logo

Mom outraged as her son's essential treatment is going from free to $375,000 a year

Rebelander Basilan
Feb 11, 2019
09:51 P.M.
Share this pen
FacebookFacebookTwitterTwitterLinkedInLinkedInEmailEmail

A mother from Kansas City has questioned a pharmaceutical company over why a drug that was supposed to be free is now sold at a very high price.

Advertisement

Ann Schuller, whose son has Lambert-Eaton Myasthenic Syndrome (LEMS), is wondering why Firdapse, a drug that cures LEMS, now costs $375,000 a year, as reported by NBC News.

Firdapse, tablets for the treatment of Lambert-Eaton myasthenic syndrome (LEMS) in adults. | Photo: YouTube/Dave White

Firdapse, tablets for the treatment of Lambert-Eaton myasthenic syndrome (LEMS) in adults. | Photo: YouTube/Dave White

Advertisement

The price is way too expensive for her.

“Why is my insurance company having to pay that much money for something that doesn’t cost that much to make? Is that really the kind of system we want to have?” she said.

Advertisement

A "MIRACLE DRUG"

Schuller's son, Will, was diagnosed with LEMS at 18, which made him unable to run a distance and even struggled to walk going to his class from the school’s parking lot.

It was the 3,4-diaminopyridine or “3,4-DAP” that saved her son’s life. Just 40 minutes after Will took the medicine at Mayo Clinic in Minnesota, he was back to his normal state and could do physical activities like running.

Advertisement

“I don’t believe in miracles but that was pretty darn close to one. It was a miracle drug for sure,” she said.

Will is now a senior at the University of Tulsa where he is studying mechanical engineering.

LEMS is a chronic autoimmune disorder that affects muscle fatigue ability, affecting about 3,000 people in the U.S., according to Dr. Ted M.Burns, a professor of neurology at the University of Virginia.

Advertisement

"COMPASSIONATE USE"

The 3,4-DAP has been produced since 1992 by Jacobus Pharmaceuticals, a small company based in New Jersey.

This was recently made available for free for patients with LEMS through “compassionate use”, program led by the Food and Drug Administration (FDA).

Advertisement

The doctors at Mayo Clinic, however, warned Will’s parents about a price increase for the drug, after the exclusive rights of the drug were bought by Catalyst.

Curious about the issue, Senator Bernie Sanders has sent a letter to Catalyst, asking an explanation for the questionable new price of Firdapse.

The Catalyst, however, defended that the price is legal and reasonable.

Catalyst CEO Partick J. McEnany previously said that the pricing strategy was centered on the broad and sustainable coverage from both public and private payers and assistance for patients in need.

There have been several stories of miraculous recovery. One such story is a baby whose brain tumor reportedly disappeared after a "miracle kiss" from Pope Francis.

Advertisement
info
Please fill in your e-mail so we can share with you our top stories!
By subscribing, you agree to our Privacy Policy
Advertisement
Related posts

Company Loses $8 Million under Director’s Order, He Blames the Clerk Later

April 18, 2022

Woman Follows Little Girl Who Begs Strangers to Buy Her Last Pair of Boots near the Church — Story of the Day

January 31, 2022

Girl Disappears Day after Grandmother Gifts Her an Extremely Expensive Necklace – Story of the Day

January 31, 2022

Taxi Driver Returns Lost Wallet with $1600, Receives Amount 100 Times More Months Later – Story of the Day

February 01, 2022

Sharon Osbourne's 1st Daughter Left Home at 16 & Her Sister Faced 'Dark Path' after Family's Reality Show

March 16, 2022

Widow’s Son Spends All Her Savings Thoughtlessly, Later Learns She Needs Expensive Operation – Story of the Day

April 27, 2022

Boy Hands Poor Widowed Mom a Box and Says, “Dad Told Me You Should Open This If We Need Help" – Story of the Day

March 23, 2022

'Family Affair's' Johnny Whitaker's Family Threatened to 'Divorce' Him after He Became Penniless

January 25, 2022

Ashley Judd Defended Herself from Public Criticism of Her Face amid Her Battle with Chronic 'Siege Migraines'

May 16, 2022

Widowed Mom Learns Her Son Escapes Home Every Night, He Returns One Day with Bag Full of Cash – Story of the Day

April 11, 2022

Woman Flees Her Burning Home in a Rush, Months Later Returns and Sees Luxury House in Its Place – Story of the Day

February 11, 2022

Woman Notices That Her Grandson Disappears in the Evenings and Decides to Follow Him – Story of the Day

January 29, 2022

Man Waits for Son He Has Not Seen in Years at the Airport, Does Not Find Boy among Passengers – Story of the Day

April 29, 2022

Wife Buys Easter Egg at Flea Market with Last $50, Husband Scolds Her until He Accidentally Opens It — Story of the Day

April 13, 2022