Bettemarie Bond is an overcomer.
She went to college, worked full-time as an occupational therapist, and bought a house in Levittown, despite rare disorders that require her to have all nourishment and medication pumped round-the-clock into a vein in her heart.
But last summer, when declining health forced her to go on disability at age 45, she faced a problem that floored her.
Bond discovered that she would qualify for Medicare this month. Unlike the private health insurance she had through her job, however, the government insurer would not cover her costly intravenous therapy at home, only in a medical facility.
"Does it make sense that Medicare would pay for the infusions if I stayed in a hospital or lived in a nursing home, yet the cheaper alternative of staying in my own home is not an option?" she said.
Patients in her predicament, as well as the home infusion industry and numerous lawmakers, say the answer is no.
For a decade, they have been pushing for legislation that would amend the Social Security Act to close this Medicare coverage gap. The Centers for Medicare and Medicaid Services says it lacks the authority to act independently.
The fifth and latest version of the proposed law, the Medicare Home Infusion Site of Care Act, has been sitting in congressional committees since it was introduced in the Senate and House with bipartisan sponsorship almost a year ago.
Will it pass in 2016? Proponents see a reason for optimism in a recent study commissioned by the National Home Infusion Association. The study, by the leading health-care consulting firm Avalere Health, concluded that home infusion therapy would save Medicare at least $80 million over 10 years.
"Now we have the data to prove it would save money," said Ken Van Pool, vice president of legislative affairs with the home infusion association. The industry group estimates on its website that the home infusion market represents at least $9 billion a year in health-care spending, "serviced by over 1,500 infusion pharmacy locations."
"This is good for the patient and good for Medicare's bottom line," Sen. Johnny Isakson (R., Ga.) said when he introduced the bill in the Senate.
No one knows exactly how many people are receiving infusions at home, but Van Pool guessed "upwards of a million." Many of those patients are fighting severe infections that require intravenous antibiotics temporarily or intermittently. Other conditions commonly treated with custom-made infusions include cancers, cancer-related pain, heart failure, hemophilia, immune deficiencies, and multiple sclerosis.
Isakson knows the benefits of home infusion from personal experience.
"Twenty-six years ago, in 1989, my youngest son was tragically injured in a horrible automobile accident," the senator said in a news release when the bill was introduced last January. "His ability to recover at home rather than a hospital was less expensive and better for his quality of life."
In the 1990s, private insurers and most state Medicaid programs recognized the financial and medical advantages of shifting intravenous therapies from costly settings such as hospitals to patients' homes whenever possible. Besides simplifying access to care, home infusions reduced the risks of infections acquired in hospitals or nursing homes.
Medicare, however, was different. As the vast federal program evolved with its complicated coverage components, home infusion fell partly through the cracks. Medicare does cover the actual drugs given in the home. But it pays nothing for the supplies - tubing, bags, needles, pumps - or the administrative, pharmacy, and nursing services that may be involved.
"I believe it was an unintentional gap in the Medicare regulations, but it really is time to fix it," said Thomas D. Brown, director of Jefferson Home Infusion Service, part of the hospital system.
Brown estimated that a patient getting a home infusion of antibiotics would have to pay $50 a day out-of-pocket for medical supplies and services.
Many patients can't afford to pay out of pocket or to even buy an extra insurance plan to supplement Medicare.
"We deal with this issue every day of the week," Brown said. "These patients are literally being forced into another site such as a skilled nursing facility or an outpatient infusion center."
Bond's needs are particularly extreme and complicated.
Because of digestive and metabolic disorders, the Bucks County resident uses portable pumps to infuse all nourishment - vitamins, minerals, fats, hydration - plus pain medication to manage pancreatic inflammation and bile duct spasms.
"I can't go even an hour without infusing," Bond explained in a letter to lawmakers asking them to cosponsor the home infusion bill.
She would need to make so many trips a day to an outpatient clinic that it would be impractical, she said. And living in a nursing home would dramatically increase her risk of colds and infections that could become life-threatening.
For now, her solution is a Medicare "Advantage" plan - offered by a private company under contract with Medicare - that has a $6,900 annual deductible. She spent many days making phone calls before finding the plan in November, with help from the teachers' retirement system. She used to work with autistic children in a Bucks County regional service agency.
"What is scary is that this plan may not be available next year, and I'll be back to the nightmare I was in in November, thinking I won't have insurance coverage for the IV's that keep me alive," she said, "and that I may have to move into a nursing home."