Seth Rogen Discovers Jokers in Washington, DC: The Need for an ACT-UP for Alzheimer’s

Hollywood’s Seth Rogen learned a valuable lesson in Washington, D.C. last month: compared to Beltway politicians, even actors look sincere. In fact, Rogen, famous for movies such as This is the End and Knocked Up, came to Washington with an achingly sincere message: he was highlighting the tragic reality of early onset Alzheimer’s disease, which has afflicted his mother-in-law and over five million Americans. 

As Rogen declared in his Capitol Hill testimony, “Lauren’s father and a team of caregivers dedicate their lives to letting my mother-in-law be as comfortable as she can. They would love to do more, but can’t, because unlike any of the top 10 causes of death in America, there’s currently absolutely no way to prevent, cure, or even slow the progression of Alzheimer’s Disease.”

Rogen’s appearance garnered a lot of attention: NBC Nightly News carried a report, and he was a guest on MSNBC’s Hardball. Headlines from news accounts included, Seth Rogen uses humor to urge lawmakers to fund Alzheimer’s research” and “Seth Rogen gives powerful Alzheimer’s speech at Senate hearing.” In other words, there was real public interest in what he had to say.

In addition, Rogen made a big splash in social media, with over 63,000 Facebook “likes” and over 9,000 shares, hitting 12th place on Google’s “Hot Searches.”

Yet there was more. Although Rogen formally testified before the U.S. Senate’s Appropriations Subcommittee on Labor, Health and Human Services, only two of the 18 Senators on the subcommittee were on hand for the hearing. In other words, some 90% percent of the subcommittee’s membership didn’t show up for a committee hearing. In fact, at least one Senator, Mark Kirk of Illinois, was on hand to get his picture taken with Rogen, which the Senator then tweeted: “Thanks to @Sethrogen for speaking out about efforts to #ENDALZ. RT if you know someone affected by #Alzheimers. ” But curiously, when Rogen actually delivered his testimony, Kirk was nowhere to be seen. In other words, Kirk showed for the “Twitter Op” and then left.

Rogen has of course seen plenty of fakery and make-believe in Hollywood, but this particular senatorial performance was too much for him. He tweeted: “@SenatorKirk pleasure meeting you. Why did you leave before my speech? Just curious.” He later said, “All those empty seats are senators who are not prioritizing Alzheimer’s. Unless more noise is made, it won’t change.”

Rogen added: “Studies show that Alzheimer’s and related dementia is the most costly condition in the United States. Yes. It’s more costly than heart disease in a country where for a dollar and twenty-nine cents, you can get a taco made out of Doritos.”

So let’s give Rogen full credit for his efforts. As a citizen and a family member, he did the right thing: he came to Washington to petition Congress and make an eloquent argument, laced, of course, with humor. And when he saw that some lawmakers were using him only as a prop, he called them on it. That is, he peeled back the curtain that veils Washington—at least for a moment.

Today Rogen is back home, and unfortunately, the media caravan has moved on. Since his February 26th testimony, the news has moved on to the Ukraine, the winter weather, Ellen DeGeneres and selfies, and missing airplanes. Now, two weeks later, official D.C. would be hard-pressed to remember any details of Rogen’s testimony.

To be sure, there are many important stories in the nation’s capital and in the world, but Alzheimer’s disease (AD) is one of them. AD is a crisis. At the current rate, Rogen testified, “In 35 years, as many as 16 million will have the disease.” He added that “while deaths from other major diseases like heart disease, HIV, and strokes continue to decline, deaths from Alzheimer’s have increased almost 70 percent in the last fifteen years.”

Indeed, since Rogen’s testimony, a new study published in Neurology tells us that Alzheimer’s deaths are grossly unreported: in 2010, over half a million deaths are now attributed to Alzheimer’s—a figure that is more than six times the amount previously reported.

Last spring, the Alzheimer’s Association testified before the same Congressional Subcommittee that in 2011, over 15 million family members and friends provided over $210 billion in unpaid care; over the next four decades, caring for people with AD will cost a cumulative $20 trillion. These new findings can only increase those numbers—and the toll is not just financial, of course, but also humanitarian.

In addition, this week we learned that a new blood test can identify whether or not someone will develop AD over the next two to three years. Early detection could help identify those at risk, open new treatment options, and allow future financial planning and care. Further, the test could be easily accessible—easy to administer as well as inexpensive. Though it isn’t a cure, it’s a marvelous place to start—if we know the signs of AD, hopefully we can then learn all of its mysteries.

Still, if recent experience is any indicator, all this news—Rogen’s testimony, the new information on the AD toll, and the new blood test—will still disappear into the media memory hole. That is, Washington will find new issues to worry about and the impact of Rogen’s testimony—and his zingers—will be lost, like tears in the rain. On healthcare, for example, media coverage is generally filled by the Affordable Care Act, pro and con.

Yes, the Affordable Care Act is an important health issue, but it’s not the only health issue; the media, and the media-consuming public, ought to be able to walk and chew gum at the same time—that is, think about both insurance and cures. But for now, it seems, debates over healthcare finance have a way of crowding out discussions of actual medical science and cures.

We might further recall, for example, the fate of other laudable efforts against AD. For example, on October 27, 2010, Sandra Day O’Connor wrote in The New York Times, “Our government is ignoring what is likely to become the single greatest threat to the health of Americans: Alzheimer’s disease, an illness that is 100 percent incurable and 100 percent fatal.”

On May 25, 2009, Maria Shriver testified before the U.S. Senate’s Special Committee on Aging, “We have to put Alzheimer’s on the front burner, because if we don’t, Alzheimer’s will not only devour our memories —it will cripple our families, devastate our health care system, and decimate the legacy of our generation.” 

That is two big media blitzes… and nothing happened. Given the O’Connor and Shriver experience, the public is right to be pessimistic. A new Rasmussen Report survey shows that only 22% of American adults think “we will find a cure for AD within the next ten years.”

Still, there is reason to be optimistic—if we wake up and realize the enormity of the threat we face. As a civilization, we have never had more financial capital, and we have never had more brain/computing power in the form of Big Data.

In other words, we have, in effect, chosen not to do anything about AD. We are parched to death in an ocean of abundance. There's a horrible, but not hilarious, joke being played out here: pathetically finite supply and near infinite capacity. Is this a crisis of the public sector? Of the private sector? Yes, it’s a crisis of both.

What Rogen and his mother-in-law need is what we all need: a citizens’ movement that consistently forces the issue of the AD epidemic on the national agenda. This requires a constant operation of highlighting the issue into the media bloodstream, both human interest and economic stories. That is, it’s AD that’s driving the Medicare trajectory, and it’s also the case that AD is costing too much in lost human capital. As of now, the efforts of Rogen, O’Connor, and Shriver seem to make a splash but cause no wave.

What we need is a mobilization along the lines of the March of Dimes, a charity that in the middle of the last century launched a two-decade effort to create the polio vaccine, which was approved and released in 1955. The result: polio has been virtually wiped from the face of the earth.

Then, in the 80s, another health crisis, HIV-AIDS, summoned an even more dramatic popular response: efforts including the AIDS Coalition to Unleash Power (ACT-UP). ACT-UP led the charge to bring about major legislative changes, medical research, de-stigmatization of those effected by the virus, and access to drugs.

So what are the lessons to be learned from ACT-UP’s demonstrations? First, their advocates were educated on the issue (i.e., complexities of FDA approval); second, they were prepared and able to convey the issues in the media; and third, most of all, they were relentless in their ability to garner media attention. They staged sit-ins at the FDA headquarters, they invaded live newscasts, they even chained themselves to the White House fence.

Was ACT-UP flamboyant? Obnoxious? In your face? Yes, all of the above—and it worked. Progress toward an effective treatment for AIDS has rocketed ahead of progress against other diseases. Squeaky wheels get greased. There are lessons in the ACT-UP success for every other disease activist. Indeed, a comic actor such as Rogen might appreciate knowing that so many of the tools of his trade can be applied to his new cure cause.

That’s how diseases are defeated.

So today, perhaps we need a new ACT-UP: call it the "Alzheimer’s Coalition To Unleash Power." It would be an operation to force an AD Cure Strategy onto the national agendas for the 2014 and 2016 elections. This type of national endeavor is how AD will get cured, and it would be a win for all. It’s the only way.

As actor Rogen said, “People need more help… Americans whisper the word ‘Alzheimer’s’ because their government whispers the word ‘Alzheimer’s.’ And although a whisper is better than the silence that the Alzheimer’s community has been facing for decades, it’s still not enough. It needs to be yelled and screamed to the point that it finally gets the attention and the funding it deserves and needs, if for no other reason than to get some peace and quiet.”

So, America, it’s time to act up. It’s time for a new ACT-UP.

Abigail T. Fox is a freelance writer and photographer. Follow her at @AbigailTFox.


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