Told that his heart failure had progressed, that his heart would soon give out on him and to put his affairs in order, John Ryals wrote a check for his funeral, spoke with the preacher and confirmed plans for his memorial service. That was a year and a half ago. Today, the 84-year-old works 25-30 hours a week as a real estate agent, enjoys going to the theater and, most of all, appreciates being a productive member of society. It’s all possible because he receives around-the-clock home infusion of inotropic medication, which helps his heart work more efficiently.
“I can’t emphasize enough how important it is to me. It’s life-saving. Without it, I would be dead.”
A home infusion service provides the intravenous (IV) medication and supportive care that allows John to continue to live in the Brandon, Fla., home he’s owned for 40 years.
His medication and care is paid for by his Medicare Part B plan. Unfortunately, an unintended consequence of the 21st Century Cures Act, passed by the U.S. Congress and signed into law in December 2016, is creation of a gap in Medicare coverage for certain home infusion drugs, effectively taking away funding for patient access to high quality home infusion.Take action to amend the Cures Act
John can’t imagine not being able to receive his life-saving care at home. “Going to the hospital for the infusion wouldn’t work because I get it 24 hours a day, and who in the world would want to live in a nursing home if they didn’t have to?” he said.
John was diagnosed with heart failure 12 years ago, and also has chronic obstructive pulmonary disease (COPD). He has had five stents placed to increase blood flow and was given a pacemaker to control his heart’s rhythm. He was hospitalized when he began having difficulty breathing a year and a half ago, and doctors determined he had progressed to advanced heart failure. He was given infusion of inotropic therapy in the hospital, which helped him breathe much easier, but was told there were no more options to treat his heart failure. When he was sent to another hospital, he learned that he could continue the infusion therapy at home through a peripherally inserted central catheter (PICC) line in his chest.
Before discharge, a nurse from the home infusion provider delivered the medication to his bedside so he was able to bring it home with him. The provider delivers the medication to his home weekly, checks in with him every Monday to ask about his health, weight and upcoming appointments, and is available around the clock to answer questions or provided needed care. For example, a nurse came to his house at 2 a.m. when the line that provides the medication broke.
The inotropic infusion is working wonders – his heart’s pumping efficiency improved to 36 percent, up from 15 percent before infusion therapy. The medication resides in a fanny pack that he wears constantly and allows him to get out and about. A 14-year member of the Florida House of Representatives and speaker pro tem who retired from politics in 1980 after his son died, John likes being as active as possible. In addition to selling homes, he regularly goes to the pistol range to shoot, enjoys dinner with his friends a few times a week and likes taking in shows at nearby performing arts centers. A self-described “shopaholic” he likes walking at the mall and window shopping.
He appreciates that home infusion allows him to do just about everything he used to be able to do.
“At my age and where I am, other than my relationship with Jesus Christ, the most important thing to me is getting the medication I need on time at home,” said John. “It’s changed my life in every way possible.”
“I can’t emphasize enough how important it is to me,” said John. “It’s life-saving. Without it, I would be dead.”