Before beginning home infusion therapy to treat her congestive heart failure, Betty MacNamee, 67, struggled to find the energy just to make it through the day.
Now, the pictures in her quickly bulging scrapbook tell a different story. In the last 2 ½ years, she remarried, cruised to Belize, Honduras and Mexico, rocked out to John Legend in concert and was awarded best costume at multiple Halloween parties. True, she couldn’t swim with the dolphins in Key Largo, Fla., but she did the next best thing – she kissed them.
All because of the around-the-clock home infusion of inotropic medication, which dramatically improves the efficiency of her heart. “It’s miraculous,” said Betty, who has 27 stents and is the veteran of three open-heart surgeries.
Betty is one of many patients with complex health conditions who rely on home infusion therapy – medication administered via a needle or catheter – provided in the comfort of their own homes. Home infusion is safe, effective and often less costly than inpatient care, and it plays an invaluable role in helping patients maintain their quality of life. 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
“This is not some medication you take for a headache,” Betty said. “It’s what literally keeps me alive.”
Betty, who lives near Sarasota, receives a weekly shipment of medicine. She has a port in her chest and the IV and medication resides in a small purse/fanny pack that Betty designs herself. “I can be very incognito,” she said. “People don’t realize that I have the IV drip all the time.”
Betty’s optimistic outlook has seen her through every health challenge. This includes the surgeries, the stents, four rounds of brachytherapy and being rejected for a heart transplant.
“I never let myself say I’m sick,” she said. “I joke a lot and laugh a lot. The power of the mind is the most miraculous thing.”
Love can also be miraculous, and Betty opened up her heart again in 2014, seven years after her husband passed. What started with a couple of dates with George (who everyone calls Buddy) led to wedding bells in 2015. In fact, it was her husband who suggested she keep a scrapbook to document her adventures.
“It’s so much fun to see all the wonderful things I’ve done,” she said.
Of course, Betty is more focused on adding to the scrapbook than just reflecting on it.
“I always have a project to do,” she said. “I live for tomorrow to finish the projects I start today.”
Clearly, Betty has no time to be in and out of hospitals to receive treatment that she manages so well on her own.
“Why would I want to go somewhere when I can be at home,” she said. “I’m not finished living; I’m going to make the most of this opportunity to live a normal life.”
“This is not some medication you take for a headache. It’s what literally keeps me alive.”