By Laura C. Hoffman
The aging population is growing at an extraordinary rate in the U.S. By 2040, it is anticipated that the U.S. aging population (defined as those ages 65 and older) will double, totaling 80 million.
Given this growth, preventing elder abuse must be at the forefront of policymaking. The U.S. Centers for Disease Control and Prevention (CDC) has recognized elder abuse as a “serious” problem that is commonly occurring, yet significantly underreported, in the U.S.
By Sharona Hoffman
Patient-reported outcome measures (PROMs) are questionnaires that patients fill out on tablets or other computers or devices. They ask patients to check boxes in answer to questions about their symptoms, treatment effects, and ability to function physically, emotionally, and socially. They thus may solicit very sensitive information about matters such as anxiety, depression, and sexual satisfaction. To illustrate, a query might be “in the past month, how often did you have a lot of trouble falling asleep,” and the patient is asked to check “never,” “rarely,” “sometimes,” “often,” or “always.”
PROM responses can be used for purposes of clinical care, research, quality improvement, Food and Drug Administration (FDA) approval of drugs and devices, and even insurance reimbursement. For example, insurers hypothetically could decide to decline coverage of particular treatments based on PROM responses indicating that many patients find them to be unhelpful.
I first became interested in patient-reported outcome measures because of an experience my husband had. Andy has Parkinson’s disease, and one of the neurologists he saw asked him to fill out a long questionnaire on a tablet computer before each appointment. This task was difficult for Andy because he had a hand tremor, and it was stressful because Andy worried that he would not have time to complete the survey before his appointment began. Moreover, Andy’s physician never referred to his responses and appeared never to look at them. Upon investigation, I found little to no analysis of PROMs in the legal literature, so Andy and I recently published a law review article about them.
Kristofer Smith, MD, MPP is the Chief Medical Officer of Landmark Heath, where he oversees efforts to establish a high-quality and clinically effective home-based medical care model for patients with serious illness.
We sat down with Dr. Smith to discuss his experience caring for patients with serious illness and developing programs to provide health care at home, among other topics. The following interview has been edited and condensed. Read More
By Ashley Shew
Far too often, when people write and talk about technology and disability, stories are deeply shaped by ableism. Often when devices are painted as “solving the problem of disability” or “empowering disabled people,” they suggest that being disabled is itself a problem, and that people should try to be as nondisabled as possible. But pretending to be nondisabled is not a great way to live — to be in hiding or denial, to not give your body and mind the rest they deserve, to hurt yourself trying to live up to expectations and infrastructure sometimes literally designed to keep you out. Technology itself gets painted as heroic and important — and, please, investors, throw more money at the tech industry — when any disability is mentioned. Disability is often appealed to as a justification for technological development, and as a moral imperative toward investment in technological research. This is technoableism as I describe it in my book, Against Technoableism: Rethinking Who Needs Improvement.
By James René Jolin and Susannah Baruch
On July 13, 2023, the United States Food and Drug Administration (FDA) approved Opill (norgestrel) as the first daily oral contraceptive available for non-prescription use in the U.S. While the timeline for availability and price of Opill will ultimately be set by its manufacturer, Perrigo, this recent move represents a significant step forward in improving access to contraceptive health care. Indeed, shortly after Opill’s approval, the American College of Obstetricians and Gynecologists described the FDA’s decision as “a critically important advancement in the accessibility of reproductive health care.”
In response to this development, Petrie-Flom Center intern James René Jolin and Executive Director Susannah Baruch sat down to discuss its legal, regulatory, and public health implications. This interview has been edited for brevity and clarity.
By Carmel Shachar
This year, the American Board of Obstetrics and Gynecology (ABOG) — the organization that runs the exam doctors must take to become certified in obstetrics and gynecology (OB-GYN) — is requiring all candidates to attend in-person examinations in Dallas, Texas. By doing so, ABOG is failing its duties to its membership by asking the practitioners who are most likely to provide abortion services to travel to a state with a legal regimen that is particularly hostile to them.
By Katherine A. Macfarlane
In May 2023, Mass General Brigham instructed its patients that they “cannot ask staff members to wear a mask because our policies no longer require it.”
Following patient protests, the hospital updated its policies with an imperfect fix, announcing that “patients can ask, but providers determine when and if masking in a particular situation is clinically necessary.”
This episode highlights the uneasy circumstances that people with disabilities face in the U.S. while accessing essential care: On the one hand, the law surrounding reasonable modifications in health care is well-settled. On the other, the practical reality of U.S. health care leaves little room for individualized accommodation and self-advocating patients vulnerable to retaliation.
By Stephen Wood
The State of Massachusetts is currently reviewing a new protocol for the pre-hospital (i.e., ambulance) administration of blood products to patients with acute hemorrhagic shock.
In the pre-hospital setting, hemorrhagic shock, which is characterized by rapid blood loss that results in potentially fatal oxygen depletion of the vital organs, is traditionally managed by the administration of intravenous fluids. But there is a growing body of evidence spanning several decades that this is not beneficial and, in fact, can be harmful.
In the hospital setting, blood loss is treated by replacing blood, most commonly in the form of packed red blood cells, plasma, and platelets. There is strong data supporting the use of replacement blood products for the management of life-threatening hemorrhagic shock, specifically a reduction in all-cause mortality. Moreover, research has demonstrated the safety, efficacy, and feasibility of pre-hospital blood transfusion. Several states have implemented protocols for pre-hospital blood administration based on this supporting data. There are barriers, however, to initiating this practice at several regulatory and non-regulatory levels. The result is that access to a potentially life-saving intervention is inequitably distributed.
By Aparajita Lath
For over 100 years, policy makers and pharmaceutical manufacturers in the U.S. have debated whether the government should produce drugs and biologics.
Until now, private industry has largely won– but that may be changing, due to a recent California initiative.
By Timothy Bonis
Premiering tonight on PBS, the film Below the Belt sheds light on endometriosis by documenting four women’s experiences with the disease.
Endometriosis is a silent crisis. One in ten women have it, yet, on average, people with the condition see seven doctors before they get diagnosed. Many experience severe pain, and the disease costs the American economy $80 billion annually in lost productivity, but the standard treatments are outdated and ineffectual.
Below the Belt exposes the failures in practice and policy that have led to the poor state of endometriosis care. Medical students usually don’t learn about endometriosis in medical school, and as a result, most general practitioners can’t recognize it. The majority of gynecologists treat endometriosis with hormones — which have serious side effects and bring little relief — and an ineffective surgery called ablation. Others continue to recommend the 20th-century approach, a hysterectomy. This dismal selection of treatments reflects the state of endometriosis research; historically, the disease has received less than $10 million in research funding per year (compared to $1 billion for diabetes, an equally common condition among women).