Imagine being so sick that you cannot bathe or dress yourself without assistance, never mind shop for groceries or go for a gentle walk around your yard or neighborhood. Now, imagine there’s a medicine that can be administered at home that helps you overcome those problems and improves quality of life, but for legacy historical reasons your health insurance — Medicare — will not pay for it until 2021.
That’s the predicament facing thousands of Americans with congestive heart failure on Medicare who cannot afford to pay for home infusion therapy — their lifeline to an enjoyable existence for a few more years.
Ironically, if those patients choose to receive their care in hospital, which costs about $2,000 a day and where the patient’s quality of life suffers tremendously, Medicare would cover their treatment even though costs to the government health insurance plan are significantly more than home infusion therapy.
It’s a set of circumstances that leaves thousands of patients with a Hobson’s choice — receive care in hospital, with a dreadful quality of life, or try to pay for a treatment at home that costs too much for many to afford, about $200 a day.
Home infusion is paid for by private insurance (and also by Medicaid, the veterans program Tricare and Medicare Advantage) but will not be covered by traditional Medicare until 2021. Medicare used to pay more for the infusion drugs to compensate for the fact that it did not pay for the service, but that changed last December due to unintended consequences created when Congress passed the 21st Century Cures Act.
That law was intended to boost medical research into curing cancer, among other things, winning bipartisan support. However, it cut reimbursement by more than 95 percent for many infusion drugs, including one key medication that improves blood pressure for congestive heart failure patients. The law did create a new benefit to reimburse home-infusion providers (to cover the costs of nurses and pharmacy technicians), but that provision only takes effect in 2021, four years from now. That funding gap — reduced drug reimbursement without the new benefit in place — was not intentional, but it’s having a devastating impact on patients. Since monthly Medicare payments have dropped from about $11,000 per infusion patient to $500, some health care providers have stopped serving Medicare beneficiaries and others face a Hobson’s choice with these patients. The good news is that a solution is emerging to accelerate access to home infusion if Congress acts quickly.
As an advanced practice registered nurse specializing in cardiovascular disease at the University of Kentucky Hospital, I see the strain on patients. One systolic heart failure patient, who only draws about $1,000 monthly in disability payments, could not afford to pay for treatment at home. As a result, he would become bedridden instead of being up and about, enjoying his hobby of working in his wood shop at home. Others, who had been able to walk and enjoy basic mobility while on medication, are back in wheelchairs. Having a condition that can be treated but is not being treated for financial reasons beats down these patients, emotionally and physically. And as a nurse serving on the front lines, I desperately want to preserve access to infusion services for my elderly Medicare patients.
There are strong clinical reasons to promote home infusion treatment. For some patients, home infusion allows them to become physically active and healthy enough to enter a cardiac rehab program in order to move to the next step, which is a valve or heart transplant. Some others get healthy enough on home infusion to enjoy some degree of lasting recovery, and can even transition off the treatment. For many others, home infusion is the last and only option for them to live out their life with some degree of quality and dignity. Without the medications, many patients don’t have sufficient blood pressure to tolerate the other medications they need. In the end, many patients go without care, others move to a to hospice — options that significantly reduce quality of life for their remaining time.
It also makes more sense to treat these patients at home because treating them in hospital brings the risk of acquiring a hospital-acquired infection — about 1 of every 25 hospitalized patients contract an HAI, costing tens of thousands of lives each year. Since most infusion patients are immunocompromised they have greater risk for infection, adding to the imperative to treat them at home. Home infusion treatment also significantly reduces hospital readmission rates.
Acknowledging this unintended crisis, the Centers for Medicare and Medicaid Services has said it can implement the home infusion benefit in 2019, but we need payments restored for 2018, because thousands of patients cannot wait another year. The U.S. House of Representatives has already passed “The Medicare Part B Home Infusion Services Temporary Transitional Payment Act” to cover payments in the interim. Now, the U.S. Senate should pass that measure.
This is not about money — the Congressional Budget Office says home infusion is the most cost-effective way to treat these patients — it’s about fixing a legacy quirk that is putting at risk the quality of life for many Americans. These patients want to enjoy the simple things in life, from playing with their grandchildren to going fishing. I’m no expert about politics in Washington, but that seems like something we should all support.
Peggy Hardesty is an advanced practice registered nurse specializing in cardiovascular disease at the University of Kentucky Hospital.
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