NEW YORK (CBSNewYork) — A recently-passed act of Congress may have the unintended effect of taking life-saving medication away from tens of thousands of heart failure patients.
The bill was meant to fund research into cures for cancer and other diseases.
As CBS2’s Dr. Max Gomez reported, the 21st Century Cures Act, passed with overwhelming bipartisan support and signed into law in December, was called an innovative game-changer for vital medical research.
But a provision to help pay for the bill by lowering drug costs has inadvertently put more than 300,000 lives at risk.
You wouldn’t know it by looking at her now, but just a short while ago, Mary Obuchowski not only could not walk – she was actually near death. She said she was repeatedly in and out of the hospital nearly every six weeks.
“I would pass out and fall on the floor and wake up, and that’s how I actually couldn’t breathe – just could not breathe at all; couldn’t get enough air,” Obuchowksi said.
Obuchowski is in what is called class 4 heart failure – her heart to weak or stiff to pump enough blood to keep her lungs and legs from filling with fluid.
“The oral medications are not enough to keep them out of the hospital; give them any quality of life,” said Dr. Robert Berkowitz of Hackensack University Medical Center. “If we just treat the symptoms, they won’t get better. There will be inexorable progression towards death.”
The only thing that keeps Obuchowski alive and relatively well is continuous, 24/7 infusions of specific heart medications that can only be given intravenously – with the aid of special pumps and with regular at-home monitoring by trained medical personnel.
But when the 21st Century Cares Act was signed into law in December, there contained a well-meaning provision to lower the costs of some chemotherapy and heart drugs like Obuchowski’s. But it has ended up meaning trouble.
“It cut the opportunity to provide infusion services at home to patients who need the drugs and could receive the therapy at home,” said Tyler Wilson, chief executive officer of the National Home Infusion Association. “The margin between the old price and the new price is what allowed the services to be provided.”
In other words, the higher prices allowed the specialty pharmacies that formulated the drugs also to provide at-home services that enable the continuous infusion essential for heart failure patients – infusion that have given Obuchowksi her life back.
“I go food shopping. I go to the Villa Roma resort… and saw the shows; was up 12 hours a day; don’t feel tired. It was unbelievable,” Obuchowski said. “I just can’t believe how my life absolutely turned around.”
Curiously, private insurance plans do reimburse for home infusion services. It is Medicare that does not cover the cost for the health care personnel that make at-home infusion possible.
Medicare will start reimbursing for that, but not until 2021 – so Congress is looking at ways to close that gap.