Month: December 2021

More than five million Americans use wheelchairs. Getting one repaired is hard.

Wheelchairs restore mobility to people who are unable to walk or have limited ability to do so. Over a lifetime, this may describe many of us due to changes in health, injuries, neurological conditions, or disabling conditions like arthritis. So, when wheelchair technology or parts quit working, a quick fix would seem essential, right?

I know this firsthand. Unable to walk from decades with multiple sclerosis, I keep small scooters on every floor of my 1911 home, which is further adapted for accessibility with stair lifts and ramps. One day when I turned on my second-floor scooter-type wheelchair, sparks arced from the tiller opening atop the steering column, followed by smoke and the acrid smell of burning electrical wires. It was late on a Friday afternoon. No emergency repair service exists for wheelchairs or scooters. Now what?

Wheelchair repair delays are far more than an annoyance

Wheelchairs allow millions of Americans with mobility disability to participate in daily activities and community life (note: automatic download). We know this improves physical and mental well-being and overall quality of life.

On that Friday, my only option was to have my husband bring my first-floor scooter to the second floor. There I stayed, awaiting repairs on the now-inoperable scooter while my husband brought my meals upstairs. Because I have used the same small assistive technology company for more than 20 years — and have the owner’s cell phone number — by midafternoon on Tuesday, I once again had functional scooters on both floors. My confinement had lasted only four days. I know I was lucky on many levels.

But what if I lived alone, didn’t have another operational scooter, or hadn’t been able to wait four days? And what about people experiencing far longer waits for help with an essential device? While the 1990 Americans with Disabilities Act (ADA) prohibits discriminatory policies and requires physical accessibility in public services and spaces, it says nothing about this issue.

How often do wheelchairs break down?

Ideally, a wheelchair should be safe, reliable, and match your activity goals and functional needs. It should provide strong postural support and seating that protects against pressure injuries. Depending on strength and endurance, you might wish to self-propel a manual wheelchair. Or you might need a mobility scooter or power wheelchair propelled by a battery-powered motor, one that might even have sip-and-puff operational assistance or a chin-operated trackball.

Regardless of complexity, however — from basic manual wheelchairs to sophisticated rehab power chairs — all wheelchairs can break down, leaving their users stranded. Factors like broken pavement, inadequate curb cuts or soft terrain, steep inclines and inclement weather, and poor wheelchair design pretty much guarantee this.

In one study of 591 wheelchair users with spinal cord injury, 64% reported needing at least one wheelchair repair in the past six months. Among users requiring just one repair, wheels and casters posed the most difficulties for manual wheelchairs (46%). Electrical systems (29%) and power/control systems (27%) caused most problems for power wheelchair users. Rates of wheelchair breakdowns have increased in recent years, and vary across wheelchair manufacturers.

Repairs are costly, in more than one way. A survey of 533 wheelchair users with spinal cord injury found:

• Out-of-pocket repair costs ranged from $50 to $620 (the median, or midpoint, cost was $150).
• Time spent experiencing adverse consequences from wheelchair breakdown before repair ranged from two to 17 days (five days was the median).
• Among those reporting adverse consequences, 27% were stranded inside their home, 12% were stuck in bed, and 9% were stranded outside their home.

Wheelchair repair delays are lengthening: Could right to repair laws help?

Lengthening repair delays (automatic download) that heighten risks to consumers’ physical and mental health have caused many wheelchair users across the US to voice their outrage. However, reducing repair wait times isn’t simple. Medicare moved to competitive bidding in 2011, causing most small vendors — like my assistive technology company — to leave the business.

The two behemoths owned by private equity firms that now dominate the marketplace focus on boosting profits and cutting costs. By reducing technician hours and parts inventories, restricting consumers’ access to parts and software passcodes, requiring pre-approvals from insurers for repairs, and other practices, these companies virtually ensure delayed repairs.

Furthermore, Medicare and other insurers do not pay for preventive maintenance such as tightening loose bolts and cleaning casters, allowing problems to go undetected until breakdowns occur. Training can allow some wheelchair users to perform preventive maintenance tasks, but such training programs are not widely available.

Trying to reduce repair delays, Colorado’s governor recently signed the first “right to repair” law in the US for power wheelchair users. Complex software programs control many functions of power wheelchairs, and by holding this software as trade secrets, the manufacturers and large vendors have forced consumers needing repairs to use their services.

Much like recent right to repair laws for cars, the Colorado law mandates that power wheelchair owners and independent repair shops have access to the embedded software tools, parts, and other resources required to diagnose, maintain, or repair power wheelchairs. Other states, such as Massachusetts, may follow. Power wheelchair users in Massachusetts are testifying at public hearings about their repair horror stories to motivate the legislature to act.

Given the complexities of the wheelchair industry, it’s not clear whether right to repair laws will shorten repair times for power wheelchairs. Additionally, this law does not address manual wheelchairs or scooters like mine. Clearly, much more remains to be done to ensure timely wheelchair repairs. As wheelchair use surges, with growing numbers of baby boomers with mobility disability wanting to remain active in their communities, solving the wheelchair repair crisis is increasingly urgent.

About the Author

Lisa I. Iezzoni, MD, MSc, Contributor

Lisa I. Iezzoni, MD, MSc, is a professor of medicine at Harvard Medical School, and is based at Massachusetts General Hospital in Boston. Dr. Iezzoni studies health care experiences of persons with disability. She is a … See Full Bio View all posts by Lisa I. Iezzoni, MD, MSc

Polio is a potentially life-threatening or disabling illness that spreads from person to person. Thanks to vaccination, the United States has been polio-free since 1979, and the spread of this highly contagious disease has been interrupted in most countries. Yet on June 22, the United Kingdom Health Security Agency announced that it had detected poliovirus in a most unexpected place: the sewers of London.

Over the past several months, scientists at the agency repeatedly found poliovirus in London sewer water. The viruses were genetically similar, suggesting that they were the result of limited spread within a family or close-knit community. Just how concerned should all of us be about this news?

Health clues found in wastewater

Sampling of wastewater for genetic material from viruses is a powerful tool used by epidemiologists to track outbreaks of polio and other diseases. Surges in the amount of SARS-CoV-2 RNA in Boston wastewater have been highly predictive of COVID outbreaks. Wastewater may also help to detect the spread of influenza and antibiotic-resistant bacteria.

Poliovirus infection was once a common and dreaded disease. Most people with poliovirus either had no symptoms or mild gastroenteritis (stomach flu). But one in 100 people developed paralysis, or poliomyelitis. In half of the affected patients, this paralysis was permanent.

In the UK, wild poliovirus has been eliminated since 1984. Although great progress has been made in many parts of the world, complete eradication of polio has been elusive. Pakistan and Afghanistan have never been free from wild-type polio, and outbreaks have recently taken place in Malawi and Mozambique, countries which had previously eliminated polio.

The reasons for this backsliding are complex. Some contributing factors are diversion of scarce resources toward the COVID-19 pandemic, backlogs in vaccine manufacturing, anti-vaccine agitation, and violence directed at vaccine workers.

Another problem is vaccine-derived poliovirus. In the United States and most other countries, injections containing killed viruses are used. While these vaccines are safe, they are less effective than oral vaccines at breaking the chain of polio transmission. Oral vaccines stimulate long-lived immune responses in the lining of the intestines, where polioviruses replicate. Unfortunately, oral vaccines contain weakened but live viruses, which occasionally revert to a more dangerous form. In fact, the poliovirus found in London was a vaccine-derived strain that the infected individual had likely acquired from travel abroad.

Who is at risk for poliovirus stemming from this source?

Vaccine-derived viruses pose little risk to highly vaccinated populations, but they are able to spread in communities with low polio vaccination rates. In some cases, this can even cause paralytic disease. Because of these risks, steps are being taken to gradually phase out the use of oral polio vaccines.

If you’re concerned about polio, the best protection against this disease is vaccination. Children should receive a full series of four shots of inactivated polio vaccine, given at specific intervals, that helps with developing immunity.

Nationwide, rates of childhood polio vaccination in the United States are still high (nearly 93%). However, some infectious disease experts worry that the weakening of vaccine mandates in some areas has created islands of vulnerability in this sea of immunity. Communities in the US with low childhood vaccination rates have been vulnerable to large measles outbreaks in recent years, and might also be vulnerable to polio outbreaks.

With few exceptions, adults who were fully vaccinated as kids do not need booster shots. These exceptions include travel to a country with active polio transmission, laboratory work with poliovirus, or providing health care to polio patients and their close contacts. A single lifetime booster dose of inactivated polio vaccine is adequate for these high-risk scenarios.

About the Author

John Ross, MD, FIDSA, Contributor

Dr. John Ross is an assistant professor of medicine at Harvard Medical School. He is board certified in internal medicine and infectious diseases, and practices hospital medicine at Brigham and Women’s Hospital. He is the author … See Full Bio View all posts by John Ross, MD, FIDSA