Author: Caroline Trabucco

Critical Medical Infrastructure and the Right to Repair: H.R. 7956 and Beyond

In November 2020, Massachusetts approved a ballot measure expanding upon a 2012 “right to repair” law in the state. This law required car manufacturers to let consumers access data on repairs to their vehicles. The amendment went further allowing manufacturers until 2022 to install a standard open data platform which will give independent mechanics access to data typically sent to a remote server.

This win comes as the right to repair movement is gaining ground more widely. The movement backs various legislative initiatives that would prohibit the types of restrictions manufacturers put on product repair; limiting who is permitted to repair things and how available parts are is a common tactic used by manufacturers. From a pro-consumer perspective, repair industry interest groups argue that companies owe information, access, and reparable products to the people supporting them.

“[R]egular consumers should be able to repair the products they’ve purchased[.]” This is the lobbyist stance taken by the movement and consumer interest groups alike––consumer groups like iFixit, a website that makes electronic repair kits accessible for all. Lately, the movement has its sight set on medical equipment: iFixit recently released a comprehensive medical equipment service database in order to assist biomedical engineering technicians in repairing everything from imaging equipment to ventilators.

Making repair files available to repair technicians in hospitals has not been more of a necessary public good than right now. While American medical device makers drastically increased production of ventilators in the summer of 2020 to combat COVID-19 shortages, a problem persists: there aren’t enough specialists to operate, maintain, and monitor these complex machines, especially in rural areas. Additionally, the machines that were mass-produced to equip the Strategic National Stockpile at the height of the crisis were not built to last and require frequent maintenance.

Large device manufacturers shared the design specification “blueprints” for some of their ventilation devices, but this good faith act doesn’t go far enough. In the case of Medtronic, the manufacturer of the Puritan Bennett 560 portable ventilator, the public engineering files are complex, incomplete, and sometimes outdated.

With the United States being the global leader in new––and cumulative––COVID-19 cases, American legislators are taking notes from design guidelines in the European Union which approach right to repair from an energy efficiency perspective. While the legislative focus in the states is combatting the resource strain from the pandemic, legislators should aspire to mirror the zealous advocacy for repair rights seen in the EU.

The first brick was laid in August 2020, when Senator Ron Wyden (D-Ore.) and Representative Yvette D. Clarke (D-N.Y.) introduced H.R. 7965, The Critical Medical Infrastructure Right-to-Repair Act of 2020 (the Act), which would ease technician’s access to the information necessary for maintaining and repairing critical medical infrastructure. This initiative comes after a letter signed by over 300 technicians addressed to California legislators called for manufacturers to stop withholding necessary repair tools. The Act has an intended duration contingent on the life of the COVID-19 medical crisis, but the mechanism for accessible repair of medical equipment should extend beyond the point of crisis.

Equitable distribution of COVID-19 vaccine: State Deadlines and Social Media Ethics

As the October deadline for states to submit their COVID-19 vaccine distribution plan to the CDC approaches, public health officials across the country are feeling the pressure. Questions about storage, dosing, and the uncertainty of an authorized supplier continue to plague immunization managers. While it is a virtual certainty that frontline healthcare workers will be among the first to receive the vaccine, the distribution scheme beyond the folks in scrubs becomes a delicate ethical question.

In early October, the National Academy of Medicine revealed its recommendations for this very dilemma in a report commissioned by the National Institutes of Health and the U.S. Centers for Disease Control (CDC). The framework in the report recommends a four-phase distribution plan prioritizing health care workers and first responders as well as older adults and those with pre-existing conditions as predictable initial recipients. However, it also makes novel use of the CDC’s Social Vulnerability Index (SVI) to ensure equity in vaccine allocation. The SVI uses U.S. Census data to map fifteen social factors—including poverty and crowded housing—which are then used to estimate the type and amount of a resource needed by a certain community. 

While a valuable assessment tool for analyzing community vulnerability, some argue the SVI Is not robust enough, failing to capture rates of pre-existing health conditions known to increase the risk of mortality for COVID-19, and the capacity of community healthcare systems. In order to more accurately and comprehensively assess vulnerability, the Surgo Foundation created the COVID-19 Community Vulnerability Index (CCVI). The CCVI expands on the SVI foundation to offer a six-theme calculation for community vulnerability, which policymakers can rely upon when making decisions about where to direct resources.

Understanding COVID-19’s specific relationship to community vulnerability is essential. On a national level, the virus consistently has a disparate impact along race and class lines, as well as on individuals with intellectual and developmental disabilities.

Various state guidance publications all spell out a version of the same vague plan, deferring to CDC guidance and prioritizing “high risk” groups. Given that the CDC has the greatest influence over how vaccines are used and distributed by health departments in the U.S., it should promote and incorporate the robust analytical framework created by the Surgo Foundation as a socioeconomically conscious improvement on existing CDC guidance. Presently, the CDC includes the Surgo Foundation’s work in its COVID-19 Research Guide as a secondary data and statistics source.

The CCVI could be used to create community risk profiles and to overcome the infrastructure barriers to health access, like the strictures on telemedicine implementation in rural communities. Whatever needs are addressed by use of the CCVI, COVID-19 has exposed the inequity of the systemic healthcare structure in the U.S. as more dire than previously thought, and only an equitable approach to distribution will bring equitable relief.

Sight and Sound Separation: PREA Compliance Harms Juveniles in Adult Facilities

Solitary confinement, or the practice of isolating incarcerated people
in a cell for up to 23 hours a day, is a controversial practice often reserved
for punishing the bad behavior of adult inmates. Both psychologically and
emotionally damaging, the research on solitary confinement as an effective
disciplinary measure is limited. Its usage is especially dangerous for
juveniles and has been prohibited in many
states. So why does this practice persist despite the risk
of permanent damage
to the developing adolescent brain?

The answer is complicated. In states lacking policies that prevent
minors from being sentenced to adult facilities, juveniles can be housed with
adult inmates and are often immediately
upon entry. Youth incarcerated under these conditions are more
than any other subset of the American prison population to suffer
sexual violence. Incarcerated youth are also 36 times more
to commit suicide than youth housed separately from adult populations.

Considering these statistics, in 2003, Congress passed the Prison Rape
Elimination Act
that aimed to curb instances of sexual assault
in all correctional facilities. It took the Department of Justice nine years to
approve and begin implementing the standards established by the National Prison
Rape Elimination Commission. The PREA contains a provision requiring “sight
and sound separation,”
or mandatory segregation of inmates under the
age of 18 from older prisoners. While this provision can be satisfied by
measures such as constant supervision or preventing minors from sharing cells
with adults, it sometimes manifests in isolation as a penalty for minors, which
is not wholly prohibited.

The Justice
for All Reauthorization Act
of 2016 imposed a six-year deadline on states
to fully comply with PREA standards. Faced with the option of either
losing federal grant funding or exhausting the designated prison
they receive from the Department of Justice for alternative-compliance
efforts, some facilities subject youth to solitary confinement instead. The
majority of the youth detainees, already deprived of the beneficial
rehabilitative programming they
likely would receive at a youth facility, are non-violent

Amid the debate over the constitutionality of solitary confinement,
then-President Barack Obama announced a ban on the practice for juveniles in
the federal prison system in 2016. As of January 2020, seventeen
as well as the District of Columbia limit or prohibit solitary
confinement for minors. Other states would do well to follow suit. Not only is
solitary a poor solution, but it makes incarcerated minors more likely to
experience depression
and anxiety
, especially among those already suffering from trauma or mental illness
at the time of conviction. Exacerbating the conditions that contribute to youth
incarceration rates will worsen rates of recidivism.

This reality is particularly troubling for minors forced into solitary
confinement for safety reasons rather than as a disciplinary measure. Solitary
is categorized in two ways: disciplinary
or administrative segregation
. Administrative segregation is
the inverse of what youths face; it is intended to isolate an inmate who is
deemed to pose a threat to the rest of the population. Instead of using this
safety measure to isolate predators, the potential victims are isolated
instead. The effects of prolonged isolation pose physiological
threats to juvenile development
. The prefrontal cortex, the area of the brain
primarily responsible for impulse control and decision-making, is still
developing while these minors are in isolated lock-up. The cognitive
disturbances, psychosis, and sleep deprivation
can all accompany solitary confinement) may permanently inhibit these brain
functions in incarcerated youth. When the mental
health needs of minors
are not being met in adult facilities, hope for
rehabilitation is significantly reduced.

Sexual violence against minors in adult facilities must be addressed through
comprehensive reform and preventative measures. However, isolating juveniles in
solitary confinement is not an acceptable way to achieve PREA compliance. In
fact, due to the health risks associated with this practice, it may be just as
dangerous as housing minors and adults together. One productive solution to
this problem would be taking precautions around adolescent brain malleability,
such as assessing evidence which supports the benefits of raising the age
of criminal responsibility. 

If we operate a separate legal system for minors in this country, why
are we undermining it by allowing them to end up in the same place as adult