At any time, about 4,000 patients in the United States are waiting for a heart transplant. The agonizing wait for these men and women can be as short as a few weeks but can extend to more than a year.
Throughout their wait, maintaining hope and a positive spirit is imperative. Thankfully, home infusion therapy allows most patients to pass that time at home. Right now, however, a delay in payment for services is forcing a growing number of patients to endure that difficult wait from a hospital bed.
Worse still, because of the risks of having to endure that wait from a hospital, some patients are being encouraged by their clinicians to undergo surgery to implant a left ventricular assist device, or LVAD — implanting a mechanical pump inside the patient’s chest to aid their weakened heart pump blood. In many cases, that expensive surgery could be avoided if the patient was able to wait for a transplant at home.
Candidates for heart transplants are among our most vulnerable patients. They suffer constant pain and fatigue because their heart is failing, need daily blood draws and have sore, bruised arms from frequent IV changes. Twenty years ago, most of these patients waited for their transplants at the hospital. In recent years, however, we have developed effective therapies to treat these patients at home with a specialized nurse administering their medications.
Home infusion treatment has clinical advantages, allowing patients to remain physically active and relatively healthy during their wait. Some patients can perform light work, others can travel to visit family and friends. All of them have more hope and optimism than patients waiting in a hospital. Without home infusion, many patients go without care or move to a hospice, worsening their quality of life. These patients also have greater risk for infection, adding to the case for treating them at home (which also reduces the risk of infection and reduces hospital readmission rates.) It’s cheaper, too, costing about one tenth of the price of a hospital stay.
How did we get here, inadvertently setting back by two decades the advances made caring for patients awaiting heart transplants? Ironically, by trying to promote medical research and cure cancer. On Dec. 13, 2016, Congress passed the 21st Century Cures Act (CURES,) winning bipartisan support for its laudable ambitions.
Unfortunately, the law cut reimbursement by more than 95% for many infusion drugs, reducing monthly Medicare payments from about $11,000 per infusion patient to $500. While it did create a new benefit to reimburse home-infusion providers (to cover the costs of nurses and pharmacy technicians), that provision only takes effect in 2021. That has caused a funding gap that’s hurting patients by slashing drug reimbursement without a new benefit in place.
Private insurance, Medicaid, Tricare (for veterans) and Medicare Advantage, still pay for home infusion, but it is not yet covered by traditional Medicare after the passage of CURES.
As medical director of the Heart Transplant Program at University of Maryland Medical Center, where we undertake about three dozen transplants annually, I see the impact that this unintended funding gap has on patients every day.
In practical terms, as many as 40% of our transplant patients are impacted — staying in the hospital awaiting a transplant, or undergoing an invasive LVAD surgery because waiting in the hospital was too high a risk for the patient. As a result, on any given day, two or three patients are stuck in our hospital, sick and miserable, there just to receive medicines that would be administered at home if they had other insurance. Other clinicians tell me that situation is being replicated at heart transplant facilities across America. While patients matter most, the situation adds strain to medical staff, forcing us to work the system to justify admissions that are only needed because of a peculiarity of the law.
The good news is that the Centers for Medicare and Medicaid Services (CMS) says it can implement the home infusion benefit in 2019, but the law now needs to be amended to implement the transitional benefit starting on that date — otherwise hundreds of patients will be forced to live in hospital beds rather than enjoying life in the comfort of their own homes with their loved ones.
We’re halfway to a solution. The U.S. House has already passed legislation that addresses this issue. Now, we need the U.S. Senate to approve that measure. A vote could come as soon as this month. It’s the right thing to do for our patients and our healthcare system, too.
(Dr. Erika Feller is assistant professor of medicine at University of Maryland School of Medicine and medical director of the Heart Transplant Program at University of Maryland Medical Center.)
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