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Statewide View: Dying at home can come at a high cost, including in Minnesota

From the column: "Having to pay for the electricity needed to run life-saving medical equipment can be a matter of life and death."

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In 2017, Victoria’s husband was diagnosed with pulmonary fibrosis and started on oxygen therapy at home in Tower. While fortunate to have her husband home with loved ones during this difficult time, Victoria struggled for years to absorb the high cost of the electricity needed to run the machine.

A recent study found she's not alone. Operating a typical oxygen concentrator can cost more than $1,000 a year. For families on fixed incomes, that can produce significant financial hardship.

Doctors, like the one who cared for Victoria’s husband, can easily write a prescription for expensive, durable medical equipment such as an oxygen concentrator, and medical insurance almost always covers the equipment cost. But an oxygen concentrator is useless without a reliable supply of electricity, and a patient could suffer grievous harm if the electricity to the home is terminated for non-payment. Doctors cannot “prescribe'' electric-bill payments, nor do insurers cover costs directly resulting from the use of the equipment.

Households with someone seriously ill are already often struggling to meet their basic expenses, especially if the ill person was previously the breadwinner. Having the electric bill increase hundreds of dollars a year or more makes it more likely the patient won’t use the vital equipment or the family will have to cut back on food or fall behind on rent.

It was only after Victoria’s husband passed away earlier this year that his family realized how much running the oxygen concentrator cost. The household’s electricity bill dropped by 50% the first month the machine was turned off.

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Millions of American households struggle to pay their utility bills. A recent U.S. Census Household Pulse Survey found that 30% of households reported that they “reduced or forwent expenses for basic household necessities, such as medicine or food, in order to pay an energy bill.” The vast majority of those households don’t need to power expensive machines. For those households that do, the burden of having to pay energy bills is even greater.

While Minnesota has laws on the books that can protect some seriously ill customers from having their service terminated if a medical emergency exists or medical equipment requiring electricity necessary to sustain life is in use, frontline advocates for those customers note that the companies inconsistently reject letters from doctors as not being sufficient, even when the health of the customer is at risk. All utility customers must be made fully aware of the existence of the serious-illness protections that are available, and there must be consistent application of the law so customers truly in need are not denied protection.

States should require that form letters documenting serious illnesses be made widely available and indefinitely renewable, as long as a serious medical condition exists. And availability of those extensions should be determined by the doctor’s informed medical opinion.

No one should be at risk of dying because they cannot pay the electric bill.

Our medical-insurance systems should also make contributions to the increased utility bills, based on how much electricity equipment needs to operate. An oxygen concentrator may cost $1,500 to $3,000 depending on the type and region, and insurers routinely pay that cost. Yet the equipment is worthless without a dependable supply of electricity. Insurers should in fact ensure that the equipment will be operable.

States are the regulators of utility companies and must also take broader steps to protect not only those whose lives depend on medical equipment but other vulnerable households as well. In Minnesota and other cold-weather states, there are rules to protect vulnerable customers from having their utility service terminated during the winter. States that don’t already have winter moratoriums on terminations of service should adopt them, and hot-climate states should adopt summertime protections.

The federal government should play its part as well. The Low-Income Home Energy Assistance Program, often called “fuel assistance,” must be adequately funded. According to the National Energy Assistance Directors Association , the limited fuel assistance funding reaches less than 20% of eligible households.

Having to pay for the electricity needed to run life-saving medical equipment can be a matter of life and death. Families like Victoria’s should not have to worry about how sudden and dramatic increases in their electric bills will be paid. Insurers need to expand their coverage to include a reasonable amount of electricity used by the equipment, and Minnesota needs to do more to make sure medically vulnerable households are protected.

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Dr. Peter Kahn is a pulmonary and critical care fellow at the Yale School of Medicine, and Charles Harak is a staff attorney at the National Consumer Law Center (nclc.org) in Boston. They withheld the surname of the Minnesota family featured in this commentary to protect privacy but provided the name for verification to the News Tribune Opinion page.

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Dr. Peter Kahn
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Charles Harak

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