Fear seizes her: what would it mean for her independence? Would she become a financial burden for her family? How is it possible in the country that gave him so much?
The disease first attacked her hip and abdominal muscles, then her back muscles, she said. Just wanting to get up to walk was a torture. She dragged herself in the rooms and on the stairs to move to her home. For two years, she wore three back straps one over the other to allow her to stand up.
The disease even attacked his tongue, making it difficult to eat. She lost a lot of weight and her muscles atrophied. All aspects of his life have been affected.
When she was introduced to drugs, her doctor told her that it would make her feel more alert and allow her to return to basic functions. Her eyes widened when she took the pills for the first time. "I said," Wow, you're right about it, "" recalls Patel. "You feel like you want to live and have a life.
"Without this medicine, you can not even move, it's as if your body was totally like a sweet potato."
So imagine the difficult situation in which a price increase soaring puts a patient like her, she said.
Afraid of overburdening her family with exorbitant bills, she started rationing her medications by taking two tablets a day instead of four. She said that she was trying to stretch her reserves by three months as long as possible.
"To be honest, I can not believe this to happen," she says.
His son, Krishan Patel, said his mother had been rejected by Medicare for drug coverage, causing concern, the family could be stuck with a massive bill. He said that she is calling for coverage on an exceptional basis. His mother also applied to the Assistance Fund, a non-profit organization that helps pay for co-payment of patients. He said that she has not heard back yet.
Between him and his sister, Krishan Patel said that they would do everything possible to help their mother. He has already started writing and calling lawmakers, AARP, the drug maker and whoever would listen.
He said that he was not talking only for his mother, but for the less fortunate. "If we do not shed light on these things," he says, "so what the hell are we doing?"
"My mother's livelihood is fundamentally in the hands of a small group that can do whatever it wants," he said. "You are exploiting human suffering to make money – and that's a heartbreaking idea."
Bernie Sanders asks for action
Sen. Bernie Sanders, who earlier this month had requested Catalyst Pharmaceuticals' $ 375,000 price response, criticized the company for failing to respond, and ripped Catalyst into jeopardizing life of patients.
"Instead of answering my questions or lowering the price of this drug, they hired a lobbying company," Sanders told CNN in a written statement Wednesday. "It is now clear that some patients are rationing their offer of Firdapse because they can not afford to bear the exorbitant cost of the drug they previously received at no cost."
"If Catalyst does not immediately lower the price of the drug, I will ask the FDA to authorize the pharmacies and manufacturers that manufactured this drug to resume authorization to provide it, so that all patients can get the drugs they need. "
CNN has contacted the US Food and Drug Administration for comments.
Assuming her mother is approved for the drug, Krishan Patel said Firdapse was one of her mother's Medicare Level 4 drugs with 40% co-insurance. Even after the rebates, he said, the family fears the possibility of spending more than $ 100,000 a year on drugs.
Catalyst ensures that patients will have little or no cost to pay, despite the fears of the LEMS community. CNN interviewed Catalyst about the possibility that patients remain stranded with a tab of $ 100,000, as the Patel family has expressed.
"All Medicare patients are referred to foundations that support the LEMS community, and these foundations reduce user fees for all patients to $ 0," Catalyst spokesperson David Schull said in an email. "No fees for Medicare patients with this configuration."
"Your facts are wrong."
When asked about how Catalyst informs patients about the co-payment program, Schull replied, "Everyone is well informed, we do not have any additional information, so I suggest you look for what will be when the company provides its annual financial report. and update the company in March. "
Krishan Patel said that patients like her mother did not have until March to wait when they needed answers now. He criticized what he called the "inconceivable behavior of Catalyst to create anxiety in some of the most vulnerable patients with this disease."
"It sounds like the most insane statement I've ever heard," he said about Catalyst's answer. "By the end of the day, it's like:" Really? "
The Patels are not the only ones who are worried about it.
Dr. S. Vincent Rajkumar, an oncologist hematologist at the Mayo Clinic, said that he was giving a talk to Mayo's doctors about the rising costs of prescription drugs and the possible solutions. Unbeknownst to Rajkumar, one of the doctors brought a patient with LEMS. The patient told her that she was receiving free Jacobus medication since 2004 and that she had just been told that she should pay $ 3,800 a month in copayment.
This patient was Lore Wilkinson. She was outraged by the rising prices, so she decided not to take the drug – even if it meant a rapid decline in her health. She has already started looking for a wheelchair "because my quality of life will deteriorate".
"I'm going to get by.I'm not going to be a party to enrich the pockets of this predatory drug product." Inabusable! " she told CNN. "I do not think it's fair to be part of this flight on a road."
"I would probably stifle it if I took it," she says. "It's because I think it's such an outrage."
Wilkinson said she was writing a thank you note to Jacobus for providing the drug for free for so many years. "You just want every pharmaceutical product to be like theirs," she said.
Jeane Arlowe runs a private Facebook group for the LEMS community. She said members of her group "were shocked by the news and tried to navigate the quagmire of insurance and Catalyst registration forms". Arlowe added that beyond the price increase, there were other complaints.
"Most members of my support group were part of Jacobus DAP," said Arlowe. "Many have reported adverse effects on Firdapse since the beginning of life, such as heartbeat, severe headache, dizziness, exacerbated weakness, and gastrointestinal problems. that the Firdapse goes off too fast and disappears too fast or does not work at all. "
A mother cries
For Patel, this whole ordeal is overwhelming.
She grew up in South Africa during apartheid, often hiding from violence. His father has traveled the world trying to find a better place to live for his family – Europe, South Asia and South America. His family eventually settled in Canada before settling in the United States several decades ago.
She remembers learning about America as a girl – a glimmer of hope that pleaded for justice.
But his experience of this price hike has soured him. "This is America in which we live, "she said.
An America where a medicine can break a person. "What does the future hold for my children – and for the children of this country?"
She cried while describing that she did not want to be a financial burden for her family.
"It's just a lot of fear, I have to be honest," she cried. "It does not feel good."