Indeed, the usual reason you would invite/subpoena someone to give testimony at a hearing is because you already know what they're going to say.

Hearings are primarily about getting information that you already know read into the record. That makes them mostly theater, but theater isn't necessarily useless. Hearings serve the purpose of demonstrating to the rest of the chamber that you learned about $SUBJECT, in much the same way that you might take a course in a skill you already have so that you have a credential you can point to.

Whoever invited Rogen to speak should have had his/her staff have a frank chat about what to expect, and why to expect it.

*Or, since "Senators" includes people as dumb as John Cornyn and Jim Inhofe, at least their staffs
posted by ROU_Xenophobe at 9:58 AM on March 26 [4 favorites]


Personal anecdotes are not usually acceptable as support for government budgeting issues.

How about 15.5 million anecdotes about 17.7 billion hours of unpaid care?
posted by srboisvert at 10:00 AM on March 26 [8 favorites]


Personal anecdotes are not usually acceptable as support for government budgeting issues.

How about the stat, quoted by Mr. Rogen, that deaths from Alzheimer's have increased 70% over the last 15 years?? I'd say it's a fairly strong educated guess that this increase is correlated to aging of the Baby Boomer generation. That generation is only just beginning to reach their elder years, so the prevelance of Alzheimer's is absolutely going to skyrocket over the coming decades. And part of Mr. Rogen's point is that society is not equipped to deal with that reality.

Also, to say "this disease mostly affects people over 65" is remarkably short-sighted. How old is Mr. Rogen? He and people like him are very much impacted by Alzheimer's because adult children of sufferers of the disease are left to try to put a system of care in place with resources and education about the disease that is inadequate at best. To take care of someone with Alzheimer's is to be constantly and furiously paddling to keep your head above water, on top of all the other obligations that middle-aged Americans typically deal with.

Yes, there's only so much money. But priorities change, and raising awareness is part of how that happens.
posted by dry white toast at 10:07 AM on March 26 [5 favorites]


Also from srboisvert's link:

Alzheimer's disease is the most expensive condition in the [U.S.]. In 2014, the direct costs to American society of caring for those with Alzheimer's will total an estimated $214 billion, including $150 billion in costs to Medicare and Medicaid.

But really, it's just buzzworthy and "well-branded".
posted by Sophie1 at 10:10 AM on March 26 [6 favorites]


There's also this

How about 15.5 million anecdotes about 17.7 billion hours of unpaid care?

Facts and figures like these will no doubt be very important, yes.

The purpose of having celebrities come and speak on issues like this is to raise the issues' profile in the media and get more public support behind them. It's not to teach new information to the senators on the committee, who would very likely be aware of such figures, having heard from professionals on the subject.
posted by Hoopo at 10:13 AM on March 26


I don't think it should be a high priority disease. It only affects people over the age of 65 generally - there are a lot of illnesses that have wider effects on society and are probably more relevant.

This statement is utterly baffling.

Alzheimer's is a big. fucking. deal. 1 in 8 people over 65 have it. Half of people over 85 have it. Half. 200,000 cases are people under 65. By 2050, the number of cases is set to quadruple as the baby boomers age. If you are a woman, the chances of you getting Alzheimer's is nearly 1 in 2.

It's one of the fastest growing diseases in this country. We don't know how to treat it. We don't know how it works. We can't even diagnose it properly until after death.

This is to say nothing of the fact that it is one of the most horrible diseases to get - both for the person with Alzheimer's and for their family. Caring for people with Alzheimer's takes an incredible amount of resources.

I don't care who is saying it. More reminders that we need more money for medical research for diseases that affect most people in this fucking country one way or another is a good thing. This is not the sort of thing that we should just assume lawmakers 'already know about.' FFS. Let's talk about Alzheimer's more. Please.
posted by Lutoslawski at 10:13 AM on March 26 [25 favorites]


The purpose of hearings is to get in soundbites you can use in your reelection commercials. Hearing scheduled with Hillary Clinton to grill her about Benghazi? You can be damn sure everyone's going to show up and sit through the whole thing. Hearing about disease that can't be used to drum up campaign donations? Empty house. So Mr. Rogen is correct in saying that the absence of senators at the hearing is symbolic of how Washington views the disease.
posted by ultraviolet catastrophe at 10:20 AM on March 26 [1 favorite]


In other words, the senators know there will be no repercussions if they don't show up at the hearing so they don't bother.
posted by ultraviolet catastrophe at 10:21 AM on March 26


Perhaps the celebrities should stay the hell out of it and let educated research grant administration bodies determine where funding is most likely to be beneficial.

Yeah, that worked brilliantly for AIDS.
posted by Bunny Ultramod at 10:26 AM on March 26 [8 favorites]


Alzheimer's is important to study and treat because people in America are getting older and we will keep getting older. The huge medical advancements of the past few decades mean that people who would have died earlier from some now-treatable thing will now live long enough to discover their genetic/environmental/whatever susceptibility to Alzheimer's, and they will die horribly from that instead.

And Alzheimer's is important to study because we still know so little about the brain and how it affects and is affected by us. There are other forms of dementia and cognitive impairment besides Alzheimer's, not all of them age related, all of them horrible. There are record numbers of veterans coming home with traumatic brain injuries who we still don't know how to put back together again. And a 22-year-old vet with severe cognitive impairments may live a long, long time past when an 88-year-old Alzheimer's patient might, long enough to exhaust any family's financial and emotional reserves.

Alzheimer's is important because medicine doesn't exist in a vacuum. Learning more about the brain in relationship to Alzheimer's means learning more that can help everybody, in ways we don't even know are possible yet. The prospect of what we still have to learn about the brain is as almost exciting as the thought of dying from Alzheimer's is terrifying.
posted by nicebookrack at 10:55 AM on March 26 [4 favorites]


My grandmother had early onset Alzheimers. There was a middle period where she became childlike though oddly she still knew she was to be respected. The middle part was the good part. Metaphorically she had lost her glasses but forgotten that she needed them to see - if that makes any sense. If you've known a person who has Alzheimers you recognize it immediately. Sometimes I'll see a family on vacation, before in SF and now in NOLA with the mom or dad being, well, not authoritative and mildly absent, and the rest of the family being very attentive. The family is taking them on a vacation because that's all they can do.

Grandma wrapped all the wastebaskets in the house in tin-foil one time she visited. When we visited one time she, quite joyfully, told me how the pillow on the couch smiled at her, and mimiced the smile for me.

Occasionally people who suffer from Alzheimers, even though they are mostly lost to themselves, have moments of lucidity. My mom told me of one time when my grandma wandered outside in the just starting rain and said, "Why does this have to happen to me?"

I hate Alzheimers.
posted by vapidave at 10:56 AM on March 26 [5 favorites]


And it's not just a disease that affects a percentage of the elderly. To some extent, almost everybody with Down's Syndrome gets hallmarks of the disease (although some, mercifully, don't display symptoms), and it tends to be early onset.
posted by Bunny Ultramod at 11:00 AM on March 26


I don't think it should be a high priority disease. It only affects people over the age of 65 generally - there are a lot of illnesses that have wider effects on society and are probably more relevant.

Hopefully many of the comments in here will adjust your understanding of Alzheimers.
posted by tehjoel at 11:01 AM on March 26 [3 favorites]


1adam12: "roomthreeseventeen, so many meetings in Congress look like this, including open floor "debates" and committee meetings, that I think it's far more likely that these people are simply not doing their damned jobs. They are perhaps going to meetings with people who are bribing them or otherwise engaging in corruption, but that's not what we send them to Washington to do."

There were nine committee hearings scheduled for this morning at 10:00 AM, while the Senate floor was also open for debate.

I'm not sure what was going on on this particular day, but the Senate does occasionally get completely swamped, and it's easily plausible that there were only two Senators who were not committed to other hearings at the time.

I'd love to reform the Senate so that the Senators were on the floor for more time, and engaged in more actual debate. I'd also love for Congress to take a more consistent pace to the work that it does (these committee hearing "crunches" are way too common, especially when there can be entire weeks with only a handful of hearings).

However, the Senators were probably not schmoozing with donors on a Tuesday. Hearings are generally moderately-well attended, except for a few boring ones that only have minor procedural items on the docket. This hearing was probably scheduled with little advance notice to take testimony from a celebrity witness. It's not necessarily the best use of the Senators' time to sit in this hearing.

Disclaimer: I used to work in a non-political office within the Senate. I didn't vote for any of them, because the American people do not think that me or my neighbors deserve congressional representation.
posted by schmod at 11:05 AM on March 26 [1 favorite]


It only affects people over the age of 65 generally

I guess you couldn't be bothered with the 6 minute speech (you know, the point of the whole post?), in which Rogen explained his mother in law was showing clear symptoms at 55 and was completely helpless by age 60.

Alzheimer's is a huge drain emotionally, financially, and timewise not just for "people over 65", but on everyone in their lives. I only had a taste of it -- my father died last year of other things before his progressed to nightmare levels -- but I'll never forget how much it hurt my heart to spend 15 minutes trying to explain to him -- a guy who had graduated from the top of his class at MIT -- how to use his phone to make a call, or the defeated look of shame on his face that it was such a struggle for him. Something actually just happened this morning that reminded me of him, and made me wish he was here, but I can't say a large part of me doesn't feel like I -- no, not just I, but my siblings, and all the people in their families -- (all under 65, and, yet, somehow, being powerfully affected by alzheimers!) didn't dodge a bullet.

Of course this is just a personal anecdote, so entirely irrelevant, I guess.
posted by the bricabrac man at 11:06 AM on March 26 [8 favorites]


Also, Aging ironically not the best committee to talk to about this issue. I don't think that there are any members of the committee who do not believe that Alzheimers research is a very important priority.

Appropriations are the ones that you should be convincing.
posted by schmod at 11:06 AM on March 26


there are a lot of illnesses that have wider effects on society and are probably more relevant.

That's Seth Rogen's point. We probably have no idea how many people the disease affects -- like, really affects, not just the old (and not-so-old) people whose brains don't work so well anymore -- because nobody talks about it. Nobody wants to talk about it. Do you want to tell people that you can't go somewhere because every member of your family has spent the last 24 hours tracking down your great-aunt who drove off and got lost? Do you want to tell people how it feels to buy adult diapers -- and how your house smells like pee? Do you want to tell people how your grandma with a master's degree in child development nursing from Yale, who raised nine children (including one with mental retardation and one she had at age 47) has no teeth and hasn't recognized you in something like 10 years, but you have to drive three hours to go sit with her in silence anyway? Or how she lives in the scary, smelly county home that is always on the verge of closing because there's no fucking way you could find the money to pay for anything else?

Even if you love someone deeply enough that this stuff doesn't embarrass you to talk about in public, it's a huge fucking bummer. Nobody else wants to hear about it, often including the people who have suffered through these experiences themselves. It's not only easy to ignore but nearly an imperative. It's that depressing.

Everyone should care about Alzheimer's and other forms of dementia because it takes a big fucking toll on the lives of everyone with a connection to someone who has the disease.

Your boss who acts like an asshole to you. Your mom and dad who seem to forget about Christmas. Your friend who always refuses your offers to hang out.

The time, money and physical and emotional energy expended by caregivers, friends and family on people with dementia -- who may not even notice it -- could power a lot of really great things. But it gets wasted on putting up with horrible shit that just makes you cry.

Have some fucking compassion.
posted by Madamina at 11:07 AM on March 26 [18 favorites]


To be fair to the senators, Seth Rogen speaking to them about Alzheimer's research is probably more for our benefit than it is for theirs. If he believes the government should spend more money on research, then speaking to elected officials and having it highly publicized means (hopefully) that more people will see this as an issue worth pushing the government on. The fact that his speech is in the public record and available on the web is the basis of his promotion.

If you don't think it's a worthwhile cause for research, then I'm guessing you have no idea what the current state of elder care is like, the prevalence of this condition, or the fact that the 65+ portion of the population is growing at an immense rate in North America, among many other places.
posted by mikeh at 11:07 AM on March 26 [3 favorites]


To be fair to the senators, Seth Rogen speaking to them about Alzheimer's research is probably more for our benefit than it is for theirs.

I'm actually wondering now if he knows that--maybe calling out the senators is less of an actual call-out and more just his way of keeping it in the news longer than it would otherwise be there.
posted by Hoopo at 11:12 AM on March 26 [3 favorites]


I don't think it should be a high priority disease. It only affects people over the age of 65 generally - there are a lot of illnesses that have wider effects on society and are probably more relevant.

Well, for me (disclosure: I'm about to be 45, and no one in my life has Alzheimer's), the truly frightening thing about this disease is it allows your body to continue almost as normal while slowly and insidiously the part that actually makes you who you are: your mind.

Add to that the fact that while your 'self' decomposes within your otherwise working body, everyone around you has to put their lives on hold in order to make sure that body doesn't destroy itself accidentally while your mind is out: feeding you, bathing you, dressing you, making sure you don't walk out in front of a car, all when you probably don't know who they are, and may even be actively hostile to them.

I would honestly rather have pain or immobility or death than the slow dissolution of my mind. So yeah, screw Alzheimer's.
posted by Mooski at 11:23 AM on March 26 [2 favorites]


I am all for funding for Alzheimer's research but I think this is an overreaction. There will always be several competing claims on Senators' time and they do need to balance this. This blogpost from a Congressional staffer explains why better than I ever could:
Senators sit on multiple committees, which often schedule hearings, markups and briefings at the same time. The Alzheimer’s hearing was at 10:00AM on Wednesday (the busiest day on the Hill). At the same time, the Finance Committee held a hearing on boosting retirement savings for low-income workers. The Foreign Relations Committee met about treaties with several foreign countries. Homeland Security held a hearing on Americans who hide assets in foreign banks to avoid paying income taxes. Judiciary met about competition and anti-trust in the wireless telecommunications market.

Further, while Senators skipped Rogen’s testimony, they didn’t skip the hearing entirely. Most of the Senators were there when the hearing started to hear from the primary witness (the Director of NIH) and make remarks, then left to tend to other commitments.

In addition to hearings, Senators have meetings with constituents who come to D.C. to talk about everything from school lunches to veterans’ benefits. Most of these folks spend their own money to travel large distances to meet with their officials for a few minutes in a cramped office or a hallway.

And even if a Senator leaves the room, if one of her staffers is there, she’s there. As The Christian Science Monitor stated, “even if [Rogen] doesn’t recognize them. [Staffers] draw up the bills, set the budget figures, and provide their bosses with the short memos that nudge them how to vote.” Staffers are their boss’s eyes and ears when their schedule demands they be in four places at once, which it always does.

It’s hard to look at the photo of a near-empty dais and not jump to the conclusion that your elected officials are falling down on the job. The public is happy to believe Rogen’s accusations because that perspective matches our already low opinion of the work that Congress does (or doesn’t do). But what would you rather your Senator be doing: listening to an actor testify about his personal experiences with a terrible disease or tending to other meetings and hearing on her calendar?

There aren’t enough hours in the day to sit through every hearing, speech, meeting and briefing that elected officials are asked to participate in. They have to multi-task, double- and triple-book their calendars and use staff to fill the gaps. So while Alzheimer’s research is a priority, Rogen’s testimony was not. His presence was meant to raise the profile of the issue (which it did), not teach subject matter experts about federal policy.

posted by peacheater at 12:27 PM on March 26 [3 favorites]


I saw this before it went all viral. Not being sure how often movie stars present to a committee it seemed polite and appropriate. His comment that implied that the government should do something about the whispers and social embarrassment seemed to miss the point and he did not seem to be asking for huge spending increases in research. It did kinda seem that he was doing the talk for his wife, although that's just fine and likely not uncommon. I noticed that there was only one or two actual congressmen but that did not seem unusual if you've ever watched cspan. The kerfuffle seemed like it was probably embarrassing for all concerned.

The recent announcement of a blood test is pretty exciting, but in a very long term sense. If it's accurate narrowing the population that can be observed scientifically will help the research, but that is still very long term for boomers.
posted by sammyo at 12:40 PM on March 26


I take it a relative of his was recently afflicted, then.
posted by jpe at 12:40 PM on March 26


Its a shame that the people holding the levers of power only leave the 'eh, we're spending enough money on that science-y stuff' bandwagon when a close experience drags them off.

And to trot out my favorite related hobby horse: I wonder if we would have found the answer in YFG yeast research by now if that awful STAR agenda hadn't strangled funding 12-ish years ago.
posted by Slackermagee at 12:43 PM on March 26


1adam12: so many meetings in Congress look like this, including open floor "debates" and committee meetings, that I think it's far more likely that these people are simply not doing their damned jobs.

Life in Congress: The Member Perspective
Key Findings:
Members focus most of their time on legislative/policy work and on constituent services—not political activities.

When in Washington, D.C., Members reported spending their time as follows:
That is according to the Congressional Management Foundation.

Compared to the "model daily schedule" the DCCC -- the campaign arm of the House Democrats -- wishes all its recruits were doing while in D.C. which isn't the goal or reality for all members of congress. (And I'm not sure what the asterisk calls out.)
posted by filthy light thief at 12:45 PM on March 26


there are a lot of illnesses that have wider effects on society and are probably more relevant.

Speaking of cold hard facts, if we look at the CDC's list of leading causes of death for the US we get the following:

•Heart disease: 597,689
•Cancer: 574,743
•Chronic lower respiratory diseases: 138,080
•Stroke (cerebrovascular diseases): 129,476
•Accidents (unintentional injuries): 120,859
•Alzheimer's disease: 83,494
•Diabetes: 69,071


Now, I don't think anyone can argue we don't spend a lot of money on heart disease or cancer treatments. The best selling drug in the world is atorvastatin, which has made Phizer billions. Similarly, strokes have most of the same prevention methods as heart disease, so same thing. Then we have respiratory disease's, which are basically all caused by smoking. And no small ink has been spilled for smoking bans, smoking taxes, and other prevention programs. After that, we have accidents, which have all sorts of causes.

And then we are to Alzheimer's.

Looking at this paper, basically last year's brochure for the pharmaceutical industry, we see glowing terms for new treatments in cancer, for heart disease, for Rheumatoid Arthritis, for AIDS, Hepatitus C, diabetes. The parts about Alzheimer’s are summed up as follows:

Since 1998, biopharmaceutical companies have made
101 unsuccessful attempts to develop medicines to
treat Alzheimer’s while, in the same period, only three
medicines have been approved. That means that
for every success, companies have experienced 34
so-called “failures.”31 (See Figure 15.) Although these
setbacks may be disheartening, they are certainly not
failures because they contribute valuable knowledge
about Alzheimer’s that can be used as building blocks
to point researchers in more fruitful directions.


The paper leads with success story and after success story, and they hide this in the middle. Given the paucity of results we are getting in the field, it appears to the disease with the most deaths, and the least amount of actual results in stopping or managing it.

Now we can argue cold moral calculus about the best bang for your buck in terms of allocating government resources for diseases. I hate using anecdotes to allocate scarce resources as much as anyone, no matter how heart wrenching. But don't be skeptical, find out! And given the commercial industry's success with most of the big killers on the chart above, and absolute failure on this one entry, perhaps a little more government funding is in order.
posted by zabuni at 12:45 PM on March 26 [1 favorite]


Sorry, not STAR as that was 2010, but whatever it was back around 2000/2002 that started the trend of looking for 'marketable' research and projects with goals related directly to various problems.
posted by Slackermagee at 12:46 PM on March 26


Not true--what's not really talked about in these discussions, but is understood by anyone who has this in their family, is the psychic burden of growing up with this as your vision of old age.

Just a few moments before I came across this mefi post, I finished listening to the Freakonomics podcast about Huntington's Disease. One thing that surprised me is how few people get the genetic testing to find out if they will develop the disease if they are at risk. I cannot imagine the emotional weight of having to carry around the knowledge that you will develop Huntington's and that there is nothing that can be done, no prevention, no treatment, no cure.

Huntington's is a different disease, although it mostly manifests as a person ages and there is no treatment or cure.
posted by inertia at 12:53 PM on March 26 [1 favorite]


jpe: I take it a relative of his was recently afflicted, then.

Yes, he watched his mother-in-law's decline.


Bunny Ultramod: If our politicians can't even be bothered to spend a few minutes with millionaire movie stars whose tweets reach millions of followers, what concern are they going to show for the rest of us?

I think this is less about how few politicians actually attend public hearings/meetings, and more an attempt to get public interest in a "boring" disease (and raise interest in Hilarity for Charity, his new fundraising group).
posted by filthy light thief at 12:57 PM on March 26


The husband has a high probability of dementia as his aunt died of it, his father has it, his mother is showing early signs and he was infected with HIV in the late 80's. Since HIV weakens the blood/brain barrier, he is likely, if he doesn't die of cancer, heart disease or motorcycle injury prior, to have something ugly cross that barrier and cause some neurocognitive decline.

He promises he won't be as difficult as his father is, but honestly, I expect no less of him and he really doesn't get much of a say in the matter of whether he is some sweet demented old man or an ornery pain-in-my-ass.
posted by Sophie1 at 1:05 PM on March 26 [1 favorite]


zabuni: "Speaking of cold hard facts, if we look at the CDC's list of leading causes of death for the US we get the following:"

How many Alzheimers/dementia patients have the disease listed on their death certificate?

Honest question. I have no idea.
posted by schmod at 1:08 PM on March 26


Yeah, it's my understanding that the dementia isn't usually the cause of death.

Dementia has affected / is affecting everyone in my family that made it past 80. I'm watching my Mom's mother forget who she is.

I wish I knew how to be hopeful about this-- is anything good being found? Maybe they do need a freaking ribbon campaign. Kinda makes me want to take up smoking again....
posted by travertina at 1:15 PM on March 26


That is a good question schmod. My mother died of early onset Alzheimer's, but I do not know if that is listed as cause of death on her death certificate.

The disease was a living hell for her and our family. I'm not sure my brother will ever get over the time he lost being her caregiver.

I used to think Alzheimer's awareness was pointless bullshit, but I'm glad Seth Rogen is speaking out about this disease. People don't like to hear about it because the details are scary and icky, but they need to hear about it so we can get more funding for research.
posted by missmerrymack at 1:22 PM on March 26 [2 favorites]


How many Alzheimers/dementia patients have the disease listed on their death certificate?

It's officially the 6th leading cause of death for older people. But because of how little we know about diagnosing the disease and the difficulties often with pinpointing a single cause of death in old age, it's tough to say for sure.
posted by Lutoslawski at 1:29 PM on March 26 [1 favorite]


FYI - mefi's own onhazier is still updating her blog on dementia called Dementia be Damned.
posted by Sophie1 at 1:33 PM on March 26 [1 favorite]


My Mom has dementia, not Alzheimer's, but I sure as hell don't care about the difference since my life is wasting away also as I take care of her increasing needs. I'm in my 50's and will not have time to recover financially after it's all done.

It's a sucky choice but one I've chosen just like so many other families out there who are looking after a loved one with some sort of malady. It's just something you do if you can. Not everybody has this option and that's an even more difficult situation.

Long term diseases have a broad impact on families and their communities so it's not simply a thing to concern a few folks.
posted by mightshould at 3:47 PM on March 26 [3 favorites]


These sort of publicity campaigns suggest that we are living in some Utopia where every worthy cause can get as much funding as the latest celebrity spokesperson requires.

Restoring the money lost to sequestration would be a great start, and is very doable.

Perhaps the celebrities should stay the hell out of it and let educated research grant administration bodies determine where funding is most likely to be beneficial.

NIH study sections are inundated with far more meritorious grant applications than they can fund. There's no daylight between funded applications and the best unfunded applications, and the distinction is being made on increasingly arbitrary factors. For example, the National Institute of Aging's current policy is to fund most research project grants ranked in the top 11 percentile by a study section of scientific experts. You could easily double the amount of funding here without any appreciable decrease in the quality of the grants.
posted by grouse at 4:16 PM on March 26 [2 favorites]


How many Alzheimers/dementia patients have the disease listed on their death certificate?

Alzheimer's as cause of death is dramatically underreported. Here's an article that talks about why:

The new study, published earlier this year in the Neurology Journal by researchers at the Rush Alzheimer's Disease Center in Chicago, revealed that the number of deaths actually attributed to Alzheimer's could be up to six times higher than experts previously thought. The numbers from the study have been startling to researchers, as it revealed that as many as 500,000 were killed by Alzheimer's disease in 2010 alone. This makes the condition as deadly as cancer. Original numbers estimated that Alzheimer's disease was responsible for 83,000 fatalities in 2010, meaning the number calculated from the new study is more than six times the amount as originally assumed.

According to the team at Rush University, the issue for the discrepancy in numbers is simple; death certificates are known for underreporting deaths from Alzheimer's and dementia. Typically when an individual dies from Alzheimer's disease, only the immediate cause of death, such as pneumonia, is listed. However, the underlying causes, such as Alzheimer's disease, are usually not listed on the death certificate.


And here's the original study.

This is precisely why this needs more attention: we have some idea how to prevent many of the top causes of death, but we're still mostly in the dark about this one.
posted by carrienation at 4:27 PM on March 26 [3 favorites]


I can't believe some of these comments about how "celebrities should stay out of it" and "he was doing it for his wife" and especially "people know about Alzheimer's already so they didn't stay for his comments."

I think he made his purpose pretty clear. He started with the anecdote about his wife, but he also talked about how he started a charity. Many people who start charities and non profits go to speak before Congress about the topic that their charity works on. There's nothing unusual about that. The point of his speech wasn't to teach people about Alzheimer's who had never heard of it, it was to ask for more funding. Yes, the fact that he's a celebrity can only help draw more attention to his cause, and good for him for doing so. I don't think he was "doing the speech for his wife,"I think he was affected years ago seeing his mother in law go through this illness and started the charity to help work toward funding for research, outreach, and awareness for the disease. I think this because that's what he says in the speech.

It's not some crazy thing for a famous actor to give a speech before Congress about an issue that affects them, even if they are Canadian. Here's Michael J. Fox doing it for Parkinson's. Fox also started a prominent charity.
posted by sweetkid at 5:16 PM on March 26 [3 favorites]


I contribute to the Michael J. Fox charity routinely because of my dad. And again, I am glad for any and all attention towards Parkinson's disease in the mainstream media and in the halls of government. Watching my mother spend the rest of her life as a caregiver for him--a role she never imagined she'd have to fill--is often times heartbreaking because there is only so much she can do. She is just one person, admittedly with the support of my sister and her husband some of the time, and it takes its toll.
posted by Kitteh at 5:22 PM on March 26 [2 favorites]


Can't remember if MeFi covered it, but Hogewey in the Netherlands is an interesting concept that I would like to see studied, adopted and expanded upon.
posted by longbaugh at 1:34 AM on March 27


and especially "people know about Alzheimer's already so they didn't stay for his comments."

I think those comments are in response to his angry tweets, not the speech. Here's all the people they heard from on Alzheimer's and the need for funding. You can see there appear to be more senators present when medical doctors or PhDs in Economics were giving talks than when Seth Rogen does. The PhDs seem to have gone over the numbers as well. I think it's fair to say they heard enough at that point that they could probably skip Funny Hollywood Actor. TBH I didn't even notice they weren't there when I first heard this speech. I really don't think it's a big deal and I'm not sure if it's a good idea for Rogen to call these Senators out--they may not want to invite him or some other celebrity back, which takes away a platform for celebrities to use their fame for a good cause.

The point of his speech wasn't to teach people about Alzheimer's who had never heard of it, it was to ask for more funding. Yes, the fact that he's a celebrity can only help draw more attention to his cause, and good for him for doing so


I agree. The speech was for people like you and I. Seth Rogen's charity is a fundraiser -- it puts on events and raises funds for the Alzheimer's Association. The whole point of this subcommittee hearing is to discuss funding for Alzheimer's. They asked him to come because he raises the public profile of this issue. The government is already on board with the message and is encouraging getting private donations as well (there are Republicans on the appropriations subcommittee, after all, you know how they love to leave things to the free market). I'm sure it is not lost on them that a lot of their voters are going to be directly or indirectly affected by Alzheimer's in a big way, more than ever, and that more money is going to be required.
posted by Hoopo at 9:50 AM on March 27


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