patient « Berman Institute Bioethics Bulletin

Features

News roundups

Announcements

The Reality Behind Cannabidiol’s Medical Hype

August 28, 2019

The cannabis compound known as CBD is being touted as a treatment for a variety of conditions. But the substance’s uncertain legal status is stalling serious investigation

Quick Read

The Reality Behind Cannabidiol’s Medical Hype

Wednesday, August 28th, 2019

Cannabidiol (CBD) is an illegal drug with no redeeming value. It is also a useful prescription medicine for epilepsy, with considerable potential for treating numerous other conditions. And it is a natural dietary supplement or ‘nutraceutical’ with countless evangelists in the health and wellness community. Although contradictory, all three statements are true from different perspectives, and clinical researchers are frustrated.

“In New York City, you can go to a latte shop and get a CBD product, but if I want to do a clinical trial, I’ve got to get a 2,000-pound safe and go through six months of paperwork and licensing,” says Orrin Devinsky, director of the NYU Langone Comprehensive Epilepsy Center in New York City. Like the cannabis plant from which it is derived, CBD, a type of cannabinoid, is classified by the US Drug Enforcement Administration in the same way as are heroin and lysergic acid diethylamide (LSD) — schedule 1 substances with “high potential for abuse” and “no currently accepted medical use”.

…continue reading ‘The Reality Behind Cannabidiol’s Medical Hype’

Thumb image

Photo by: Mauricio Campino / Airman 1st Class Dedan Dials | VIRIN: 181029-F-DA916-3001.JPG

Be the first to like.

Unlike

Nature

The $6 Million Drug Claim

August 26, 2019

New treatments for rare diseases are changing the lives of patients, but the price can reach millions of dollars for a single person

Quick Read

The $6 Million Drug Claim

Monday, August 26th, 2019

PERRYSBURG, Ohio — Dawn Patterson keeps a multimillion-dollar drug in the fridge, next to a bottle of root beer and a jar of salsa.

The drug, Strensiq, treats a rare bone disease that afflicted her with excruciating pain and left her struggling to work or care for her family.

A year after she began taking the drug, Ms. Patterson, 49, credits it with nearly vanquishing her pain, enabling her to return to workpart time for a hospital.

…continue reading ‘The $6 Million Drug Claim’

Thumb image via article – Maddie McGarvey for the New York Times

Be the first to like.

Unlike

New York Times

‘Maisie’s Army’

August 20, 2019

How a grassroots group is mobilizing to help toddlers access a lifesaving drug

Quick Read

‘Maisie’s Army’

Tuesday, August 20th, 2019

When the family of 20-month-old Maisie Green heard late last month that their insurance company in Grand Junction, Colo., had agreed to cover a new gene therapy for her spinal muscular atrophy, they were elated. They also knew it was no accident.

For two months, the family and a group of more than 700 volunteers, calling themselves “Maisie’s Army,” ran a social media campaign to convince the Greens’ insurer to overturn its decision to deny Maisie access to Zolgensma — the world’s most expensive drug at $2.1 million. The army contacted local news outlets to raise awareness of Maisie’s case. And her mother, Ciji Green, arranged an in-person meeting with Maisie and representatives of the insurance company.

“I want you to look her in the eye and tell her no,” Green recalled thinking about the meeting.

…continue reading ”Maisie’s Army”

Thumb image via STAT COURTESY CIJI GREEN

Be the first to like.

Unlike

STAT

Top US Medical Centers Roll Out DNA Sequencing Clinics for Health (and Often Wealthy) Clients

August 16, 2019

Seizing on the surging popularity of at-home DNA testing kits, top academic medical institutions are opening clinics that promise to probe much deeper into your DNA — if you’re willing to pay hundreds or even thousands of dollars out of pocket to learn about disease risks that may be lurking in your genes

Quick Read

Top US Medical Centers Roll Out DNA Sequencing Clinics for Health (and Often Wealthy) Clients

Friday, August 16th, 2019

Genomic sequencing programs that cater to apparently healthy adults have been started in the past few years at the Mayo Clinic; the University of California, San Francisco; and the HudsonAlpha Institute for Biotechnology, a nonprofit research institution in Alabama. Now, two top Boston hospitals are getting into the potentially lucrative business.

Brigham and Women’s Hospital on Friday unveiled a new Preventive Genomics Clinic that will offer a menu of options for a genetic workup, with price tags ranging from $250 to $2,950, depending on how many genes are analyzed; it’s the first program of its kind that will offer the sequencing to children in addition to adults. And next month, Massachusetts General Hospital plans to launch its own clinic for adults that will offer elective sequencing at a similar price range as the Brigham.

…continue reading ‘Top US Medical Centers Roll Out DNA Sequencing Clinics for Health (and Often Wealthy) Clients’

Thumb image via article, Dom Smith/STAT

Be the first to like.

Unlike

STAT

Moral Distress in Neurosurgery

August 15, 2019

Is it in the patient’s best interest to go through surgery if the chance of meaningful recovery is vanishingly small?

Quick Read

Moral Distress in Neurosurgery

Thursday, August 15th, 2019

By Joseph D. Stern, MD

My patient had arrived from another hospital in the middle of the night. He was a wiry older man, restless but alert. He had a blood clot compressing the dominant hemisphere of his brain. He did not speak or move the right side of his body but fidgeted with his left hand and leg: pulling at his IV; removing his oxygen tubing and the ECG contacts pasted to his chest.

He did not seem to understand what was happening and could neither assent to nor refuse the surgery I was recommending. Yet just hours earlier, he had been his normal self.

His wife, whom I later learned was developing dementia, accompanied him in the ambulance. She was frail, thin and appeared disheveled and confused. She knew little about his medications and medical problems and didn’t know if he was on blood thinners. Still, given his rapid decline over a few hours, I took him to surgery. The craniotomy went well and he seemed to recover smoothly.

…continue reading ‘Moral Distress in Neurosurgery’

Thumb image via article/ Kim Ryu

Be the first to like.

Unlike

New York Times

Lyme Disease Is Baffling, Even to Experts

August 14, 2019

But new insights are at last accumulating

Quick Read

Lyme Disease Is Baffling, Even to Experts

Wednesday, August 14th, 2019

In the fall of 1997, after I graduated from college, I began experiencing what I called “electric shocks”—tiny stabbing sensations that flickered over my legs and arms every morning. They were so extreme that as I walked to work from my East Village basement apartment, I often had to stop on Ninth Street and rub my legs against a parking meter, or else my muscles would begin twitching and spasming. My doctor couldn’t figure out what was wrong—dry skin, he proposed—and eventually the shocks went away. A year later, they returned for a few months, only to go away again just when I couldn’t bear it anymore.

Over the years, the shocks and other strange symptoms—vertigo, fatigue, joint pain, memory problems, tremors—came and went. In 2002, I began waking up every night drenched in sweat, with hives covering my legs. A doctor I consulted thought, based on a test result, that I might have lupus, but I had few other markers of the autoimmune disease. In 2008, when I was 32, doctors identified arthritis in my hips and neck, for which I had surgery and physical therapy. I was also bizarrely exhausted. Nothing was really wrong, the doctors I visited told me; my tests looked fine.

…continue reading ‘Lyme Disease Is Baffling, Even to Experts’

Thumb image via Flickr Some rights reserved by National Institutes of Health (NIH)

Be the first to like.

Unlike

The Atlantic

Should Patients Get a Say in Deciding Whether a Drug Is Cost Effective?

August 2, 2019

A watchdog group sets aside emotions to assess drugs’ value. Patients say their lives are more than a number

Quick Read

Should Patients Get a Say in Deciding Whether a Drug Is Cost Effective?

Friday, August 2nd, 2019

Health economists walk a precarious tightrope: Their analyses are quantitative and, presumably, emotion-free. But health care is intensely personal — and often, intensely emotional.

That tension between between quantitative analyses and lived experiences was on full display at a recent meeting of the Institute for Clinical and Economic Review, a nonprofit that tasks itself with determining what a drug is worth based on factors like how well it works and how much it helps patients.

ICER had set out to review evidence for three drugs that treat — but do not cure — Duchenne muscular dystrophy, a rare and fatal disease that causes affected people’s muscles to deteriorate over time. For them, the question is a basic — and, yes, quantifiable — one: Do the drugs improve the lives for these patients enough to justify the price tags, which can cost hundreds of thousands of dollars each year?

…continue reading ‘Should Patients Get a Say in Deciding Whether a Drug Is Cost Effective?’

Thumb image via STAT – Hadley Green for STAT

Be the first to like.

Unlike

STAT

If You Don’t Have a Therapist, Can Instagram Help?

August 1, 2019

Therapists are now using the platform as a way to offer support to their followers – just don’t call it ‘therapy’

Quick Read

If You Don’t Have a Therapist, Can Instagram Help?

Thursday, August 1st, 2019

In 2017, California therapist Lisa Olivera made her first post to her Instagram account. “I am here to share bits of wisdom, tools for well-being, and reflection on topics related to self-worth, vulnerability, shame/guilt …” she wrote beneath a selfie.

Today, her feed is followed by over 215,000 people, and represents just one of a growing subset of Instagram accounts run by licensed therapists and used to share mental health self-care tips and food for thought.

Last month, this group was shaken when American media coverage of the movement referred to it as “Insta-therapy”, with one outlet extrapolating that in the future, therapy could mean “scrolling through Instagram rather than sitting in an office”.

…continue reading ‘If You Don’t Have a Therapist, Can Instagram Help?’

Be the first to like.

Unlike

The Guardian

Page 2 of 28«123 4 5...10 20...»Last »

The Reality Behind Cannabidiol’s Medical Hype

The Reality Behind Cannabidiol’s Medical Hype

The $6 Million Drug Claim

The $6 Million Drug Claim

‘Maisie’s Army’

‘Maisie’s Army’

Top US Medical Centers Roll Out DNA Sequencing Clinics for Health (and Often Wealthy) Clients

Top US Medical Centers Roll Out DNA Sequencing Clinics for Health (and Often Wealthy) Clients

Moral Distress in Neurosurgery

Moral Distress in Neurosurgery

Lyme Disease Is Baffling, Even to Experts

Lyme Disease Is Baffling, Even to Experts

Should Patients Get a Say in Deciding Whether a Drug Is Cost Effective?

Should Patients Get a Say in Deciding Whether a Drug Is Cost Effective?

If You Don’t Have a Therapist, Can Instagram Help?

Follow Us

Twitter Feed

Twitter Feed