Letters to Peter

The Curious Case Of Louis G Buratti, The Massachusetts Hepatitis C Coalition, The Massachusetts Public Health Association, The American Liver Foundation, And The Pharmaceutical Industry: By Peter Fisher

Posted Sept. 20, 2008

When Louis G Buratti ( aka Butch, Unico Lou, and Munch among others ), briefly Chair of the Massachusetts Hepatitis C Coalition (MHCC) until his resignation early this year, died "unexpectedly" August 21, he left behind a tangled web of political, corporate, and criminal intrigue that is still being unraveled. It's impact reaches beyond the state of Massachusetts and reflects broader problems within the HCV advocacy community and among HCV stakeholders.

Buratti began attending MHCC meetings about three years ago with his fiancee and business partner, Barbara Person, a nurse. Nattily attired, and with a personality more suited for selling used cars and snake oil, Buratti schmoozed his way into gaining the confidence and support of HCV service providers, public health professionals, the American Liver Foundation (ALF) and the two principal drug companies — Roche and Schering Plough, among others — that attended the meetings. He apparently got unrestricted educational funding from the pharmaceutical industry and two medical hospitals. I was skeptical of Buratti from the beginning. His comments during meetings reflected a profound lack of knowledge about HCV and HCV advocacy and yet, because I was the only other HCV patient who regularly attended meetings (actually, Burratti was supposedly 'cured', which made him a more valuable point man for the drug industry), and have been less than collegial with the public health community, Buratti was an attractive alternative in bringing consumer leadership and "business" expertise to the MHCC. During the October, 2007 MHCC meeting, it was suddenly announced that there would be an election for Chair and Buratti was the sole candidate. Buratti was appointed and, in the lemming-like world of consensus-driven public health, people regarded me as a spoiled sport for openly questioning both the legality of the election and his suitability for leadership. I was the sole vote against him.

Problem was, Buratti was not much of a businessman. Convicted of wire fraud in 2000 for defrauding clients of close to $10 million, he was sentenced to federal prison and released in 2004, shortly before he came courting the MHCC looking for a new career opportunity. But he was apparently not fully reformed. According to copies of the Articles of Organization for G G Global Corp dated 9/28/2007 that I recently obtained from the MA Secretary of State, Buratti, who is listed as President (Barbara Person is Secretary and Treasurer) was violating the terms of his federal prison sentence by working in the "freight auditing business". The document states the "type of business in which the corporation intends to engage: Transportation consulting & auditing". Ms. Person may be an unwitting dupe caught up in Buratti's shenanigans. My guess is she got taken for a ride too.

The Massachusetts Public Health Association (MPHA), which has run the Coalition since the early 2000's after Schering-Plough came under intense criticism for running it and claiming it was "grassroots" while funding it through it's marketing division, and it's Executive Director at the time, Geoff Wilkinson, were well aware of complaints from HCV patients that Buratti was not suitable leadership material - and his criminal record of fraud was only the tip of the iceberg. Buratti's online support group was voted the worst and the most censored of all online HCV support groups. Wilkinson, who now has a cushy patronage-based position as a senior policy advisor at the Mass. Dept of Public Health, claims he spent hours reviewing Buratti's web postings. Wilkinson sent this email to a HCV patient, a nurse, who complained about Buratti and asks to remain anonymous:

Yes, I received your emails of 9/16 and 10/3. Please excuse my delay in responding. I was out of the country from 9/14-28 and am just catching up now on the hundreds of messages waiting when I returned, including yours. We have received email from another party and two phone calls, apparently from different parties, about Lou Buratti. I have spent several hours reading web postings from those messages, trying to determine if there is cause for action against Lou by the Massachusetts Hepatitis C Coalition. We can find none. It is clear than he has a criminal record. Having served his prison sentence, he is accountable to the justice system and has the right to proceed with his life.

He has not, to the best of our knowledge, threatened anyone in the coalition. He has no access to funds of the coalition, nor has he sought such access. His relationships with pharmaceutical companies and medical institutions are not part of the coalition's business. He has, to the best of my knowledge, been entirely responsible in his relationships with politicians and health care providers associated with the coalition's work. I do not have time to read every web link and blog posting that you sent, but I scanned through and read several of them. Most of them seem to be links to blogs Lou has posted, which seem factually accurate. Lou is, in fact, a steering committee member of the coalition and co-chair of its advocacy committee, and he has been productively involved in the coalition's work for some time.We appreciate being alerted to your concerns about Lou's possible objectives.

I will be leaving my position as MPHA executive director effective October 5, but I expect that people who continue to be involved with the coalition will be vigilant as a result of your warnings. Beyond that, absent more compelling evidence of a threat to members of the coalition or to the coalition's business, we have no plans to pursue this matter further. Thank you."

I think Wilkinson has it wrong. "His (Buratti's) relationships with pharmaceutical companies and medical institutions" are in fact a very big part of the coalition's business. The Coalition had a hard time surviving the initial crisis over questionable corporate ethics by Schering Plough and now this scandal happens. The real tragedy is that this state, like others, very much needs a MHCC, one that is accountable to the HCV patient community and not held hostage to the politics of infectious disease and greedy drug companies. What is most scary is that public health professionals were in bed with ALF and the pharmaceuticals over Buratti. These people don't want change. They fear it. They bought the snake oil.

Perhaps Wilkinson missed this posting by Buratti, although it is not unlike many others, full of inflated self-importance.

Date Posted: Tuesday, June 26, 2007, 11:08:20 AM

In Massachusetts I am now the “Chairman of the Advocacy Committee” for the HepC coalition and I have a host of other fancy tittles. BIG FRIGGEN DEAL! Somehow, now that I have made a little headway in this battle it makes me feel even more helpless sometimes. I got the fancy titles and busted my arse to get where I am in the HepC community but I am still not happy. Maybe that’s a good thing but right now I can not think about that.

Realistically I can pat myself on the back all day but the truth is it just took time and smoozing. That’s right smoozing. This industry isn’t much different than others. I am a great smoozer. I can wine and dine with the best of them. And yah I have balls and am not afraid to get up in front of the politicians and read them the riot act… nicely, and really that is what it takes. When I spoke at the Bio Tech Convention for the Vertex Corporation that was a huge coupe for me and I made the news and all that crap. But you know what? My fuc..ing friends are still dying and it just makes me so mad I am about to throw my lamp out the window!!!

When I die (hopefully at 100, god willing) please put on my tombstone “ He was a real son of a bitch but he fought like hell against HepC until the day he died!” If that is my legacy, I will die a happy man!
Lou, Co-host of OOB.org

Does this post sound a bit odd? Was the lamp a Tiffany? Or how about this post:

We who are healthy, we have to speak for those that are not. We that cured, we are the ones that the politicians and others won’t feel frightened shaking our hands. It is true. You tell people you have HepC and they do not want to shake hands.

Or this one from 3/25/2005, original spelling intact. In addition to having a learning disorder, Buratti apparently was a narcotic user. He was visibly under the influence the day he was appointed chair of the Coalition. I could only bite my tongue. Abraham mentored Buratti..

Big  today for "HepC Out of Bounds". Our Doctor, Dr, Abraham

George Abraham, MD, MPH, FACP

Director Ambulatory Care and Preventive Medicine
Associate Program Director
Internal Medicine Residency Program
Saint Vincent Hospital @ Worcester Medical Center
Assistant Professor of Medicine
University of Massachusetts Medical School 

 iTesttified n rearguards for reinstating Free HepC clinics in state of Mass and HepC Budgts. In the end he made special announcement that OOB and its 2000 members were responsible for the research, facts and work for his presentation, we receive quite a hand and passed out the support group pamphlets.

There were many senators and and committee leaders present, I will be looking  in the Boston papers tomorrow, this was a HUGE step for us for many more reasons I will explain latter.

Requests to Wilkinson for a full explanation of what he knew, when, and why he did not act on HCV patient community concerns about Buratti's suitability for leadership when he had the opportunity have gone unanswered. I trust his new position at the DPH is not a result of the leadership he brought to HCV advocacy and the MHCC in recent years. Asked him some time ago rather pointedly to find another organization to house the Coalition and actually greeted the news that ALF was going to take over with some relief. Sorry to see things disintegrate as they did. Apparently ALF caught wind that Buratti might not be such a good consumer frontman after all and pulled out from their agreement to take over the MHCC from the MPHA.  ALF bet the farm on the wrong horse, cut their losses, and quietly rode out of town leaving the MHCC hanging out to dry.

From: Kelly Beckett [mailto:kbeckett@liverfoundation-ne.org]
Sent: Wednesday, January 02, 2008 1:02 PM

Dear members of the Hepatitis C Coalition,

As many of you are aware the American Liver Foundation (ALF) is entering a new phase of transition as we move into new leadership. Our organization continues to strengthen and grow, but continues to require a great deal of restructuring strategy and time in order to ensure that we meet our goals along the way. As our focus shifts, we will begin to zero in on the patient. Our desire is to meet the patient at their point of individual need or crisis by providing resources tomorrow that are not available today. ALF hopes to derive resources from the research community and raise this sense of urgency to a global level. A resilient sense of urgency that is not readily available to liver disease patients today.

In order to accomplish our new goals, we must refocus our time and manpower. We have weighed all possible options and, regrettably, have come to the conclusion that the American Liver Foundation New England Chapter will no longer be able to participate as a member of the Hepatitis C Coalition.

The New England Chapter will continue to advocate for Hepatitis C state funding, but in a more direct fashion. We will work with the Department of Public Health to ensure that statewide interests are maintained. We will keep the coalition informed of our advocacy activities and hope that the coalition will continue to keep us informed as well. We are also just a phone call away to offer organizational resources when needed.

It has been a pleasure working with all of you over the past seven years. The coalition has made great strides and the American Liver Foundation was honored to be a part of this significant progress.

We look forward to future collaborations.

Sincerely,

Kelly Leigh Beckett

Beckett's email was attached to Buratti's January 8, 2008 resignation email, a part of which is below. I accept responsibility for Buratti's reference to "Emails containing insults to these entities ( ALF and the drug companies I guess...)"

"It is sad to leave the coalition but it seems as though that it is becoming increasingly difficult to work with organizations and companies that I believe are very important to HepC advocacy work. Emails containing insults to these entities and the passiveness of some coalition members to accept this is not the direction I wish to head into the future. For there not to have been outraged (sic) about this was also part of my decision making process. For this reason I choose to focus on HepC out of Bounds to continue my advocacy work".

I would like to take credit for his resignation, but there was more to it than that. Pressure from the wider HCV patient community, Buratti's own vanity and undisguised ambitions, ALF's decision to back down from taking over the MHCC all contributed to it. In the end, after years of weak leadership under the MPHA, the MHCC had nothing left in the tank and effectively disbanded with Buratti's resignation. Sadly, it has yet to be resurrected and, given the wreckage, it may never be. I appealed to MDPH CDC Commissioner Al DeMaria  Sept. 12 to call on MHCC stakeholders to revive the Coalition:

Al,

Maybe you can convince me that I have been taking the wrong tack in the Buratti/MHCC scandal and that I should not push the issue. Maybe you can convince me that it would be more advantageous to not rub it in the face of those health care professionals and service providers who never gave me an opportunity to contribute to the MHCC, and turned to an unaccomplished con-man instead. Probably not though. Hope you understand..

I think you do understand that the whole situation stinks and wish it would go away. We both know that the MHCC fell victim early on to the politics of infectious disease. Service providers and public health professionals here (and elsewhere) have failed miserably in developing an HCV advocacy agenda. And I, an agent for change they have come to fear and resent, am the only MHCC member to emerge from this not stinking like feces.

I continue to hope for the day when the MHCC can be re-born, and if given an opportunity, I'll contribute to it. I derive no pleasure in seeing it inactive or ineffective.

Please join with Dan Church and contact MHCC members to urge them to re-establish the MHCC. Tell them they need to move on because HCV advocacy cannot wait. If they do not, I will start a patient-based advocacy coalition with a more activist edge as an alternative. You know, I worked cooperatively and productively years ago in HIV and harm reduction advocacy with the same kind of folks going back 20 years in CT. I got legitimate credentials. There is no reason I cannot do it now in HCV advocacy here. But I have to be given the opportunity.

Thanks for your consideration. I look forward to hearing from you.

DeMaria promptly responded:

He was a crook, he died, he is buried. I think we should move on, focus on HCV and let the dead lie in peace. I will do everything I can to re-establish the coalition, but to be effective in advocacy, it can't be state organized or run. We need to find the organizational stakeholders who can and will do something. There will be a new executive director of MPHA soon and I think things worked well with Rachel Wilson. When the new person takes over, I can work from within the board to see if they could find the resources and commitment, making the case from history.

If DeMaria, who I have come to respect, is serious about seeing the MHCC revived within the MPHA - and they are the best suited to house it despite their track record - there needs to be some honest discussion first, and I do not see that happening because of the toxic nature of what occurred. The MPHA's credibility within the HCV patient community is seriously tarnished. Nothing can change that and Wilkinson is not talking.

First learned of Buratti's death from Donna Zucker, a hep nurse married to a liver doc with close ties to ALF who had rebutted my questions about Buratti's suitability for leadership prior to his election as MHCC Chair by pointing to his business experience. I sent this to Dan Church, the state's Viral Hepatitis Coordinator, upon learning of Buratti's death:

Daniel,

Sorry to hear about the untimely passing of Lou Buratti, former ( very briefly) Massachusetts Hepatitis C Coalition Chairperson and convicted swindler and con man.

Had no personal grievance against Lou although I was the sole voice in dissent of his appointment as Chair. I did not know of his criminal record at the time and it would not have mattered. I opposed him because he was being groomed by ALF and the drug industry to be an industry-sponsored consumer advocate as they so often do. Not only that, he was clearly not articulate or informed enough for the position. You know, if they are going to groom patient advocates, and then get public health professionals to foist them on us, you'd think they might do a better job vetting them. Donna Zucker suggested having a "businessman" as a Chair might be better than a public health professional. Guess not Donna.

From JT's Soapbox: "Many people on-line with Hep C and/or their families have spoken out against Louis Buratti's inappropriate conduct on-line at his Hepatitis C support forums by complaining to the American Liver Foundation, the Massachusetts Hepatitis C Coalition, and the Massachusetts Public Health Administration (sic).

This is the guy that supposedly well-intentioned service providers and public health professionals staged a coup to get appointed Chair only to have the MHCC self-destruct. That is why it is important for advocates living with hepatitis to maintain a cordial but independent relationship with health care professionals and providers. They cannot be trusted to always make the right, or hard, decisions. They failed miserably in appointing Buratti and it will be very difficult for me to be supportive of any effort to re-establish the MHCC without some serious soul searching about where things went wrong and what can be done to insure that qualified grassroots patient advocates have a bigger role in the future. And if the AIDS Action Committee is going to take the lead, they should consider talking with me first. We need fresh leadership that is not marred by the past. The AAC had opportunities to take leadership in HCV advocacy within the MHCC and dropped the ball.

From "Some Things About Hepatitis C" in reference to Lou Buratti: "WARNING.. This man should not be trusted with any personal or medical information."

I don't mean to dishonor a dead man. May Lou rest in peace. But I hope we can all learn from this experience so this kind of mistake never happens again. His appointment undermined HCV patient community confidence in public health institutions and professionals. I expect better and I expect they do too..

Hope you are having a nice summer Dan. Two brief visits to the Cape actually lowered my blood pressure - probably dropped my viral load as well.

Take care.

Peter Fisher,
Ma-HepPEP

Dan Church never responded, but I cc'd the email to MHCC members and got a few interesting responses, including this one from Barry Rund of the Cambridge Health Alliance:

This just proves again what an ass hole you are. mitt's (sic) a shame that you and he couldn't switch places.

Yup. Those are his full, exact words. Found the response interesting enough to file a complaint with Rund's employer, not that I expect anything to come of it, being fancified Cambridge city folks and me living in the hills of  Western Mass and all. Sad to see public health professionals wish bad things on sick people but this disease seems to bring out the worst in some folks. I sent this to Rund in partial response:

Thank you. You and your comment only reinforces my concerns about public health professionals and the dearth of professionalism within the MHCC. I'll pass it on to your employer for their consideration. My time will come soon enough Barry, thank you, especially if you folks don't get it together and develop effective HCV advocacy initiatives. People with hepatitis don't so much die of it as they do from neglect.

So what does all this mean for HCV patients and HCV advocacy in Massachusetts and beyond? For HCV adocates living with HCV - and despite the adversity - it means we have the power and responsibility to stand up for what is right even when the easy way out is to play the game and it seems everyone is against you. I declined solicitous overtures for unrestricted educational funding from Roche in 2003 (though I did cooperate with them in arranging a presentation on pegylated treatment for my support group) because I knew there were unspoken strings attached. That is the way business is done. A few drug industry-funded HCV organizations and patient advocates do enviable work, but you won't hear them calling for more balanced and comprehensive infectious disease programs, or more corporate and political ethics in disease funding, or more accountability by the public health community to disenfranchised HCV patient community advocates. I could sure use some of that pharma money. Start a non-profit, travel the HCV conference circuit, "wine and dine with the best of them" on the drug industry funded gravy train as Lou Buratti boasts in his post. Maybe they could cure me and I could become a poster boy for their snake oil and shake some politicians hands. Damn! Where did I go wrong! If big pharma wont have me, I will accept a plum position at the DPH!!

I'll leave with a little boast of my own, and I think some modest self-congratulation is in order, though, mind you, I am no Lou Buratti. For eight long years I dutifully drove a fair distance and sat through meetings in which the main focus was to quietly work for HCV funding behind the scenes rather than build vocal, community-based support for HCV within the larger context of infectious disease priorities and funding. It was a service provider, pharma-driven agenda, not the consumers. Big on treatment, disturbingly quiet on prevention. There was not a single MHCC mass media event of any significance during that period. We failed to address, among others, the nasty little problem of HCV now being the leading cause of mortality among those HCV/HIV co infected because the infectious disease agenda is controlled by politically powerful and entrenched special interests and they want to keep the focus on HIV. It is politics trumping science pure and simple and Lou Buratti's brief rise and fall is a textbook case of collateral damage.

Lou Buratti aside, there is not an HCV patient advocate in Massachusetts that has had a bigger impact on HCV advocacy, here, or nationally, than I. Didn't rely on the drug industry for funding or support. Kept my independence and moral compass intact. Withstood the criticism and ostracism (and worse) of public health professionals and service providers who are more at ease with complacent, pharma-funded patient advocates. I would be smug were it not for the fact that my efforts have exposed pervasive challenges to advocates living with HCV that will not be easily overcome.

Posted: Mon, Sep 22, 2008 10:49 AM
Updated Sun, Mar 29, 2009 12:00 AM