In Boston, docs to use direct action to #protest the #price of #insulin

Activist docs argue that people are dying for lack of access to insulin. Tomorrow — Friday — the Right Care Alliance will take that complaint to the Sanofi offices in Cambridge.

More here from STAT, including a company statement noting that it provides free IMG_6677medications for some low-income, uninsured patients and will  “continue to explore innovative ways to find long-term solutions to help eliminate or significantly reduce the out-of-pocket expenses for patients.”

Here’s what the Right Care Alliance will do Friday:

 The mothers of two young adults with diabetes who died while rationing insulin last year will deliver the ashes of their children to Cambridge pharma corporation Sanofi. The mothers will be joined by activists from at least five local groups that are demanding a reduction in insulin prices so that no more people die.

Here’s what Dr. Saini has to say about the campaign:

More news about the price of insulin:

Minnesota Attorney General Lori Swanson today filed a lawsuit against the nation’s three major manufacturers of insulin used to treat diabetes after prices more than doubled in recent years.

Press release: Sanofi has expanded its access program for people living with diabetes to include all Sanofi insulins*, helping patients get the insulin they need at a significantly reduced price.

 

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Is the US setting the bar too low for new CF drug? Canada says it’s not worth it

From The Globe and Mail:

Canadian governments should not pay for a $250,000-a-year cystic fibrosis medication because it is not clear the drug actually improves patients’ health, according to a fresh review that has devastated some with the potentially fatal lung disease….

Screen Shot 2018-10-15 at 9.06.47 AMIn a report released on Thursday, the CADTH’s expert panel said its review of the Orkambi clinical trials and other studies found the drug produced only slight improvements for about one in four patients.

The report also said Orkambi’s Boston-based maker, Vertex Pharmaceuticals, would have to slash the drug’s price by more than 98 per cent to satisfy the agency’s value-for-money analysis.

“[Orkambi] is better than nothing. It’s better than placebo,” said Trevor Richter, director of the CADTH’s Common Drug Review, which oversees the review process for non-cancer medications. “But the benefit is really small. Not only is it small, but there’s a huge amount of uncertainty about what the actual size of that benefit is.”…

Vertex called the agency’s recommendation “deeply disappointing.”

Patients, who say the drug benefited them, are suing.

Mr. Richter of the CADTH said it is difficult but necessary sometimes to disappoint patients.

“We don’t enjoy delivering recommendations that are seen as negative,” he said. “In the end, we are an evidence-based review process. It’s rigorous and it’s transparent.”

Alzheimer’s drug promising? Page 1. Alzheimer’s drug not so promising? Page B12

Not sure how STAT played this on their site. In the the print version of The Boston Globe, it ran it on A1 Thursday

Hopes rise again for a drug to slow Alzheimer’s disease

File Oct 30, 9 54 16 AM

The follow-up in today’s print edition ran on B12, with this headline: Interpreting an Alzheimer’s trial.

Have yet to find in on the Globe web site, but here’s the STAT version, with their headline.

Here’s why Biogen lost $7 billion overnight despite ‘positive’ Alzheimer’s data

 

Should #STAT take ads from drug industry lobbyists at #PhRMa?

While acknowledging the quality of the reporting at STAT — and the search for new revenue  to support good journalism — Health News Review wonders why The Boston Globe life science spin-off has to take ads from the pharmaceutical industry’s top lobbying group.

Some STAT readers might see PhaRMa as a champion of just another health-related indstat-phrma-sponsorshipustry, like medical software or consulting services.  Others question the industry’s research, pricing and marketing practices as evidence of a commitment to profits over healing and access.

So, HNR argues that the ads allow the “industry to buy juxtaposition to messages that often call their practices into question.”  

Worth noting that my STAT newsletter arrives with different sponsors on different days. Last week’s included J&J, Amgen, a life science software maker, or none at all.

From HNR:

I am sure that STAT allows no editorial influence by this or any other sponsor. Their hard-nosed coverage of pharmaceutical industry news is top notch…

 

But I do not praise their front office decision to accept this sponsorship deal. It startles me and bothers me every time I see that PhRMA logo on the STAT newsletter. And I think it could raise legitimate questions in discerning readers’ minds.  Journalism ethics dictates that one should strive at all costs to avoid even the appearance of a conflict of interest. Was it necessary for STAT to enter into this sponsorship deal?  STAT just introduced a premium subscription plan.  I hope that works for them; maybe it will generate enough income so that they wouldn’t feel compelled to swim in the murky waters of the PhRMA sponsorship deal…

Certainly PhRMA is thrilled with STAT saying “Yes” –  allowing them to buy their way into regular appearances in the STAT newsletter. This is a foot in the door for an industry to buy juxtaposition to messages that often call their practices into question. It would be understandable if any reader’s head was spinning with thoughts of “What’s going on here?”

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

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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.

 

Boston news from #BIO2015: Will old labs make good housing? Do expensive drugs reduce health costs?

Over here in Kendall Square, pharma has invested a lot of money in buildings that look like they were designed by Ikea. If this bubble is about to burst, as suggested below, the city could use some nice low-rise housing. photo2 (1)

This story also includes the argument that pricey drugs save the system money by, for example, curing HepC patients and keeping them out of the hospital. Will the push by insurers to pay for effectiveness put some numbers to that claim?

More From Robert Weisman.

PHILADELPHIA — The funding model for drug development is under severe strain as venture capitalists shift money to safer investments, the US government bankrolls less basic research, and a backlash builds against high-priced medicines, a panel of biotechnology industry leaders warned Monday.

Joshua Boger, founder and former chief executive of Vertex Pharmaceuticals Inc. in Boston, said drug companies should be enjoying a reputation for helping the health care system to save money by keeping patients healthy and out of the hospital.

“We’re the cost-lowering part of the medical world, and instead we’ve taken on the role of the whipping boys on cost. And it’s just not true.” Boger said.

Health insurers and lawmakers have complained about the high cost of new specialty medicines such as the hepatitis C drug Sovaldi, which can cost $1,000 per pill. Vertex itself charges more than $300,000 per patient each year for a drug that treats some cystic fibrosis patients

Kendall Square: Worker’s Paradise!

 

Or East Cambridge as The People’s Republic of Pharma

A mural outside the Biogen Idec construction site.

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