Tonight! Meet the #STATnews team at The Burren pub in Somerville #science

Science in the News was started by Harvard students who wanted to help explain complex issues to the public. The group has expanded beyond that to events like:

Tonight! Science by the Pint with The STAT Team

The (sometimes messy) science of communicating sciencesbtp_spring2017_1pg

Monday, January 9, 6:30-8:30pm at The Burren (247 Elm Street, Somerville) (directions)

Are you interested in learning more about what the field of science journalism looks like from the inside? Panelists from the Boston-based publication STAT will discuss what led them to a career in health and science journalism, as well as the challenges and value of investigating and reporting in this field. Small group discussions will follow the panel, so you’ll have a chance to ask questions and bring up topics you want to discuss. Members of the panel will represent a broad range of careers within science journalism, including reporting, editing, social media, marketing, multimedia, and graphic design.

About STAT (from statnews.com): STAT is a new national publication focused on finding and telling compelling stories about health, medicine, and scientific discovery. We produce daily news, investigative articles, and narrative projects in addition to multimedia features. We tell our stories from the places that matter to our readers – research labs, hospitals, executive suites, and political campaigns.

 

Health Leaders: #Lacks family members now have a say in #Henrietta’s immortal scientific legacy

My report from Health Leaders on a recent talk by members of Henrietta Lacks’ famfile_000-4ily.

The ongoing story of the late Henrietta Lacks, the African-American
woman who unwittingly provided cells for years of medical research, has much to offer those battling disparities
in healthcare, according to family members who spoke in Boston last week.

That message, delivered at a panel discussion, came from Lacks’ grandson David Lacks, Jr. and her great granddaughter Victoria Baptiste, RN, as well as Joseph Betancourt, MD, director of the Disparities Solutions Center at Massachusetts General Hospital.

Two Boston meetings look at the role of patient advocates. They offer two very different perspectives.

patient-advocacy-summit-e4fb

Pharmaceutical manufacturers often  look to patient advocates for help winning approval for new drugs. Their most recent success in this area was the FDA’s approval of a new drug for Duchenne muscular dystrophy. That decision came despite recommendations against approval from FDA staff.

In an editorial, the Boston Globe questioned the FDA’s move while noting that eteplirsen’s “entry into the marketplace represents a major victory for the patient advocacy movement, and is bound to encourage more such engagement in the drug-approval process. Based on the infighting that went on over the Duchenne treatment, that’s going to be challenging for the FDA. It has to find a balance between public opinion and what’s truly in the public interest.” (The Globe also featured a story this week about one of those patient advocates.)

Today, drug makers in Boston are hosting a conference for patient advocates. The “Patient Advocacy Summit 2016 – Sharing Our Stories: Building a Patient-Centered Ecosystem” is underway at Novartis facility near MIT.

This event brings industry leaders together with patient advocates and other stakeholders to examine ways in which life sciences companies can more fully incorporate the patient voice into the work they do— not just approaching regulatory applications or at commercialization, but throughout the drug development cycle.

The day-long event will include panel discussions, case study presentations (spotlighting industry/patient partnerships), a keynote address, and awards ceremony, as well as a networking breakfast, lunch and cocktail reception. Expected attendance is 180 patient advocacy professionals, patient organizations and other stakeholders.

Worth noting that the same topic was the subject of  yesterday’s  panel at HUBweek, a  science/tech/arts series ongoing in Boston. The title: “The FDA and the Drug Approval Process: Is it Really Broken?”  Some made the point —  we should listen to the parents of sick children.  Others offered a different perspective: Patients might be better off in clinical trials with informed consent and free drugs,  rather paying  $300,000 per year for that same, unproven medication with unknown side effects.

Contacted after the panel, Zuckerman, president of the National Center for Health Research in DC,  offered these thoughts:

  1. Patient perspectives are crucial in helping us understand what scientific data mean, what the benefits and risks both mean to patients.  So patients should be part of the process – what should the outcome measures be and how can they be measured?
  2. The FDA is listening to patients who desperately want treatments but they are not listening well to patients who are harmed by ineffective or unsafe treatments.  That’s partly because the former are funded by Pharma to attend FDA meetings and to lobby Congress, but the latter are on their own, often don’t have the money to attend FDA public meetings, and wouldn’t even know about them if they don’t read the Federal Register, which is the only place they are announced in advance.

 A few more tweets worth noting.

 

Would you take a pill to prevent AIDS? Those at risk should consider it, says Massachusetts.

The Globe reports today on the push to make Capturean AIDS prevention drug available. After
many years of struggling to come up with a vaccine, this was a true breakthrough. (We don’t use that word lightly on this page.) But instead of a shot that stays with you for year, here you have to take a pill.

Critics questioned the wisdom of giving powerful drugs to healthy people, and worried that access to a preventive drug would encourage promiscuity or lead to a spike in other sexually transmitted diseases by reducing condom use.

But as study after study — some conducted in Boston — found the drug safe and effective, public health officials came to embrace PrEP, concluding the benefits exceed the hazards. The US Centers for Disease Control and Prevention estimates that some 1.2 million people at risk of HIV infection should at least consider PrEP.

 

 

 

 

 

The New Yorker:#Boston researchers are hunting for a #Zika vaccine — trco201

The August 22 edition of The New Yorker includes a story by Siddhartha Mukhergee on Dan Barouch, director, Center for Virology and Vaccine Research at BIDMC. He’s on the hunt for a Zika vaccine and his work on HIV is informing the effort. From the article, which is not behind the NYer pay wall:

Capture

 

Should the FDA approve Vertex’s new cystic fibrosis drug?

The scene at the FDA hearing was familiar. All the  advisory committees have seen it play out again and again. Yesterday, it was the Pulmonary-Allergy Drug committee: The pharma doc with the convincing statement. The weeping patients. The drug likely to cost a couple thousand a month offering a slim  benefit over an existing drugs. But it works, and it’s safe.

From the Globe:VertexLogoSOP

“I think this is a much-needed advance for patients with cystic fibrosis,” said committee member Dr. Michelle S. Harkins, associate professor of medicine at the University of New Mexico Albuquerque, one of the majority voting to recommend approval.

The lone dissenter in the 12-1 vote recommending approval of the drug, Dr. Yanling Yu, the president and cofounder of Washington Advocates for Patient Safety in Seattle, said she was not convinced the data generated by the Vertex testing supported the approval of Orkambi.

“I really understand the patients critically need a new drug, but sometimes a new drug does not provide [the needed effectiveness],” she said.

From The New York Times story:

An issue for the advisory committee was that Orkambi had what the F.D.A. said was only modest effectiveness, improving lung function by only about 3 percentage points relative to placebo.

Some family members or advocates, some of them crying, pleaded with the committee to endorse the drug.

Some patients who took the drug in clinical trials said it had made a huge difference in their lives, reducing their coughing, allowing them to exercise better, helping them gain weight or reducing how often they ended up in the hospital…

Michael Yee of RBC Capital Markets, for instance, expects the price will be $225,000 to $250,000 a year.

The vote is advisory. The FDA staff will make the final call.

More here:

The financial stakes for Vertex.

FDA briefing for meeting.

Vertex briefing for the meeting

@CommonHealth: Wikipedia and “energy” therapist clash over definition of “respectable scientific journals”

ss We link to a CommonHealth guest post by a Spaulding Rehab doc Eric Leskowitz. He promotes new age approach to pain known as “energy medicine “ and says he’s  been dismissed by Wikipedia as a “quack” despite his peer-reviewed work and Harvard cred

Hard to disagree with the first part of Wikipedia’s response to a petition supporting Leskowitz…

 If you can get your work published in respectable scientific journals – that is to say, if you can produce evidence through replicable scientific experiments, then Wikipedia will cover it appropriately..

.…except to say: What’s defines a “respectable”  journal.  True, not all peer review is equal, but who makes that call?

Wikipedia errs on the safe side and sets a high evidence bar. Still, Wikipedia’s ‘s citation of  Quackwatch — a virulently  anti-alt medicine web site — seems shaky. That site casts its net widely, ragging on everything from faith healers to acupuncture and massage therapy.

And the rest of Wikipedia’s response seemed kind of harsh…

What we won’t do is pretend that the work of lunatic charlatans is the equivalent of “true scientific discourse”. It isn’t.

At the same time, Leskowitz doesn’t do himself any favors by citing Dr. Mehmet Oz’s endorsement.  Dr. Oz has been known to promote less than substantiated therapies.

Energy Psychology has even gotten some fairly mainstream attention, from television’s Dr. Oz to The Huffington Post.

 

 

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