The day the truck arrived to deliver my husband John’s home dialysis supplies, our quality of life changed for the better. As family, we had been completely overwhelmed by his kidney failure; he had to make three, 100-mile trips to a dialysis center each week, to be hooked up to a machine for up to six hours. After visiting the center, he was drained, lethargic, and worn out. With home dialysis, our family could be a family again.
My husband was diagnosed with hereditary polycystic kidney disease (PKD) and knew he eventually would go into kidney failure. Most people are unaware that their kidneys have failed until they wind up in the hospital – which means they lose out on a comprehensive discussion of their treatment options. Patients, my husband being one, are often encouraged to do their dialysis at a center. I strongly believe that patients should receive accurate information about their option to dialyze in the comfort of their home. Research shows 40 to 50 percent of patients will choose home dialysis when educated about this option.
According to a report released this week by Matrix Global Advisors, patient education is just one of the obstacles to home dialysis – many of which are tied to federal policies – that can be easily overcome. Patients who understand their options and prefer to dialyze at home are often deterred by the requirement of a care partner for home hemodialysis. For low-income single patients in particular, the cost of hiring a care partner often prevents the use of home dialysis.
Medicare provides some assistance to dialysis patients, but gaps in coverage prevent greater use of home dialysis. Today, Medicare limits home hemodialysis sessions to three sessions per week, despite evidence that more frequent sessions would be beneficial. In addition, Medicare does not cover the full cost of training a patient to dialyze at home and requires patients to visit their physicians in-person once a month, even when the patient is in good health.
This Congress, policymakers have the chance to improve access to home dialysis.
In 2015, the House introduced a comprehensive telemedicine bill – H.R. 2948, the Medicare Telehealth Parity Act – would make it easier for home dialysis patients to use telemedicine connections and remote patient monitoring to connect with their physicians.
The Senate has made similar progress through the Senate Finance Chronic Care Working Group, which released some options to improve the care and treatment of Medicare beneficiaries, such as those with kidney failure. The options included expanding access to home dialysis treatment through the use of telemedicine. Hundreds of patient groups responded to these options; the responses even listed other ways to improve access to safe dialysis treatment, including education on dialysis options, care partner issues, and training. The Committee’s proposal is a start. It may be one of the few bipartisan measures on which Congress could act that would make significant improvements to the care received by dialysis patients when it is finalized later this year.
As a former member of Congress and caregiver to a dialysis patient, I urge both the House and the Senate to support policies to increase access to home treatments. I am glad John was fortunate enough to have this option. It significantly improved his and our family’s quality of life.
Thurman served in the House from 1993 to 2003, and was chair of the Florida Democratic Party from 2005 to 2010.