Remember the ALS Ice Bucket Challenge? Wonder where the $$$ went?? #TBT

Around this time last year, all of your news and social media feeds were probably covered with people doing or talking about the ALS ice bucket challenge (Throwback Thursday to CauseScience challenges). What ever happened to the hundreds of millions raised for ALS awareness and research?? CNN.com reports this week on what at least one ALS charity, ALS Association, has done with its millions of dollars.

One summer later, the ALS Association says about 40% of the ice bucket money, $47.1 million, has been spent or budgeted toward specific purposes. In time, it says the plan is to pour all $115 million back into five main spending buckets.

Bucket #1: $77 million for ‘research’

Bucket #2: $23 million for ‘patient and community services’

Bucket #3: $10 million for ‘public and professional education’

Bucket #4: $3 million for ‘fund-raising’

Bucket #5: $2 million for ‘external processing fees’

Check out the CNN article for more of a description for each spending category, especially the research section! Overall, it is truly amazing how much money was raised, not to mention the awareness of having this tragic disease all over news, media, and social sites!

Check out this ALSA video while you’re at it!

Does less money encourage scientists to cut corners?? Richard Harris reports for @NPR

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We at CauseScience have certainly been WOWed by the terrific reporting by Richard Harris and NPR on current issues in biomedical science over the last week! However, the article above on NPR from Richard Harris seems considerably less supportive of scientists. The article points out some very real issues that have arisen due to funding cuts in terms of patients involved in clinical trials. However, to me, the article also insinuates that funding cuts have made scientists lose their scientific integrity (cash-strapped scientists cut corners).

There’s a funding crunch for biomedical research in the United States — and it’s not just causing pain for scientists and universities. It’s also creating incentives for researchers to cut corners — and that’s affecting people who are seriously ill.

Take, for example, the futile search for drugs to treat ALS, better known as Lou Gehrig’s disease. The progressive, degenerative disease of the brain and nerve cells has been the focus of recent publicity, thanks to the Ice Bucket Challenge.

Harris is 100% correct on the negative impact of the funding cuts over the last decade that hurt researchers, universities, and patients (as he has examined in many of his other great articles). Most researchers are strapped for cash AND time, and have had to spend more and more time trying to get cash. Therefore, scientists cannot do all of the experiments they would like to, and so experiments get prioritized. This means that in some studies, crucial experiments (or replication/validation) can’t be performed to the highest standard due to lack of time and money and other resources.

But… there is a big difference between scientists not having time and money to correctly execute experiments, and scientists ‘cutting corners’ and overselling results to get ahead. The vast majority of scientists want to perform high quality research that will benefit patients. Harris correctly points out that replication is an issue in ALS research, as well as in ALL fields of biomedical research (see CauseScience posts about retractions, fraud, and research misconduct). And while it is true that as funding becomes harder to get, scientists are under more pressure to sell their science, the proportion of scientists committing actual fraud, misconduct, and retracting papers, is a tiny minority (that is starting to be addressed). And as far as careers where there is true fraud going on, society is detrimentally affected much more by many others compared with scientists (ahem: politicians, wall street, etc).

The emphasis of the article should be that patients become vulnerable when scientists do not have ADEQUATE funding. Emphasis on funding, not on scientists cutting corners.

Additionally, in my biased opinion, Harris’ use of ALS research is a terrible example. If only because the ‘futile search for drugs to treat ALS’ predates any current or past crunch on biomedical funding.

Most of the experimental ALS drugs, it turns out, undergo very perfunctory testing in animals before moving into human tests — based on flimsy evidence.

Recent funding cuts have little to do with the ‘very perfunctory testing in animals before moving into human tests’ when it comes to ALS research and ALS clinical trials. Until the recent explosion in genetic and molecular findings in ALS, very little was known about ALS, and clinical research was based on a relatively poor mouse model representing only a small fraction of ALS cases. The amount and stringency of drug testing done in this model before moving into humans has not undergone dramatic changes with funding cuts. While this may seem like ‘bad’ research, it was a whole lot better than no research. Especially when you consider the extremely short survival time of ALS patients, which creates a constant ‘race’ to find a cure. Case in point, the Ebola treatments and vaccines that were recently fast-tracked by the NIH and FDA with rather limited preliminary data. This isn’t an ideal way to perform science, but should it be considered cutting corners?

Harris notes the only positive aspect of these failures to translate treatments into patients, and that is increased stringency in taking drugs to humans.

Landis has since added new guidelines that scientists must follow before the neurology institute will fund large drug tests on people.

“There are now clinical trials that would have been funded five to seven years ago which won’t be funded until the preclinical studies are done in a way that is actually believable,” she says.

In principle, this should help scientists focus on more promising therapies.

It is great that NIH and NINDS are emphasizing solid preliminary research before moving into human trials. It would be great to see potential drugs validated using the best experimental designs and replicated by multiple groups, but that requires a financial commitment that has not always been available.

Most scientists do not want to cut corners, do not want to negatively impact patients, and certainly do not expect glory or fame. The vast majority of scientists want to learn something new and help people and society. Lastly, there is not only a desperate need for scientists to communicate and sell their research for their own funding, but even more importantly to generate public and political support for science funding. Harris’ inclusion of ALS, which is not the best example, but definitely a trending and popular one, demonstrates the ease with which we slip into trying to sell a good story. Scientists and writers beware.

Cory Booker stands up for science!

A short post by NJ senator Cory Booker, Stop Shortchanging medical research funding.  Along the same lines as my previous post, I couldn’t agree with you more senator!  It’a always great to have politicians championing scientific progress and research.  It’s even better when they advocate for better FUNDING.  Wahoo!

Investing in the National Institutes of Health is the fiscally responsible course. The rigors and rewards of basic economic analysis that any private-sector operation would abide by are lost right now on many Republican House leaders who extol the virtues of fiscal responsibility. What’s more, public and private spending on health care will actually increase over the long term as we fail to adequately fight diseases and limit the impact of illness.

Now more than ever, Washington needs to reflect this activist spirit and common-sense compassion. We can even do it without dumping water over the 535 heads of Congress, though that’s something I’m sure the American public would like to see.

If you support scientific research, then Stephanie Gupton’s #ALSIceBucketChallenge is the best one yet!! #science

Stephanie Gupton, Assistant Professor in the Department of Cell Biology & Physiology at UNC, took the ALS Ice Bucket Challenge, but in a very different way and for very different reasons. While CauseScience fully supports the ALS Ice Bucket Challenge, we have also posted about how the challenge highlights the recent struggle for funding for ALL scientific research. Kudos to Dr. Gupton for starting the ‘new’ Ice Bucket Challenge for awareness of the horrific state of science funding. Go ahead and start posting your ice buckets!!!

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In response to the ALS ice bucket challenge I would like to show you my ice bucket for basic science research. Unfortunately, I am stuck in my office, writing grant after grant to fund my lab, and have no time to actually be at the lab bench and perform experiments. So instead this is a picture of my graduate student’s ice bucket. My lab does basic research to find out how neurons, the cells in your brain that signal and mediate your behavior, learning and memory, acquire their functional shape during embryonic development. This is basic research that seeks to define fundamental cell processes. While it isn’t directed toward curing a specific disease, our hope is that a better understanding of how neurons develop and function will be the foundation for future therapeutic improvements and understanding of neurodevelopmental syndromes, neurodegeneration, and nerve injuries.

www.unc.edu/~sgupton

Today, a generation of scientific explorers is unable to launch research programs due to inflation and federal budget cuts. As time goes on there will be fewer and fewer stories like these to tell, and progress managing health challenges will slow. Everyone, scientist or not, can be a good citizen and let their representatives in Congress know how important basic, foundational research funding is to scientist and non-scientist alike. Make a phone call to your senators and representative. Write them a letter. Here’s a link to get you started:
http://capwiz.com/jscpp/issues/alert/?alertid=63296631&PROCESS=Take+Action

#ALSIceBucketChallenge has raised over $88.5 million for ALSA, averaging $9 million per day!!!

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The ALS Association (ALSA) reports that they have raised $88.5 million from the ALS Ice Bucket Challenge. The viral marketing campaign has taken over social media, raising not only money for ALS research and care, but also awareness of the orphan disease. While ALSA is certainly the primary beneficiary of donations from the Challenge, other ALS charities have also benefitted. See previous CauseScience posts about the ALS Ice Bucket Challenge, including our videos and our take on the ‘controversy’.

As of Tuesday, August 26, The ALS Association has received $88.5 million in donations compared to $2.6 million during the same time period last year (July 29 to August 26). These donations have come from existing donors and 1.9 million new donors to The Association, which is incredibly grateful for this tremendous outpouring of support.

“We are simply awe-struck at the incredible generosity that has poured forth to help fight this disease,” said Barbara Newhouse, President and CEO of The ALS Association. “Words cannot express how grateful we are to the nearly two million people who have donated and even more than that who have likely taken the challenge. You have all made an incredible effort in the fight against this disease.” 

Just one week ago, donations totaled $22.6 million. In just seven days, donations have skyrocketed by an average of $9 million per day, now totaling $88.5 million.

August is National Immunization Awareness Month: ~3 million preventable deaths a year #BodyHorrors

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Rebecca Kreston has written a terrific post on Body Horrors blog about the under-appreciated importance of vaccines and the lives they could be saving

Unbeknownst to many of the public, August was National Immunization Awareness Month. I know, I know: it’s been overshadowed by some very exotic and thrilling headliners this month. The Ebola epidemic blazing defiantly in West Africa. The jaw-dropping videos shown on Discovery Channel’s “Shark Week.” The ALS Ice Bucket Challenge clogging everyone’s social feeds. Vaccines are just not as sexy or as flamboyant as these issues. 

Kreston breaks down the numbers of deaths caused by ‘news-worthy’ killers compared to the number of deaths caused by diseases that can be prevented with vaccination.

But here’s the thing: Vaccine-preventable diseases kill an estimated three million people every year, with half of those deaths in children. That is five-hundred times the number of people who die every year from the devastating, progressive neurological disorder that is amyotrophic lateral sclerosis (ALS) (around 6000 deaths every year). That is seven-hundred-and-fifty-thousand times the number of people killed in shark attacks (about 4 deaths every year). So far, the Ebola epidemic has killed 1350 people in West Africa (as of August 22, 2014).

The post breaks down and explains diseases that cause thousands to hundreds of thousands of deaths a year and can be prevented through vaccination. Read the post and educate yourself!

Ohio diocese is against #ALS #IceBucketChallenge for ALSA due to stem cell studies #ridiculous #headslap

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Apparently not everyone is happy about the ALS Ice Bucket Challenge and the more than 30 million dollars it raised for the Amyotrophic Lateral Sclerosis. Apparently, a Catholic diocese in Ohio disagrees with the fact that ALSA funds research involving embryonic stem cells

A Roman Catholic diocese in Ohio is discouraging its 113 schools from participating in the ice bucket challenge to benefit the ALS Association, saying the group’s funding of embryonic stem cell research is “in direct conflict with Catholic teaching.”

Jim Rigg, superintendent of Catholic schools for the Archdiocese of Cincinnati, told the schools in a letter Tuesday to “immediately cease” any plans to raise funds for the association or to instead direct donations to another organization that combats ALS, a progressive neurodegenerative disease also known as Lou Gehrig‘s disease that causes paralysis and almost certain death.

This is despite the fact that ALSA only funds a single embryonic stem cell study (which the church is against), and funds many many studies using adult stem cells (approved by the Catholic church). The money for funding the embryonic study is also specified from a single donor.

Carrie Munk, a spokeswoman for the ALS Association, said her group largely funds adult stem-cell research but does fund one study involving embryonic stem cells using money from one specific donor.

She said all donors to the ALS Association can stipulate where their money goes and can ask that it not pay for embryonic stem cell research.

I guess it is good that the diocese is encouraging donations to other ALS charities, but still not impressed.