Dr. Carl W. Dieffenbach, head of the AIDS division of the National Institutes of Health, reacts to the $1 Million crowdfunding campaign recently launched via artist SIA’s music video FREE ME starring actress Zoe Saldana and featuring a voiceover from Julianne Moore.
He says, “It’s fake news.”
The words from Dr. Carl Dieffenbach penetrate the massive online hype about the major fundraising #ENDHIV campaign which features SIA, the campaign’s ambassador, in her music video which includes a call-to-action to donate. Other celebrities have attached to the project as well including Zoe Saldana and Julianne Moore.*
His startling assessment is not pointed at the celebrities nor the organization behind the campaign. It’s about the research of scientist, Dr. Paul, whom Dieffenbach asserts “is wrong” in his direction towards discovering the vaccine or cure promoted by the video and the campaign’s website endhiv.com. Yet, the #ENDHIV video calls Dr. Paul’s work “a promising new AIDS cure.”
It’s important to consider the opinion of world renowned Dieffenbach who has been at the NIH since 1992, and “oversees a global HIV/AIDS research portfolio of more than $1 billion and a staff of more than 150 federal employees,” according to his NIH.gov bio. He understands exactly what research is working and what theories are not panning out as expected. It’s a tight walk at times between supporting novel ideas and knowing when to stop a researcher clearly headed in the wrong direction—particularly those working on approaches that have not shown any progress.
And that was the story of Dr. Paul’s work which the NIH funded in the early 2000s with approximately $15 million to test his theory about abzymes and then, ultimately, did not renew after less than optimal study results.
“No progress was ever made,” shares Dieffenbach. “The same basic figures continued to appear in papers and it got to a point this was ridiculous, and when he got to renewing his grant, the scientific community thoroughly rejected the idea that there was an abzyme that could be induced against GP120, which was his target. The core scientific community finds him to be wrong.”
And surprisingly and a bit repulsive and offensive for the broad generalization, irresponsible ask for money and unproven assumption, Dr. Paul’s research is called ‘a promising AIDS cure’ in the music video’s closing moments by Moore in a voiceover. What proof exists to support this statement?
I ask Dieffenbach about the researcher who will directly benefit from the public giving him a no-strings-attached check for $1 million for ‘HIV research.’
“I think that he believes some day he is going to make an abzyme. Well, good for him. There is a process of peer review. The data that he presents to the scientific community is not compelling enough to let him to publish more papers or receive additional funding, is the fairest way to say it.”
Dieffenbach talks calmly, at times finding that gray area of above-reproach professionalism an expert of his caliber must maintain mixing with the passion of strongly disagreeing with the notion of Dr. Paul’s research–clearly understood by me in the pauses between the statements he provides during our interview.
It is almost as if Dieffenbach wants to really assault the potentially faulty science Dr. Paul appears to use, but he does not. He keeps his answers much more politically correct and at times what I hear between the lines of what he actually is saying, really speaks volumes to me about his uncensored opinion–but those pauses aren’t quotes. And those moments can’t be explained, in writing.
In a brief email reply from Barnett to imstilljosh.com about the scientific community questioning the research of Dr. Paul for almost a decade, a simple 9-page whitepaper from Dr. Paul was the nonprofit’s only defense. It is full of interesting graphics and images and a half page of seemingly authentic references for the information, including one scientific journal published a decade previously.
But the whitepaper is not peer-reviewed, and lacks the standard required to be an acceptable scientific document–particularly when the atmosphere of scientists rejecting Dr. Paul’s research requires ENDHIV.com to attempt to thwart some of the dissension by including a paragraph on the campaign website about winning over scientists that remain “skeptical about the clincial promise of this vaccine.”
As I thumb through this 9-page whitepaper on a call with Dr. Dieffenbach, I hear short moments of realization, discontent, and professional disagreement from the audible gasps or chuckles from the NIH expert–again moments I capture, but impossible to fairly quote or include.
Speaking about the resources section, Dr. Dieffenbach blurts, “That’s their only paper from 2004. That’s what they used as preliminary data to get their first grant. Their papers are 13-14 years old. There is nothing new here.”
And with that, it is almost like he closes the book. He isn’t impressed here. Sensing the end to my final moments with the HIV expert, I try and lighten the mood of the call a bit.
I ask, “Dr. Dieffenbach, have you or do you have plans to donate to the crowdfunding campaign for this?”
He laughs for a few moments, realizing my attempt to lighten the scientific tone of the call and my naive hope to get to his personal side.
“No.” (I hear a long pause as he prepares to remain professional in his next statement. I wait silently.) “There are infinite number of organizations that are more worthy than this one.”
I ask him to explain.
“There is nothing new or different than what they have done in the past.” Dr. Dieffenbach says. “It’s not clear to me that this crowdfunding will bring anything new or different to science.”
I quickly ask if he believes it to be irresponsible for them to be crowdfunding for research money for Dr. Paul’s theory.
“I do. I do. I do. The question I would ask the crowd is what are you putting your money into? Is there something new, that is different than what has transpired before? What is the evidence that they have that this thing works?”
I thank Dr. Dieffenbach for his time and his fair leveling with me about this subject.
Those are fair questions in my opinion, asked by Dr. Dieffenbach. Questions that remain unanswered to my satisfaction by the information I have seen thus far from #ENDHIV or from Dr. Paul. I remain unimpressed with the science attributed to Dr. Paul and am deeply concerned with the public being asked to give him a $1 million check that will have no strings attached.
So, I am not supporting this campaign financially and I call on #ENDHIV to halt this fundraising campaign until such time that Dr. Paul presents peer-reviewed material that would demand any money or consideration at all–specifically something so meaningful as to need $1 million.
We all want to find a cure and vaccine, but not every path, campaign, or scientific theory shows promise. We have to decide who gets our money or who’s approach is just not the right course.
Are you supporting this campaign financially?
*an earlier version of the article failed to mention the additional celebrities involved in the music video from artist SIA.
ENDHIV® is the registered trademark of Abzyme Research Foundation. imstilljosh.com is not associated with or sponsored by #ENDHIV.