Category: Health Law


Delaying the Implementation of the Affordable Care Act

I have a question for health law folks or administrative law experts.  (I am neither.)  Exactly where is the Administration getting its legal authority to delay various provisions of the Affordable Care Act?  Does the statute have some catch-all provision that addresses this?  Do the particular provisions in question give HHS that power?  If it is not in the statute, then how can this be done?  Is impossibility a valid reason for delaying a statutory mandate with a deadline?


Diabetic Kids, All Kids, and School Nurses

Much to the relief of many parents whose children have diabetes, the California Supreme Court ruled recently in American Nurses Ass’n v. Torlakson that insulin shots can be administered by school personnel who volunteer and get trained for the job. School nurses, the court ruled, are not required under state law. That’s a good thing for the kids who attend the 95% of California public schools that have no fulltime school nurse. It’s good for their parents as well, since some schools were telling parents to come to school to give their kids their shots, something most employed parents had difficulty doing without upsetting their employers.

But to say, as the American Diabetes Association does, that the decision should make parents of diabetic kids feel confident that their child is in good hands at school is a bit of an overstatement. Whether they can get a routine shot of insulin isn’t the only health issue that kids with diabetes face during the school day. Some will face emergency health issues specific to diabetes, including hypoglycemia and hyperglycemia. Sometimes, it may take someone with medical training to know whether a shot should be administered at all or if it’s time to do something else, such as calling the ambulance. Diabetic kids also face health issues that other kids face. Like other kids, they fall off of climbing equipment and run into each other, and they may need to be assessed for concussions. Like other kids, they may get too hot when their team is practicing in hot weather, and someone with training will know best whether to get emergency medical care.  Like other kids, they may get sick at school and need to be assessed for whether they need an hour on a couch or a call to a parent. Just as important, someone needs to figure out if it’s time to sound the alert about a communicable disease at the school.

The California legislature apparently decided that school nurses aren’t necessary because of the expense. And indeed it may be difficult to justify spending money on nurses when paying for teachers sometimes seems like a luxury. But what the parents of those California kids with diabetes know, as does the American Diabetes Association, is that a nurse is a better and safer alternative for the kids than a volunteer staff member, even one who is trained. Looking carefully at the diabetic kids, further, helps us understand that school nurses are a very good idea for all of the kids, not just those with chronic conditions. This happens a lot when a person has a disability – solving that person’s problem can improve the lives of others. (Think about curb cuts for wheelchairs the next time you’re pushing a stroller or pulling a piece of luggage on wheels.) All parents, not only those with diabetic kids, need to have confidence that someone at the child’s school is capable of paying attention to serious medical issues. It’s a good issue for parents to join together to solve.



Injured Kids, Injured Parents and Tort Law

When a child suffers a long-term or permanent disability because of someone’s negligent or even intentional act, the child is not the only one whose life changes. The child’s special health care needs become part of the daily caregiving routines of the parents. Those needs might include, for example, taking the child to medical appointments, interacting with health care providers, delivering medical and other therapies, working with a school to develop an educational plan, advocating with social service agencies, etc. On average, a family caregiver for a special needs child spends nearly 30 hours a week caring for the child in ways that other parents don’t confront. Most of the caregiving parents are mothers, and most of them either leave work altogether or reduce their hours of work significantly. Other consequences that caregiving parents face include mental and physical health problems, social isolation, and the deterioration of family relationships.

Let’s say the child’s injuries result from a car accident or from medical malpractice. Does the law require the driver or the doctor to pay damages to the parents for the changes in their lives? Damages for direct costs, such as medical bills, are always allowed. When caregiving reduces the parent’s earning capacity, some states recognize claims for the parent’s lost wages. In others states, responsibility is limited to the cost of employing an unskilled medical aide. In the last group, the tortfeasor owes nothing to the parents.

I call the three approaches “20/20,” astigmatism, and blindness. “20/20” applies to situations where the child is viewed realistically, that is, as a person who, by reason of age and experience, is dependent on parents for direct care and for interacting with the outside world. Law and policy suffer from astigmatism when the child’s connection and dependency are acknowledged, but the consequences that parents face are blurred. (I’ve got astigmatism and can testify to the blurriness!) Blindness is what happens when, as one court argues, parents are responsible for their kids, no matter what – no sharing of costs is appropriate, regardless of the fact that the child would not need unusual caregiving but for the tortious injury.

In my current work, I’m trying to explain why many courts suffer from blindness or astigmatism. One reason is gender. Caregiving is considered women’s work, and women should do it with happiness and generosity, so their losses should not be monetized. If any loss is acknowledged, it should only be those losses that a man might also experience, that is, paying someone else to do the caregiving. Since, for reasons of both gender and race, we pay very little for caregiving jobs, it makes sense to compensate the caregiving parent (i.e., the mother) at the same small rate. Another reason is a lack of foreseeability – perhaps tortfeasors shouldn’t be expected to anticipate that injuring a child would affect a parent’s life, so it isn’t fair to make them pay damages for that harm. This perspective is consistent with a general lack of awareness about the lives of people with disabilities and the lives of their families. That degree of ignorance may have grown over the last half century in light of radical changes in social, legal, and cultural practices around health care generally and disabled kids in particular. Family caregivers now deliver much more medical care at home, for example, and the medical regimes of their special needs children are often more complex. Also, happily, more disabled children are living at home rather than in institutions, and many more are surviving into adulthood and beyond. At the same time, more mothers are now working outside the home. Many parents raising special needs children are doing it alone, so, if a mother has to meet the unusual demands of caring for a child with special needs, her chances of losing her job and falling into poverty increase. A third reason may be horizontal equity. The unusual caregiving demands of special needs children depend on the child’s characteristics, not on whether the source of the child’s special needs is a tort. Covering the lost wages of parents of tortiously-injured children puts those families at an economic advantage compared to families of other special needs children.

I look forward to hearing your thoughts on which of the three rules seems to make the most sense, and why.


When “Skin in the Game” is Literal

Back in the Bush years, health policy was all about making sure patients consumers had “skin in the game,” and faced real costs whenever they sought care. More cautious voices worried that patients often didn’t know when to avoid unnecessary care, and when failure to visit a doctor would hurt them. Now there is renewed evidence that the cautionary voices were right:

One-third of US workers now have high-deductible health plans, and those numbers are expected to grow in 2014 as implementation of the Affordable Care Act continues. There is concern that high-deductible health plans might cause enrollees of low socioeconomic status to forgo emergency care as a result of burdensome out-of-pocket costs. . . .Our findings suggest that plan members of low socioeconomic status at small firms responded inappropriately to high-deductible plans and that initial reductions in high-severity ED visits might have increased the need for subsequent hospitalizations. Policy makers and employers should consider proactive strategies to educate high-deductible plan members about their benefit structures or identify members at higher risk of avoiding needed care. They should also consider implementing means-based deductibles.

To put this in more concrete terms: “skin in the game” for many poor families may mean choosing whether to “tough out” a peritonsillar abscess or appendicitis, knowing that the temporary pain may allow them to pay rent, but also may lead to sepsis, necrosis, peritonitis, or death. As Corey Robin has observed, there is a philosophical vision affirming the imposition of such choices, but it’s not utilitarian:

By imposing this drama of choice, the economy becomes a theater of self-disclosure, the stage upon which we discover and reveal our ultimate ends. It is not in the casual chatter of a seminar or the cloistered pews of a church that we determine our values; it is in the duress—the ordeal—of our lived lives, those moments when we are not only free to choose but forced to choose. “Freedom to order our own conduct in the sphere where material circumstances force a choice upon us,” Hayek wrote, “is the air in which alone moral sense grows and in which moral values are daily re-created.”

For some, the choice is between investing in gold or cryptocurrencies; for others, between searing pain and eviction. But the market, in the “skin in the game” vision, is at least distributing these opportunities for self-disclosure through choice to all.

Is Big Data Overhyped?

ClickFor some in Silicon Valley, the rise of new data and communication networks creates unprecedented opportunities to solve problems like obesity, traffic, and flu pandemics. For example, an app like FitBit or LoseIt can keep track of calories and buzz a dieter once he goes over his daily limit. Futuristic early warning systems can warn drivers away from bottlenecks, and detect emerging influenza outbreaks.

Evgeny Morozov’s illuminating book To Save Everything, Click Here challenges both “internet centrism” and “solutionism.” The internet may, for instance, make traffic worse. Moreover, solutionism tends to “reach for the answer before the questions have been fully asked.” Is the problem really traffic, or something deeper in the way cities and opportunities are arranged? Solutionism tends to prioritize issues that widely accessible tech can address: small, algorithmically decomposable bits of wicked problems.

While a solutionist might think of gamified calorie counting as a wonderful new way to fight obesity, a more sober analysis of the problem will lead us to doubt the smartphone will make us svelte. Similarly, calorie counts may be a great disclosure tactic, but disclosure is only the first step on the road to changing behavior. And our food problem, like our traffic problem, may entail reconsideration of privilege, taste, and inequality as far deeper problems than individual struggles for self-control.

Big data has been linchpin of solutionist narratives about the future of tech in health care. However, there are still major challenges in data quality. Even if the data were perfect, causal inference still may be a challenge, as Hoffman & Podgurski explain:
Read More


Special Kids, Special Parents

First, many thanks to my exceptional and delightful colleague, Danny Citron, for inviting me to blog on Concurring Opinions. My blogging goal is to get you to focus on how law and policy could attend to the needs of family caregivers of special needs children. “Four in ten adults in the U.S. are caring for an adult or child with significant health issues,” according to a new Pew Research Center study. One would think that this large and growing population of family caregivers would command some attention. If they refused to do the job, after all, millions of frail elderly people, permanently-disabled veterans, and chronically-ill and disabled children could be left with nobody to meet their physical, emotional or medical needs. Social welfare organizations and institutions would be overrun, and social provision expenditures would skyrocket.

Refusing to do the job is not an option for many family caregivers, of course, for thousands of reasons, including love, duty and generosity of spirit. But many pay a price in terms of physical health, social isolation, and economic security. In my work about families raising children with special needs, I argue that we need to find ways to spread the costs so that they do not continue to fall almost exclusively on family members who step up.

Here are three examples of law and policy being blind (or at least astigmatic) to the impact of care-giving on these parents. First, when a child’s parents divorce or separate, family law entitles the parent who lives with the child to child support and, in some unusual situations, alimony. Child support is calculated on the basis of the child’s needs, and alimony is determined based on what the payee needs. Both assume that, ordinarily, both of the child’s parents will be economically productive. Where the parent’s special care-giving responsibilities interfere with that parent earning a living, however, child support and alimony are not usually adjusted–there’s no “chalimony.” Second, the public benefits system picks up very little of slack for parents when special care-giving responsibilities interfere with the parent’s earning capacity. Worse yet, since the mid-1990s, states became subject to increasingly stringent requirements in federal law about tying public benefits to the efforts of recipients to get and hold employment. A different route is not unimaginable: in 2009, a stipend was enacted for family caregivers of veterans left permanently disabled during their service in recent wars. Nothing similar, however, exists for parents. Third, if a child’s special needs affect his or her ability to benefit from school, federal law has guaranteed since the mid-1970s that the child will nonetheless be provided with a “free and appropriate public education.” The statute is not blind to the child’s caregivers; in fact, it gives parents specific rights in terms of participating in planning the child’s educational program. What it does not do, however, is make sure that parents can exercise their rights in ways that make sense if their lives are over-stressed because they are caring for special needs children.

As my work continues, I’m looking for additional examples of law and policy that attend to the needs of family caregivers for special needs children, and to those that don’t. If you can suggest a new avenue of research, please let me know.

Artificial Organ Allocation & Financing

Organ allocation always involves contestable values.  New technologies of regenerative medicine will raise similar concerns. Slate’s Michael Bennett offers the following set of dilemmas at the intersection of cutting edge health care and finance:

Our society at large resembles . . . the arrangement of classes defining the experience of contemporary air travel. Will you be able to afford an economy class liver? Perhaps a business class model? Will organ markets reproduce the qualitative differences we’ve come to accept with commercial air classifications? Should organ performance track organ price? . . . If you’re underwater on your liver mortgage, it’s safe to assume you’ll be hard-pressed to walk away.

As my co-blogger Deven Desai has argued, in a world of person-machine merger, “Simply saying you signed this contract, and we can do what we like is an error.”  Neither organs nor their financing should be “subprime” in the world Bennett describes.


Bones and Genes: Fortune’s Bones Redux

As a follow up to my post last week asking about human dignity, unburied bones and ownership of human cells, here are two related issues that appeared in the Sunday news.

The first item from Sunday’s Baltimore Sun is the belated report of a Reuters story about the controversy over disposition of King Richard III’s newly discovered remains uncovered in a municipal parking lot by the University of Leicester.  The long-lost remains of the King, who died in 1485, were exhumed, and the University was given permission to re-inter the remains in Leicester. But the King’s descendants objected claiming that they were not “consulted … over the exhumation and the license allowing the university to re-bury the King, and [that] this failure breached the European Convention on Human Rights.” They want the body buried in York.

The second item is an op-ed by two medical school academics, Jeffrey Rosenfeld and Christopher E. Mason, that appeared in Sunday’s Washington Post about Association for Molecular Pathology et al v. Myriad Genetics, et al, a case that will be argued in the Supreme Court on April 15th. This is important case that has been mentioned on this blog as recently as last February.  SCOTUS even featured a symposium spurred by the controversy. At issue is whether, on some level, human genes are patentable. Rosenfeld and Mason oppose patenting DNA.  On the other hand, much like the researchers discussing the HeLa cell, the respondents, Myriad Genetics, et al, argue that the issue is much narrower, namely whether the “human” aspect of the specific sequence of isolated human DNA is the result of the efforts of the respondent, and thus patentable. Read More