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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

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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

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New York Times

In Men, It’s Parkinson’s. In Women, It’s Hysteria.

August 23, 2019

Neurologist Laura Boylan suffered from tremors and loss of balance that she attributed to a cyst in her brain. Why didn’t her doctors believe her?

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In Men, It’s Parkinson’s. In Women, It’s Hysteria.

Friday, August 23rd, 2019

Once it was called “hysterical” movement disorder, or simply “hysteria.” Later it was labeled “psychogenic.” Now it’s a “functional disorder.”

By any name, it’s one of the most puzzling afflictions — and problematic diagnoses — in medicine. It often has the same symptoms, like uncontrollable shaking and difficulty walking, that characterize brain diseases like Parkinson’s. But the condition is caused by stress or trauma and often treated by psychotherapy. And, in a disparity that is drawing increased scrutiny, most of those deemed to suffer from it — as high as 80% in some studies — are women.

Whether someone has Parkinson’s or a functional disorder can be difficult to determine. But the two labels result not only in different treatments but in different perceptions of the patient. A diagnosis of Parkinson’s is likely to create sympathy, but a functional diagnosis can stigmatize patients and cast doubt on the legitimacy of their illness. Four in 10 patients do not get better or are actually worse off after receiving such a diagnosis and find themselves in a “therapeutic wasteland,” according to a 2017 review of the literature by academic experts.

…continue reading ‘In Men, It’s Parkinson’s. In Women, It’s Hysteria.’

Thumb image via article – Sangsuk Sylvia Kang, Special to ProPublica

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Propublica

What If Aging Weren’t Inevitable?

August 19, 2019

But a curable disease? If this controversial idea gains acceptance, it could radically change the way we treat getting old

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What If Aging Weren’t Inevitable?

Monday, August 19th, 2019

…continue reading ‘What If Aging Weren’t Inevitable?’

Thumb image via article – Stuart Bradford

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MIT Technology Review

Sickle Cell Patient Reveals Why She Is Volunteering For Landmark Gene-Editing Study

July 29, 2019

Victoria Gray is waiting patiently in a hospital room at the Sarah Cannon Research Institute in Nashville

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Sickle Cell Patient Reveals Why She Is Volunteering For Landmark Gene-Editing Study

Monday, July 29th, 2019

“It’s a good time to get healed,” she says. The 34-year-old from Forest, Miss., has struggled with sickle cell disease throughout her life.

Gray is at the hospital because she volunteered for one of the most anticipated medical experiments in decades: the first attempt to use the gene-editing technique CRISPR to treat a genetic disorder in the U.S.

She’s the first patient ever to be publicly identified as being involved in such a study.

…continue reading ‘Sickle Cell Patient Reveals Why She Is Volunteering For Landmark Gene-Editing Study’

Thumb image via NPR Meredith Rizzo/NPR

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NPR

Is Sexual Desire a Medical Issue?

June 20, 2019

An experimental drug for women revives an intense debate. In the coming days, the Food and Drug Administration will decide whether to approve an injection meant to increase women’s drive for sex. Its demonstrated effects are modest, but some doctors say the drug would meet a real need for thousands of women

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Is Sexual Desire a Medical Issue?

Thursday, June 20th, 2019

Cancer therapies should shrink tumors. Diabetes treatments ought to lower blood sugar. But what should society expect from drugs for sexual desire?

In the coming days, the Food and Drug Administration will decide whether to approve an injection meant to increase women’s drive for sex. Its demonstrated effects are modest, but some doctors say the drug would meet a real need for thousands of women. Others, however, argue it is simply pharmaceutical overreach, another effort that reduces the complexity of human sexuality to a set of measurable dots on a chart.

“It’s a mismatch of models,” said Leonore Tiefer, a sex therapist who previously ran the sex and gender clinic at New York’s Montefiore Medical Center. “They want the car repair model: ‘Hello, doctor, I’ve got this carburetor that doesn’t work in my car. Could you fix it for me without talking to me?’ It’s laughable.”

…continue reading ‘Is Sexual Desire a Medical Issue?’

Image: By Vaccinationist – PubChem, Public Domain, https://commons.wikimedia.org/w/index.php?curid=53052077

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STAT

Move Over, Martin Shkreli

June 13, 2019

This Pharma Exec Is Accused Of Fixing Prices On 107 Drugs

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Move Over, Martin Shkreli

Thursday, June 13th, 2019

In some ways, it was the corporate world equivalent of the infamous baptism scene in Francis Ford Coppola’s The Godfather, when, in a single 24 hours, the newly anointed don of the Corleone family executed a plan to simultaneously eliminate rivals in La Cosa Nostra.

In this case, however, the family was made up of generic-drug makers Teva Pharmaceuticals, Mylan, Actavis, Lupin, Novartis’ Sandoz, Taro Pharmaceuticals and others. On a single day, Friday, April 2014, the scheme hiked the price on 22 generic drugs—ranging from cephalexin, a bacterial infection antibiotic, which jumped 185%, to ketoconazole cream, used to combat athletes foot and jock itch, which jumped 110%, to diflunisal, an anti-inflammatory, up as much as 182%.

In annals of marketing, their concerted action was impressive. The move rubbed out price competition and profit erosion in an industry plagued by them—and created a windfall for those in on the game.

…continue reading ‘Move Over, Martin Shkreli’

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Forbes

Preparing My Family for Life Without Me

June 7, 2019

After eight heart attacks, a young wife and mother with an uncommon condition curates her legacy while decorating a new home

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Preparing My Family for Life Without Me

Friday, June 7th, 2019

Putting up pictures in our new house last fall, I opted for nails, not tape. My family had just relocated from California to Brooklyn, our fourth move in five years. With so much change, it had been hard to feel settled, but it was my job to try.

I wanted to create a sense of stability while my children, then 8 and 11, were still innocent enough to believe that life could be stable. I wanted to create a sense of hope while my husband, Jonathan, was still young enough to start over.

Although I was only 45, my precarious health had taught me to use time wisely. On the agenda that day was to get settled in our new home, a wide brownstone with big windows, just like I had always wanted. With light reflecting against high ivory walls, the house had a familiar feeling of peace. As Jonathan tended to the unpacking, I charged myself with decorating, a job that sounded frivolous, but I knew better.

…continue reading ‘Preparing My Family for Life Without Me’

Image via NYT Brian Rea

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New York Times

Mentally Ill and Languishing in Jail

June 6, 2019

A Pennsylvania case illustrates a national problem: People with psychiatric illnesses often remain incarcerated while they wait for a hospital bed

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Mentally Ill and Languishing in Jail

Thursday, June 6th, 2019

Anne Marcelline thought her daughter’s schizophrenia was under control. Elle, 34, had her own apartment in New York City, a steady job in a law office and was studying for the Law School Admission Test. She seemed stable—so stable that to clear her mind for the test, she stopped taking her medication.

It wasn’t long before she had a psychotic break and ran away, something that had happened at least once before, when she ended up in Georgia, in homeless shelters and a county jail. This time, she turned up in Bucks County, Pennsylvania, nearly 100 miles from her home. Elle was arrested while walking down the street, suspected of stealing cash from the register of a gas station.

…continue reading ‘Mentally Ill and Languishing in Jail’

Thumb image: MARCUS MARRITT FOR THE MARSHALL PROJECT

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Marshall Report

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The $6 Million Drug Claim

The $6 Million Drug Claim

In Men, It’s Parkinson’s. In Women, It’s Hysteria.

In Men, It’s Parkinson’s. In Women, It’s Hysteria.

What If Aging Weren’t Inevitable?

What If Aging Weren’t Inevitable?

Sickle Cell Patient Reveals Why She Is Volunteering For Landmark Gene-Editing Study

Sickle Cell Patient Reveals Why She Is Volunteering For Landmark Gene-Editing Study

Is Sexual Desire a Medical Issue?

Is Sexual Desire a Medical Issue?

Move Over, Martin Shkreli

Move Over, Martin Shkreli

Preparing My Family for Life Without Me

Preparing My Family for Life Without Me

Mentally Ill and Languishing in Jail

Mentally Ill and Languishing in Jail

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