The Regulated Pulse

Texas has some of the most restrictive medical malpractice laws in the nation while Arizona's are some of the most plaintiff-favorable (Hastings).

For instance, Texas Civil Practice and Remedies Code Section 74.153 (2003) requires patients of emergency medical care to prove that the healthcare providers acted with "willful and wanton negligence" (1). The Texas Supreme Court interprets this standard to be on the level of gross negligence which requires evidence of these two components: the provider had subjective knowledge of facts that posed extreme risk to the patient and despite that, proceeded in conscious disregard to his/her safety (Hastings). A notable exemption applies when non-emergency treatment is provided in an ER setting as many patients utilize emergency departments for primary care (Hastings). Interestingly, a 2019 section amendment added this exemption: when a healthcare provider's negligent care causes a stable patient to require emergency care (1).

Furthermore, Texas' laws complicate how fetal death claims for wrongful deaths are legally dealt with (Hastings). For example, the Texas Wrongful Death Act (Civil Practice and Remedies Code Section 71.001), expands its definition of an individual to include "An unborn child at every stage of gestation from fertilization until birth (2). In addition to this, "'Death' includes, for an individual who is an unborn child, the failure to be born alive" (2). Therefore, Texas recognizes wrongful death claims for unborn children in many notable contexts such as car accidents, assaults, and workplace injuries (Hastings). However, Section 71.003(c)(4) exempts physicians and other licensed healthcare providers from these claims "If the death directly or indirectly is caused by, associated with, arises out of, or relates to a lawful medical or health care practice or procedure of the physician or the health care provider (2).

Moreover, the state imposes a two-year time frame between when the medical malpractice occurred and case filing deadline (3). There is an exception for children under 12, as they have two years to file the case beginning at age 12.

Additionally, Texas imposes a ten-year time frame between "The date of the act or omission that gives rise to the claim" and when the health care liability claim can be filed.

Arizona Revised Statutes Section 12-542(1) similarly enacts a two-year timeframe for medical malpractice cases (12-542(1)). However, unlike Texas, Arizona does not impose a statute of repose for this area of cases (Hastings). This means that if a patient can provide evidence that he/she could not have reasonably known he/she was a victim of negligent medical care until many years later, they can still file a claim (Hastings).

However, Arizona law imposes a strict deadline of 180 days for these claims if the potential defendant is a government entity or public employee (Hastings). State law also requires plaintiffs to file a preliminary expert affidavit by a medical expert, "Detailing the provider's deviation from the standard of care and how it caused the patient's injuries" (Hastings).

Furthermore, one Arizona statute makes the state very plaintiff-favorable in comparison to most states when concerning medical malpractice cases: Article 2 Section 31 ("Article"). This statute states "No law shall be enacted in this state limiting the amount of damages to be recovered for causing the death or injury of any person ("Article"). Damages can come in the form of economic damages, emotional ones such as pain and suffering, and total recovery (Hastings).

This statute is significant because it means these cases are fully judged on their legal and factual merits, not limited by artificial jury award limitations (Hastings). However, this must be understood in the context of how Arizona juries tend to be more conservative in making large awards than those of other jurisdictions (Hastings).

Overall, Texas and Arizona are both known for having unique laws that are important in those practicing and affected by medical malpractice law (everyone).

References

Note: Due to the nature of MLA citation rules, the several statutes viewed through the Texas Constitution and Statutes website were referenced via numbers to separate otherwise identical in-text citations.

• "Article 2 Section 31 - Damages for Death or Personal Injuries :: Arizona Constitution :: Arizona Law :: US Law :: Justia." Justia U.S. Law, Justia, law.justia.com/constitution/arizona/2/31.htm. Accessed 14 July 2026.
• Hastings, Tommy. "Why Won't a Medical Malpractice Attorney Accept My Case?" Hastings Law Firm, Hastings Law Firm Medical Malpractice Lawyers, 3 May 2026, www.hastingsfirm.com/why-wont-attorney-accept-my-medical-malpractice-case/.
• Texas Constitution and Statutes, State of Texas, statutes.capitol.texas.gov/?amp=&amp=&amp=&artSec=74.153&chapter=CP.74&code=CP&tab=1. Accessed 14 July 2026.
• Texas Constitution and Statutes, State of Texas, https://statutes.capitol.texas.gov/?tab=1&code=CP&chapter=CP.71&artSec=71.001. Accessed 14 July 2026.
• Texas Constitution and Statutes, State of Texas, https://statutes.capitol.texas.gov/?tab=1&code=CP&chapter=CP.74&artSec=74.251. Accessed 14 July 2026.
• "12-542 - Injury to Person; Injury When Death Ensues; Injury to Property; Conversion of Property; Forcible Entry and Forcible Detainer; Two Year Limitation." Arizona State Legislature, Arizona State Legislature, www.azleg.gov/ars/12/00542.htm. Accessed 14 July 2026.

I had the privilege of interviewing Mrs. Taylor Revenew, A CDC attorney, a few weeks ago and wanted to share some highlights from our three-hour conversation.

Mrs. Revenew had an unconventional pre-law path– law school wasn't on her mind until early in her senior year of undergrad. As a senior at the University of Georgia (UGA), Mrs. Revenew was only a year out from graduating with a B.S. in Health Promotion, but she wasn't entirely certain what her career path was going to look like.

Curious about her post-undergrad options, she reached out to a current UGA Law student from her hometown to learn more about attending law school. That conversation proved pivotal, and it sparked a realization that healthcare law was going to be the next step in her educational journey.

She applied early through the UGA Scholars Program; a program that high-achieving UGA undergraduates can pursue to secure admission to the top 20 law school. It allows undergraduates to apply without taking the LSAT, and it requires a minimum 3.5 GPA and have scored at or above the 85th percentile nationally on either the SAT or ACT at the time of administration ("Scholars").

She was accepted to UGA Law, and committed to her state flagship institution, enjoying a seamless transition between undergrad and graduate studies. This became useful while navigating the intense workload and adjustment that the first semester of law school requires.

Throughout law school, in addition to being president of the UGA Health Law Society, she pursued various internships, externships, and summer associate opportunities. For instance, the summer after her first year of law school (1L), she was a legal and bioethics intern at Memorial Health University Medical Center in Savannah, Georgia. Her 2L spring semester, she began her journey with the Centers for Disease Control and Prevention Office of the General Counsel (CDC OGC) as a legal extern. The summer following her 2L year, Mrs. Revenew was a summer associate at a large medical malpractice defense firm in Atlanta, GA. Additionally, she spent a semester as a legal extern in the Medicaid Fraud Control Unit of the State of Georgia Office of the Attorney General.

After graduating from law school, Mrs. Revenew worked as a medical malpractice defense attorney for nearly three years. She enjoyed getting her hands dirty in the extensive medical records, speaking to medical professionals to gain expert perspective, analyzing the weaknesses and strengths of a case, and taking complex medical cases and breaking them down for a jury to understand. She recalled discovering that medical malpractice attorneys on the plaintiff side reject around 98% of the potential cases they review. This is due to the high cost of pursuing medical malpractice cases– it typically runs firms 20-300k nationally depending on the complexity of the medical malpractice case (Hastings). Especially for firms that get paid based on contingency, this means that firms on the plaintiff side will typically not take a case unless they believe the following four factors are fulfilled: "That a doctor-patient relationship existed, that the provider's care fell below the accepted standard of care, that this failure directly caused the injury, and that the injury resulted in quantifiable damages" (Hastings).

During her time in private practice, Mrs. Revenew also became acquainted with the tedious nature of billables: an attorney norm of having to take meticulous notes of how much time one spends on specific work or tasks for various clients' cases. Firms typically track time in six-minute increments, and keeping track of these records is essential for firms to get paid for their work.

While working in private practice, Mrs. Revenew was contacted by an attorney at CDC OGC that she worked with during her externship, and she was informed of an opening for an attorney within CDC OGC. As it was always her dream to make her way back to CDC OGC, she excitedly applied for and was offered the position. In her work at OGC, Mrs. Revenew primarily advises the Division of Regulatory Science and Compliance (DRSC), which administers three programs: the Federal Select Agent Program, the Import Permit Program, and the U.S. National Authority for the Containment of Poliovirus. She also recently began advising the National Center on Birth Defects and Developmental Disabilities (NCBDDD). DRSC works to ensure that scientific research conducted in laboratories, especially on select agents and toxins, is conducted as safely and securely as possible.

The Federal Select Agent Program (FSAP) is managed jointly by DRSC and the Animal and Plant Health Inspection Service's Division of Agricultural Select Agents and Toxins (part of USDA) ("About Us"). FSAP oversees the possession, use, and transfer of select agents and toxins. DRSC regulates the agents and toxins that can cause disease in humans, while DASAT regulates those that can cause disease in animals and plants. Agents that have the potential to pose a threat to both public health and to animal health or products are regulated by both agencies. ("About Us"). A few examples of select agents and toxins are monkeypox virus, severe acute respiratory syndrome coronavirus (SARS-CoV-CoV), and ebolavirus ("Part 73").

DRSC also administers the Import Permit Program (IPP). This program regulates the importation of infectious biological materials that can cause disease in humans to prevent the introduction, transmission, or spread of communicable disease from foreign countries into and throughout the U.S. ("About Import"). Most commonly, permits are issued to laboratory facilities at government agencies, universities, and private and commercial laboratories. In 2024, IPP conducted 101 Import Permit inspections to ensure that the appropriate biosafety measures were in place. ("About Import").

Lastly, DRSC administers the U.S. National Authority for Containment of Poliovirus (NAC). The U.S. Department of Health and Human Services (HHS) designated the NAC in January 2018 ("U.S."). NAC works to reduce the risk of polioviruses being released from where they are worked with or stored ("U.S.").

Mrs. Revenew has greatly enjoyed her role with CDC OGC, where she appreciates that every day brings on new challenges and constantly evolving science and legal work. Her experience with CDC OGC contrasts her prior work in medical malpractice litigation, where cases generally followed a structured arc of discovery, depositions, and trial preparation.

In my opinion, one of the coolest parts about her work at the CDC as an extern and attorney has been the unique opportunity to work on unique legal issues surrounding individuals who have been exposed to infectious diseases, such as COVID-19 and most recently, hantavirus.

Additionally, her Health Promotion coursework, including cadaver labs, anatomy, physiology, and biology, proved valuable in both her medical malpractice work, where she had to learn and understand complex medical procedures, and in her current role advising CDC scientists on the intricacies of the select agent and toxin regulations.

Overall, it was an amazing experience getting to speak with Mrs. Revenew and gain insight on her experiences in the public and private sectors of healthcare law as well as at UGA Law.

References

• "About Import Permit Program | Import Permit Program | CDC." CDC Import Permit Program, U.S. Centers for Disease Control and Prevention, 20 Jan. 2026, www.cdc.gov/import-permit-program/php/about/index.html.
• "About Us | Federal Select Agent Program." CDC USDA Federal Select Agent Program, Federal Select Agent Program, www.selectagents.gov/overview/index.htm. Accessed 15 July 2026.
• "ECFR :: 42 CFR 73.3 -- Hhs Select Agents and Toxins." National Archives Code of Federal Regulations, Office of the Federal Register, www.ecfr.gov/current/title-42/chapter-I/subchapter-F/part-73/section-73.3. Accessed 15 July 2026.
• Hastings, Tommy. "Why Won't a Medical Malpractice Attorney Accept My Case?" Hastings Law Firm, Hastings Law Firm Medical Malpractice Lawyers, 3 May 2026, www.hastingsfirm.com/why-wont-attorney-accept-my-medical-malpractice-case/.
• "Scholars Admission Process - UGA School of Law." University of Georgia School of Law, University of Georgia, www.law.uga.edu/scholars-admission-process. Accessed 15 July 2026.
• "U.S. Poliovirus Containment | U.S. National Authority for Containment of Poliovirus | CDC." CDC U.S. National Authority for Containment of Poliovirus, U.S. Centers for Disease Control and Prevention, 15 Oct. 2024, www.cdc.gov/poliovirus-containment/php/us-containment/index.html.

This blog demystifies the legal frameworks and ethical guardrails shaping the future of healthcare technology. It analyzes the shifting landscape of healthtech, the systemic structures governing it, and the healthcare law and policy choices shaping how we heal—bridging the gap between complex academic research and practical industry impact.

Innovation moves fast, but systemic frameworks must be built intentionally. This space focuses on where healthcare stands today and where we go from here, highlighting critical ethical guidelines alongside interviews with the innovators and leaders driving progress on the ground.

Subscribe to the newsletter to stay updated on upcoming research deep-dives, book reviews, and interviews.

Welcome to the pulse.

“It is estimated that there are 272 million international migrants today, about 3.5 percent of the world’s population… If international migrants made up one country today, they would be the fifth largest country in the world after China, India, the United States, and Indonesia.”

— Migration and Health, pg. 4

People migrate for reasons as varied as seeking greater economic opportunities, escaping authoritarian regimes and war, to obtain higher education, to running from religious persecution.

The 1946 Constitution of the World Health Organization (WHO) states “The right to the enjoyment of the highest attainable standard of physical and mental health is a fundamental part of our human rights" (54). However, this principle lies in direct contrast to the realities millions of migrants face. In many countries, asylum seekers are primarily entitled to emergency care, as primary care access is limited (55). Furthermore, 12/30 European countries provided limited health care entitlements to asylum-seeking children with Germany standing out as having the most restrictive policy for migrant children in the continent (55).

The UN High Commissioner for Refugees (UNHCR) provides the strongest legal and institutional frameworks for the international law of refugees; however, they have no enforcing power which means the human rights migrants have are primarily up to the current government and existing policies of a nation.

This has led to a wide array of policies and processes concerning the treatment and care of migrants. Migrants face heightened health care needs because of the dangerous routes they often take to secure better futures, and because of the often subpar access to high-quality health care in their homelands.

As climate change contributes to record-high average temperatures and natural disasters, the World Bank estimates that more than 117 million people will need to migrate within their countries by 2050 in addition to the 20 million a year that are displaced annually due to extreme rapid-onset climate events (70-71). The poorest citizens of the poorest countries will face the most severe impacts as they are more likely to depend on climate-dependent industries such as agriculture and fishing.

Migrants are more likely to get Hepatitis B and C, HIV, STIs, tuberculosis, malaria, and COVID-19 (92-95). Because of a lack of screening policies and effort taken to ensure adequate migrant health, there is a great deal of needless suffering that migrants face for diseases that are curable and have widely available treatment options (93).

Moreover, migrant communities face heightened risks for undernutrition and being overweight or obese (118). Undernutrition contributes to much of the 45% nutrition-related risks for global child mortality (118).

Interestingly, older migrants, especially those that have a disability, are more likely to migrate than those that are younger than 65 and able-bodied (147). This highlights the need for nations to invest more in migrant health, as many have greater health needs while being physically weaker. In addition to this, disabled people, as migrants, have limited rights to employment and welfare in their host nations, and “Tend to be ignored in migration policy and interventions” revealing a troubling reality (266).

Another marginalized group within migrant communities is that of children. One-eighth of international migrants are children (36 million) and they account for half of all refugees as well as 42% of those that are forcibly displaced (149). Additionally, even after being settled in their host nations, children still face increased risk of violence and exploitation (151). Moreover, the circumstances as to why and how they were able to be resettled can affect their psychomotor development, immune function, and long-term physical and mental health (151). Furthermore, in overcrowded European accommodation facilities, Hepatitis A outbreaks are highly prevalent for those under 18 (153). Over time, children are better able to recover from the high rates of depression and PTSD common in migrants, but there are still barriers in them accessing mental health support (157).

However, technology can be harnessed to advance migrant health– and is being harnessed through UN Sustainable Development Goal SDG-9C which aims to provide universal, affordable Internet in the least developed nations (LDNs) by 2020 (179-180). This goal was created knowing that only 19% of an LDNs population used the internet compared to 87% in high-income countries (180). This is being done through the development of digital translation and communication tools that are able to positively impact the limitations migrants face in receiving health care such as cost, trust, time, and availability (180-181). Two other digital tools that are addressing migrant health inequities are Tarjimly, an app that connects migrants to volunteer translators, and the Health Resources Available Mapping System (WHO-sponsored) that assesses medical resource availability for emergency care in 21 countries such as Syria, Sudan, Yemen, and Bangladesh (181). Furthermore, the United Nations developed an electronic health record system to serve Palestinian refugees seeking primary care (181). It includes features such as an appointment system, medicine analysis tools, and auto-populated prescription forms based on clinical guidelines (181).

Clean water accessibility is also essential to avoiding infectious disease outbreaks in migrant populations (181). For this, the UNHCR has developed a tool to monitor water truck deliveries using a networked ultrasonic water-level sensor series (181).

Here are more examples of migrant-tailored healthcare technologies being deployed:

• Step-by-Step, a WHO-developed mental health resource that trains users in behavioral activation, psychoeducation, stress management, positive self-talk, and relapse intervention (182).
• Multi-Adaptive Psychological Screening Software (MAPSS) and Open Data Toolkit (ODK) that aid in self-reporting, collecting, and assessing mental health symptoms (182).
• The HADStress screening tool used alongside telepsychiatry that allows for PTSD screening based on these symptoms: headaches, appetite changes, sleep changes, and dizziness (182).

To switch gears, in September 2019, Bangladesh shut off internet and telephone access in Cox’s Bazaar (city), affecting the Rohingya and host community refugee camps on the grounds of preserving security and addressing rising crime (183-184). In Bangladesh, a national registration number or a passport is required to obtain a phone number, presenting ethics concerns as the COVID-19 pandemic began (ban ended Aug 2020 after facing international pressure) (184).

Another ethical concern for migrants related to data privacy: “Often, the willful and consensual submission of biometric or personal data by refugees is later used for surveillance, detention, and deportation” (184). Two examples of this would be in the U.S. Deferred Action for Childhood Arrivals (DACA) program, and in the deportation of migrants from France in 2006 (184).

Nationalism and discrimination against migrants plays a central role in many’s beliefs that migrants are not obligated to the rights of citizens, including that of access to medical care. In fact, many states have responded to increasing migration by reducing migrant health benefits– a decision causing many to face severe, preventable health issues that may affect them long-term. Access to quality health care is essential as Norman Daniels, Harvard professor and bioethicist argues that “health is of special moral importance because it contributes to the range of opportunities open to use” (197-198).

Furthermore, it goes without saying that the traumatizing and challenging situations migrants face affect their health more than access to medical care can in many cases. One infamous example lies in when the U.S. separated young migrant children from their parents and put them in cages.

Immigration status is now recognized as a negative determinant of health because of the vulnerabilities in immigration law, fear of deportation, and legal barriers in accessing health care they face (198). Especially considering that immigrants account for a considerable percentage of the healthcare workforce of wealthy nations such as the United States (39% of physicians and 17% of nurses), and the United Kingdom (28% of physicians), it is vitally important to expand health care to our foreign-born populations (199).

To conclude, it is essential that migrants have free access to primary health care with a focus on addressing the needs of more vulnerable populations such as pregnant women and children (295). While international efforts such as the 1951 Convention Relating to the Status of Refugees and the 1967 Protocol are important steps in progressing migrant human rights on a global scale, bettering local legal structures are equally as important, according to Migration and Health (42; 378-379).

Access to quality healthcare is a human right, as good health is essential to the human realization of potential and success.

Migrants deserve better.

References

• Galea, S., Ettman, C. K., & Zaman, M. H. (Eds.). (2022). Migration and Health. University of Chicago Press.
• Harvard T. H. Chan School of Public Health. (n.d.). Norman Daniels. Harvard T. H. Chan School of Public Health. https://hsph.harvard.edu/profile/norman-daniels/

“Love and compassion are necessities, not luxuries. Without them, humanity cannot survive.”

— Dalai Lama (Trzeciak and Mazzarelli xi)

Compassionomics presents an enormous amount of scientific data reeling in the literal reality and significance of this Dalai Lama quote. The decline in how compassion is presented from clinicians to patients has led to dozens of studies confirming a concerning reality: patients suffer when they are not treated compassionately, regardless of if clinical and hospital administrative protocols are followed.

A Harvard Medical School study survey revealed stark statistics: nearly half of Americans and physicians believe that the health care system is not compassionate (6). The same percentage of Americans also believed health care providers are not compassionate (Trzeciak and Mazzarelli 6). However, when physicians were asked if providers were, three-fourths said they were (6).

There was a greater consensus between patients and their providers in another survey that showed that 63% of healthcare providers “Have observed a decline in compassionate care over the past five years” (6).

This decline has proven quite costly for patients— in the increase of medical errors, costs incurred for patient care, and in the reduced efficacy of treatment plans.

When comparing the 891 diabetic patient outcomes of high and low compassion physicians (29 total), the results were striking: patients of highly compassionate physicians were 80% more likely to have optimal blood sugar control (82). U.S. researchers then repeated this study in Italy, where it could be replicated on an enormous scale (242 physicians and nearly 21k patients), and revealed another astounding fact: patients of high compassion physicians had a 41% lower chance of having serious diabetes complications (82-83).

In a 1960s study by Harvard Medical School researchers, similarly strong results of the power of compassionate care were shown. Patients that had a pre-surgery appointment with the anesthesiologist to build rapport and ease anxieties had “More than double the effect of administering pentobarbital,” a powerful anesthetic (62). Their second experiment showed that those who had this pre-surgery meeting needed 50% less opiate pain medication post-surgery (62).

If these results were published in acclaimed medical journals such as The New England Journal of Medicine and JAMA at the time, why did they not revolutionize medical school education, residency programs, and the fabric for how patient-provider relationships were navigated for decades to come? Why has the level of perceived compassion by providers greatly declined since the 60s, especially in the wide scale adoption of electronic health records?

The authors of Compassionomics argue that it is because, prior to the release of this 2019 book, the findings of hundreds of scientific articles on this topic were not connected to one another, building on each other like how medicine was in its various specialties. Although over six years has passed since the book’s release, medical care in this country still hasn’t been revolutionized– but by educating ourselves and spreading the word, we pave the way towards a standard level of care that reflects scientific findings, and what patients truly deserve.

A study that looked at how 136 Level 1 trauma patients responded to their subjective assessments of their own recovery six weeks and one year following hospital discharge produced an incredible finding: “The odds of a patient-reported good outcome were four times higher when the physician was rated as having high compassion” (Trzeciak and Mazzarelli 63). Furthermore, a Mass General Hospital study showed that “Patients randomly assigned to receive compassionate palliative care actually survived, on average, 30 percent longer” (68).

A University of Haifa in Israel study even found compelling evidence for the power of hand-holding done by a loved one: volunteers’ pain rating from a painful heat stimulus declined by 50% (70-71).

In a Carnegie Mellon University study, even the number of hugs received by volunteers facing common cold symptoms contributed to 32% of the protective effect that social support had against infection (87).

Moreover, when an oncologist showed compassion in consultations with breast cancer survivors that they had cancer again, they reported significantly less anxiety than those in the control group that had just been presented the facts (108-109).

Over and over, the data shows that when physicians are compassionate towards patients, patients trust them more, view them as more competent (the research shows this is scientifically backed), are more compliant with treatment plans, feel less alone, and have more hope.

But, in a system where patients get to see providers for 10-15 minutes, and for most of that they’re staring at a screen, thinking about how other patients are waiting to see them, where does building a more compassionate clinical team start?

It starts with addressing the hidden curriculum of medical schools so it can instill in the next generation of physicians a better way of healing.

The hidden curriculum describes the habits and unsaid way of doing things medical students pick up on practicing physicians– absorbing what it means to be a competent physician. In order to do that, compassion training should be mandatory for all clinicians. It seems unnecessary and obvious that in helping professions, compassion should and is shown by most everyone. But, it’s not. When you’re engaging in patient care 40 hrs a week for years on end, you inevitably become desensitized to medical aspects of your environment. But, more than that, you lose touch with how devastating your daily tasks are to the average person. For instance, being in the emergency room, getting diagnosed with a grave illness, or being told a loved one is near the end are things patients will remember and be affected by for years, if not the rest of their life. The way physicians talk to patients about the nature of their health issues greatly affects their understanding of their medical reality and what that means for other aspects of their lives.

But, in the compassion crisis, we’re facing another alarming crisis– one of unprecedented physician burnout. 50% of U.S. physicians are suffering from burnout (288). A Mayo Clinic survey of nearly seven thousand physicians found that 35% of doctors are so burnt out that they show high levels of depersonalization, a trait that makes providing compassionate care difficult (8). The same percentage was found in a study that looked at over a thousand European family physicians– it’s not a U.S.-only problem.

One thing to note though is that burn out starts early. A University of Pennsylvania study found that during the first year of residency, student doctors experienced a sharp increase in depression with one-third of students having experienced it (8-9).

Practicing medicine is a mentally and emotionally taxing profession which is why the rate of severe mental health crises is nearly double than that of the general population, and the highest rate among all professions (289-290). In addition to this, almost 40% of U.S. physicians have symptoms of depression, compelling 6% of them to experience life-threatening mental health emergencies (290).

It is vitally important for healthcare systems to encourage healthy work cultures, ones in which clinicians are able to foster strong relationships with colleagues, proving as protective factors for good mental health.

Even here, compassion is the answer. “Research shows that compassion for others can be a coping strategy to overcome personal distress and strengthen one’s own resilience” (300-301). Here lies the difference between empathy and compassion. When we feel empathy, the parts of our brain that light up when we are in pain ourselves light up, but when we feel compassion (act on our empathy), our reward pathway lights up.

In fact, “Neuroscience research shows that the most potent activator of brain circuits involved in human happiness is actually… compassion” (304). Humans have been hard-wired to be compassionate towards others for millenia as an ancient survival strategy.

And as research continues to show modern-day, it is still a survival strategy. Not only do physicians show decreased symptoms of burnout when they lean-in emotionally with their patients, but they report better well-being, promoted by how the “helper’s high” increased feelings of calmness, feelings of self-worth, and boosts “Circulating neuromodulators (such as the hormone oxytocin) which not only buffers stress, but also triggers positive emotions (such as feelings of calm and closeness)” (302-303).

An interesting study done on Chief Medical Officers (CMOs) in Harvard Business Review confirms these findings. While 69% of them reported “severe,” “very severe,” or “worst possible” stress levels, they had surprisingly low levels of burn out (313). 91% of these CMOs actively practiced compassion in their careers– protecting them physically, mentally, and emotionally from the negative effects that stress and burnout can have (313). That was their secret to being resilient in their intense, demanding careers.

But the benefits of more compassionate care extends to the finances of healthcare organizations: “Hospitals that are rated highly on their patient experience scores are also higher performing hospitals financially” (219). For instance, those that were rated “excellent” by patients had 2.9% higher average margins than low performers (219). A 4.7% margin vs a 1.8% one is the difference between being able to keep doors open or not for many hospitals, highlighting the nonnegotiable need to provide positive patient experiences (220). This is especially relevant as the federal government partially determines how they fund healthcare organizations based on how they score on a mandated patient experience survey (HCAHPS) (218-219).

But, what do patients value in their healthcare experiences?

One Harris Poll showed that patients valued being listened carefully and being easy to talk to way more than the prestige of where the physician was trained, their experience treating patients with their medical conditions, and even if they spoke their native language (222-223). This shows how compassion transcends culture, language, and belief systems.

Kenneth Schwartz, a health lawyer that received an advanced lung cancer diagnosis at 40 with no smoking history, and a wife and two-year-old son, shared the profound impact his clinicians had on him, remarking “compassion makes ‘the unbearable bearable’” (120-121). One particular physician scientist, Dr. Kurt Isselbacher took a great interest in helping him navigate which experimental therapy to choose. “Schwartz wrote this about him: ‘I was especially affected because such hopefulness was not coming from a faith healer, but a distinguished researcher’” (121). Later on, he remarked how touched he was even by the small empathetic gestures his caregivers gave him, saying: “In some ways, these quiet acts of humanity have given more healing than the high-dose radiation and chemotherapy that hold the hope of a cure” (122).

Although Schwartz passed away less than a year after his diagnosis, his legacy continues through the “Schwartz Rounds” that occur in lecture halls and conference rooms of hospitals nationwide. During these regularly scheduled rounds, healthcare providers openly discuss the socio-emotional issues they face in caring for patients and their families, finding community and support in sharing with co-workers that understand what they’re going through (122). Over 550 hospitals and health systems across the globe participate in Schwartz rounds because of the support made possible by the Schwartz Center for Compassionate Healthcare. The Center supports over 200k healthcare professionals yearly through education, resources, and regularly held conferences (123).

Unlocking the door to a more compassionate health care experience for patients doesn’t require a lot of time either. A University of Wisconsin-Madison study showed that a two-week compassion training course showed fMRI changes signalling greater ability to be compassionate (237). Furthermore, a Mass General psychiatrist and her colleagues developed three 60-minute modules rooted in the neuroscientific underpinnings of how to harness human connection in clinical settings (275). In a randomized controlled trial, “The physicians who were randomized to empathy training had a statistically significant rise in positive patient ratings of physician compassion” (276).

Compassion training works, helping to decrease medical errors, improve the mental health of clinicians and patients alike, and improves the bottom line. More than that, it promotes the very humanity and care our world desperately needs.

There is a worldwide loneliness epidemic, so much so that, in 2018, the U.K. government appointed a Minister of Loneliness (51). Heart attack patients that lacked emotional support had three times higher odds of death than those who did (50). Moreover, the Harvard Study of Adult Development that began in 1938 and is still ongoing gathered this revealing insight: “The people who were the most satisfied in their relationships at age 50 were the healthiest at age 80” (51-52).

When people are at as vulnerable and emotionally-taxing a point in their lives as being admitted to the hospital due to fatal health issues, they need that point of human connection to feel less alone, that someone cares. Patients pay attention to how they or their loved ones are treated and talked about– that “53-year-old alcoholic with liver failure” is someone’s brother, husband, father, and uncle, and it can be a depressing sign to patients as to just how depersonalized and disconnected many physicians are to the people they closely interact with.

“Researchers found that 56 percent of physicians believe they do not have time to treat patients with compassion.”

— Compassionomics, 249

Research done by Northwestern University concluded 31.5 seconds was all it took for a physician to demonstrably show compassion in their interactions with patients as well as their responses (254). Physicians' fears of how being compassionate might take up too much time for them to stay on track with schedules or open up a Pandora’s box of patients delving into their emotional issues was proven to be unfounded.

A Johns Hopkins University study found that “Compassionate care not only reduced patients’ emotional distress, but the effects also persisted up to six months after the clinic visit” (256).

Compassion training includes “Training in communication skills, recognition of emotional cues, increasing eye contact, sitting down (versus standing up), goal setting, shared decision-making, and avoiding interrupting the patient,” components that benefit patients, providers, healthcare systems, and even the government and insurance companies who have lower bills to pay from physicians that truly listen and order less diagnostic testing (277).

Additionally, a perceived lack of caring rather than negligence is what pushes most families to litigate (244). When patients trust their physicians, they believe them to be more competent and well-intentioned, traits that mean the difference between deciding to file a medical malpractice suit– even if the physician made costly errors (242-246).

The science is in on clinician-led compassion in healthcare settings, and I prescribe three doses of compassion training modules (60 mins each) to all clinicians worldwide.

From nursing aides at nursing homes to esteemed specialists in academic hospitals, we could all benefit from learning about the science of human compassion. To be compassionate is to be human and treat one another with the humanity we desperately need to feel whole in a world that is increasingly connected and showing unprecedented mental health issues such as loneliness at the same time.

“Before one can learn to be more compassionate, there is a vital first step. First, one must believe that every patient deserves compassion. Every single one.”

— Compassionomics, 285

References

• Trzeciak, Stephen, and Anthony Mazzarelli. Compassionomics: The Revolutionary Scientific Evidence That Caring Makes a Difference. Huron Consulting Services LLC, 2019.

“Doctors used to be empathic,” he told me, “but the system has sucked the soul out of everybody.”

— A Giant Leap, page 186

The slow erosion of the patient-doctor relationship in the United States the past few decades has been caused by a mixture of electronic health record (EHR) implementation, the shortage of healthcare providers, and the nature of how our healthcare system is funded– being billed per service. The ideal of having a lifelong relationship with your primary care provider is not the reality most of us share.

This erosion has reduced trust in this relationship which serves two distinct purposes as artificial intelligence technologies are implemented across healthcare– it makes it easier for patients to trust in newly implemented AI tools due to the lower level of trust in the current system and harder because they may question the tools’ accuracy and the motives behind institutional adoption (Wachter 50).

Patients may think AI, as it is used in other sectors, is a way to decrease labor costs and increase margins.

But AI can, and is doing both, all while performing at higher levels of accuracy than providers in some instances. For instance, when faced with the “famously vexing cases” of The New England Journal of Medicine, generative AI was on par with the best faculty diagnosticians (Wachter xix).

The doctor-author remarks on this insight with the humorous remark: “Was this how it felt to be a skilled portrait painter in the late nineteenth century, when photography emerged as a much faster and cheaper way to capture people’s likenesses?”

Although we aren’t quite there yet with healthcare AI, in our lifetimes, it is highly probable that the abilities of artificial intelligence will transform the healthcare landscape.

Besides, it’s not like humans are void of making millions of serious medical mistakes a year. As Dr. Watcher points out, “Nearly one million Americans are severely harmed or killed by medical mistakes every year” (xxi). On top of that, one-of-three dollars spent in healthcare are spent on administrative costs– suddenly, incorporating AI to ease administrative costs, and use in clinical practice, as a doctor-in-the-loop is utilized, doesn't seem like such a bad idea.

Actually, it seems like the shake-up that our healthcare system desperately needs.

But, how does the regulatory landscape look like for these technologies that advance every day?

As it's called in Silicon Valley slang, let’s double click on that.

As the Trump administration scales back on the federal government's regulatory arm, FDA commissioner Rob Califf argues “The agency needs more resources to carry out its functions, particularly as new AI tools become ubiquitous features of clinical care” (Watcher 234). Healthcare regulation has always walked a tight-rope: too much regulation and you stifle innovation, too little and you endanger lives. As we give technology greater responsibilities, we must reckon with the risks this may bring.

Generative AI can hallucinate one minute and provide flawless specified output the next, and then act like it “forgot” the specificities of prior conversations the next. Anyone that has played around with Gen AI enough can tell you that much. So, when it comes to the lives of ourselves and our loved ones, how does the dance between biomedical ethics and technological healthcare innovation go? Is it a graceful one?

As long as there’s a human in the loop, many of us would say, given current technological capabilities and for the foreseeable future.

But, there’s a few issues with that; namely, humans are not very good at being vigilant against reliable technologies and de-skilling would likely occur as they become more dependent on these technologies.

One poignant example lies in the 2009 Air France Flight 447 crash off the coast of Brazil. As the plane’s airspeed sensors failed, the pilot and copilot were on their own to guide the plane through a strong gust of wind. An event that wouldn't have typically been anything special became the scene of a fatal incident, as 228 people plunged into the Atlantic Ocean.

In the words of the late aviation journalist William Langewiesche, “We are locked into a spiral in which poor human performance begets automation, which worsens human performance, which begets increasing automation” (Watcher 87).

But before you write off this troubling incident as the crime of two bloody hands, and not of human nature, take a look at this study.

“In a dramatic 1998 study, research psychologist Kathleen Mosier placed twenty-one experienced commercial pilots in a flight simulator. During the flight, the pilots were shown a warning light pointing to a potential fire in one of the engines. The twist was that several other indicators showed no signs of a fire, making it overwhelmingly likely that this was a false alarm. Nevertheless, all twenty-one of the pilots shown the warning light decided to shut down the engine, a dangerous move. In subsequent interviews, two-thirds of the pilots reported having seen at least one other indicator confirming the fire (several recalled seeing more than one), despite the fact that there were no such cues, a phenomenon Mosier dubbed “phantom memory.” Our trust in technology can become so powerful that we ignore our own senses, creating a special problem for the human in the loop” (Watcher 88).

Hard to read, right? Especially considering this aspect of human psychology likely has not dramatically shifted since the late 90s.

Another reason why the human-in-the-loop idea may not be as strong as we think: sometimes the human makes it worse, particularly in clinical diagnostic reasoning.

In a study run by Stanford informatics expert Jonathan Chen, “Physicians were given cases to review; half (the control group) were allowed to use their usual resources, and half were given access to GPT-4. The control group ended up with a score of 74 percent on a measure of diagnostic reasoning, whereas the group with access to GPT-4 scored 76 percent– a trivial improvement. The shocker was that when GPT-4 was given the cases to review by itself, without any input from the physicians, it scored 92 percent” (Watcher 90).

There are a few alternative solutions to keeping a more direct human-AI partnership while keeping the nature of us in mind, including having the doctor to be the first to weigh in and having AI systems periodically give false diagnoses, chart summaries, or recommendations (Watcher 91). However, this latter strategy puts an essential glass ceiling on healthcare AI capabilities. Isn’t the whole point of the man-machine collaboration to advance beyond capabilities man can exceed alone, to the furthest achievable point to benefit humanity?

There is no right answer to many of these kinds of questions when we involve artificial intelligence. But, as AI revolutionizes healthcare, how do we train the next generation of doctors?

With less rote memorization, and a greater skillset in how to use AI tools wisely. Physicians spend 45-65% of their work day staring at a screen, and as AI advances, they will be better able to be caring towards patients they see for 10-15 minute windows. The pace of AI advancement has surpassed that of medical schools curriculum, and something more important– federal regulation.

When Dr. Watcher met with the United States’ chief health AI official in 2024, a newly established position itself, he asked a question that is quite revealing of the healthcare AI federal regulatory landscape.

“‘If we throw a wrapper on GPT-4 and it gives me diagnostic advice when I’m seeing a patient– but I, as a physician, still need to sign off at the end– where does that live in the regulatory framework?”’

His response: “‘Dunno yet’” (Watcher 240).

Although A Giant Leap was released in February of 2026, healthcare AI regulation is still a gray area in many ways, and will continue to be as AI grows in a direction that will force citizens and lawmakers alike to think about technology ethics in this important sector.

As former national coordination for health IT David Blumenthal and Google’s chief of regulatory affairs Bakul Patel argued in writing, “How can the government regulate a single device that could be applied to any conceivable clinical problem, whose knowledge base dwarfs any human’s and changes constantly, whose methods of reaching conclusions are beyond the comprehension even of its creators, and whose computing capacity grows by leaps and bounds?” (Watcher 240-241).

Situated in the center of this debate is the Coalition for Health AI (CHAI) that was founded in 2021 and has over three thousand member organizations including tech giants, academic hospitals, AI start-ups, and government agencies. Most notably, CHAI runs a national network of assurance labs primarily at academic health systems that test and validate healthcare AI tools and provides research-based guidance to promote responsible AI use (Watcher 243). It’s an important organization that encourages transparency and encourages safe AI use in a competitive, yet incredibly important industry: healthcare.

As the AI race moves full steam ahead, it is organizations like CHAI that help fill a regulatory void that the government could not. CHAI makes the healthcare AI industry one step ahead because of the intense and intentional collaboration it fosters, and gives me hope despite the risks and unpredictable issues that come with a revolution in healthcare.

As Mayo Clinic CEO and author Dr. Watcher remarked, in this space, “The risks of going too slowly exceed the risks of going too fast” (258). AI will disrupt the healthcare industry– but not before lawyers, consultants, and accountants feel the heat (Watcher 262).

Healthcare’s primary function is to maximize human health, and if wise AI implementation can assist with that, then let it be– Epic’s monopolistic and anticompetitive practices be damned (Watcher 214-222).

References

• “Responsible AI Guidance.” CHAI, Coalition for Health AI, Inc, www.chai.org/workgroup/responsible-ai. Accessed 10 June 2026.
• Wachter, Robert. A Giant Leap: How AI Is Transforming Healthcare and What That Means for Our Future. Portfolio / Penguin, an Imprint of Penguin Random House LLC, 2026.

Upon a 2023 Executive Order on “safe, secure, and trustworthy” AI, a national investigation into how AI affects people with disabilities was launched (Gilbert 2-3). AI could support independence through AI-powered captioning, smart navigation tools, and accessible smart home technology.

However, it could also pose serious risks:

• Hiring algorithms screening out applicants who are disabled
• Education tools misjudging how students who are disabled learn
• Public benefits systems wrongly denying support
• Healthcare AI failing to account for disability-specific needs
• Biometric tech that can’t identify faces or gestures of people with disabilities (Gilbert 3).

The Access Board recommended transparency, inclusive datasets, and including people with disabilities at every stage of AI development to ensure equity (Gilbert 3).

The definition of disability according to the Inclusive Design Research centre (IDRC) is aligned with the social and design models of disability: disability is socially constructed and relational, “Rather than as a binary property (disability or not) that adheres to an individual. Disability is “a mismatch between the needs of the individual and the design of the product, system or service. With this framing, disability can be experienced by anyone excluded by the design” (Costanza- Chock 53).

The tables below describe how inclusive design features can directly benefit those with various disabilities and the differing roles of AI and humans in creating accessible design features (Gilbert 23; 122).

A recommended approach to creating accessible design is for design teams to engage in community co-design, involving disabled users in the design process. This has been shown to result in “45% better usability scores and 38% fewer accessibility violations compared to traditional design-then-test approaches (Teeters 156-157).

An interesting example of an AI-integrated assistive technology that works with community members and people with disabilities would be the Be My Eyes app. The “AI feature enables blind or low vision users to take photos and receive detailed text descriptions, offering capabilities beyond basic object identification, including text recognition, mood interpretation, and image quality feedback with suggestions for retaking unclear photos. If the AI-generated description proves inadequate, users can request additional information or connect with a human volunteer for further assistance (Gilbert 183).

AI is also becoming a useful partner in UX research, being able to flag accessibility violations, track user flows, and provide automated insights. However, human researchers currently still remain essential in addressing the subtle nuances of user intent, emotions, and cultural context– all important in designing accessible UI/UX design.

A way that organizations in the process of creating more inclusive web design have an accessibility statement that describes their current progress and provides a way for users too report issues. An Equally Alternative Access Plan is also an effective strategy as it creates alternative ways website information and its offered tasks can be accessed to those with disabilities.

Why should organizations care about accessible design?

Designing inclusively means designing for human dignity. It means creating a world that decreases disability as it is defined by the social and design model (Gilbert 6). It decreases systemic barriers and friction those with disabilities face between their identity as users and their environments.

Furthermore, over 1 billion people live with a disability (Gilbert 8). That is $490 billion in disposable income of working-age adults. Increasingly, accessibility is a requirement to business success, as consumers have increasingly valued accessibility and inclusion in who they buy from.

Inclusive Design for a Digital World provides some fast facts on this:

• Nearly 70% of consumers say a brand’s diversity, equity, and inclusion (DEI) values influence where they shop.
• 45% say they’ll even pay more for products from brands that reflect those values.
• Almost 90% of digital professionals say that accessibility investments have improved overall user experience for all users (Gilbert 8).

In addition to this, a 2024 study from MIT’s Computer Science and Artificial Intelligence Laboratory “Found that 73% of breakthrough interface innovations originated from accessibility requirements before being adopted by mainstream users (Teeters 155). Two notable examples are email and voice-to-speech technology that were born out of the disabled community’s need for alternative communication methods.

Jamaal Davis, an Inclusive UX Expert, also uses these two words to get the attention of companies intending to build fast and exclude many: liability and revenue (Teeters 164; 166).

Title III of the American Disabilities Act (1990) requires that businesses open to the public, including websites, be accessible to those with disabilities (“Americans”).

Section 1557 of the Affordable Care Act (ACA) and Sections 504 and 508 of The Rehabilitation Act of 1973 extend this a step further– taking away federal funding from organizations that are not accessible.

For instance, this section of the ACA ensures not just a person’s disability status, but attributes such as race, color, national origin, sex, and race are protected from discrimination from health programs or activity that receive any funding from the Department of Health and Human Services” (“Section 1557”).

The Rehabilitation Act’s Sections address this concern in federal agencies to ensure the Information and Communication Technology (ICT) used by employees and members of the public are accessible (“Understanding”). It also prohibits discrimination against those with disabilities in these areas: “Programs and activities receiving federal financial assistance or conducted by executive agencies or the U.S. Postal Service” (“Understanding”).

Overall, the relationship between accessible UI/UX design and artificial intelligence is one of nuance. AI increasingly is becoming a co-pilot in UX research, an integral tool for designers. However, designers must build UI/UX design with both the importance of accessibility and the limitations and risks of artificial intelligence in mind. Only then can we build an inclusive society towards those that are able-bodied and disabled alike.

One of the goals of user-interface design is “To reduce the user’s cognitive load to a minimum” (Constanza- Chock 55). An important point Design Justice makes is that user-interface decisions will result in some users having the privilege of having a lower cognitive load than others and that this is not inherently wrong (Constanza- Chock 55). Default language settings are one example of this that is common and acceptable (Constanza- Chock 55). Another example of this concept is in two versions of a university admissions portal’s race/ ethnicity selection process (Constanza- Chock 58). In one version, the default race/ethnicity is set to White, Non-Hispanic, the most common race/ ethnicity group that will create a personal profile on this site (Constanza- Chock 58). On the other version, there is no default selected (Constanza- Chock 58). The majority of white users will have a smoother experience under Version A, as it requires less clicks; however, this version produces a slightly more time and click consuming (increased cognitive load) experience for people of color– perhaps along the lines of a microaggression.

The same essential principle of user-interface design being implemented in these two frequently encountered scenarios for UI/UX designers has a different ethical and sociotechnical component, one that would be perceived differently by different designers and users. This highlights the nuances hidden behind lines of code, or, rather, with the advancement of AI, the more technical aspect this job is known for.

Where the answers are not clear-cut is where designers must step in, and bring the community to the table. UI/UX design matters in a world that is ever-so-reliant on technology. It is integral to do the work to make sure designs are inclusive and accessible not just to obey the law, but to stay true to the governing principle of what it means to be a human– to have empathy and a moral compass.

Where a corporation sees a shortcut in seeing a product to market is where Inclusive UX Experts such as Davis shake their head and say the magic words, liability and revenue.

References

• “Americans with Disabilities Act Title III Regulations.” ADA.Gov, ADA. gov, www.ada.gov/law-and-regs/regulations/title-iii-regulations/. Accessed 23 May 2026.
• Costanza-Chock, Sasha. Design Justice. Community-Led Practices to Build the Worlds We Need. Tantor Media, Inc, 2021.
• Gilbert, Regine M., and Spandita Sarmah. Inclusive Design for a Digital World: Designing with Accessibility in Mind. Second ed., Apress, 2025.
• Office for Civil Rights (OCR). “Section 1557: Protecting Individuals Against Sex Discrimination.” HHS.Gov, U.S. Department of Health and Human Services, 9 Mar. 2026, www.hhs.gov/civil-rights/for-individuals/section-1557/fs-sex-discrimination/index.html.
• Teeters, Rikki. Conscious UX: Leading Human-Centered Design in the Age of AI: Designing the Future of Artificial Intelligence with Compassion, Inclusion, and Openness. First ed., ConsciousUX.Ai, 2025.
• “Understanding and Leveraging the Relationship between Sections 501, 504, and 508 of the Rehabilitation Act.” Section508.Gov, Section508.gov, www.section508.gov/manage/relationship-between-sections-508-504-and-501/. Accessed 23 May 2026.
• “Rehabilitation Act of 1973.” U.S. Equal Employment Opportunity Commission, U.S. Equal Employment Opportunity Commission, www.eeoc.gov/rehabilitation-act-1973. Accessed 23 May 2026.

“When, I wondered, had I last yearned for something other than simply feeling better?”

— The Invisible Kingdom, page 92

It was Monday, September 9, 2024. My eyes opened, natural sunlight from our small dorm windows greeting me. But, before I could walk down the steps of my bunk bed and get ready for class, I had to confront the bodily sensations deluding me out of the healthy privilege I had grown used to for the past nineteen years.

I had just gotten a shaded butterfly tattoo for my nineteenth birthday and was still learning to embrace being a college freshman– the communal bathrooms, sharing a dorm with someone, and learning to navigate the enormous University of Georgia campus.

I would also soon learn how to navigate the American healthcare system in the throes of chronic pain for the next four months of my life, without answers for why I was in debilitating pain, what could mitigate it, and how this would affect my academic career.

It was a rough period, no doubt, but, somehow I survived to tell the tale– moreover, I survived to create a major and professional aspirations stemming from those experiences. Making a major and planning to acquire over a decade of post-secondary education is an arduous journey, but nothing compares to waking up for the next 123 days in the worst pain of your life, an invisible illness no test or doctor can explain.

For those suffering from chronic pain, a diagnosis is more than a descriptive phrase on an electronic health record, a set of code words hard to pronounce that clinical professionals break down to a patient’s level. It’s a label that makes us feel seen, understood, and gives us hope. Hope of a cure, and for someone facing our symptoms in the future to get definitive answers, more than that, the answers we deserve.

In reading The Invisible Kingdom, I came across a dance of words in which I felt that my experience was shared by others, people I didn’t know, but I understood and they understood me in a way that those closest to us may never, despite their empathetic attempts. I couldn’t imagine a better quote to begin this article (O’ Rourke 8).

“But this is not a story of recovery or the overcoming of a disease; the focus is not on my being a survivor, or getting “better,” as it is in that object turned out to be learning to live with uncertainty and incapacity. Without data or answers, I had to make room for a reality that included my near-total lack of control. I still don’t have definitive answers. But gradually, peeling away uncertainty layer by layer, I arrived at what feels, to me at least, like a truth I can live with.”

Autoimmune diseases affect over 15 million Americans, and they are rising at near epidemic rates according to scientists (Abend et al.; O’ Rourke 5; 21). However, the Autoimmune Association estimates that as many as 50 million could be affected due to the dramatic changes in environment and lifestyle that have occurred since 1991 (O’ Rourke 22). Antinuclear antibodies (ANA), commonly found in those suffering from autoimmune issues, have tripled in prevalence in adolescents since then, and women account for 80% of autoimmune patients (O’ Rourke 22). When accounting for women of color, the health disparities enlarge, as Black and Hispanic women are diagnosed with lupus, a common autoimmune condition, at nearly three times the rate of non-Hispanic white women, and have a mortality rate of that multiple as them as well (O’ Rourke 22). When we account for how women of color are underrepresented in clinical trials, and often have greater barriers in accessing the healthcare essential to being diagnosed, the disparities widen further (O’ Rourke 22). Furthermore, according to the Autoimmune Association, “It takes an average of three years (and four doctors) for a sufferer to be given a diagnosis of an auto-immune disease,” a level of effort, time, and resources that those of marginalized communities often do not have (O’ Rourke 23). In addition to that, reliable diagnostic tools are still scarce for the over 100 autoimmune diseases and there is no cure for them, making chronic pain the reality of millions (O’ Rourke 23; “Autoimmune”). Moreover, one Harvard researcher points out that “Medical science’s understanding of auto-immunity lags a decade behind its understanding of cancer,” a disease still only partially understood (O’ Rourke 21).

Until medicine catches up to the needs of those suffering from autoimmune issues, whether they know it or not, it pays to understand the plight of these “invisible” people. It is only by bringing their stories to the light can we increase public awareness, and, therefore, federal funding and policy reform to better face the autoimmune disease epidemic.

For instance, over one billion was allocated by the National Institutes of Health to autoimmune disease research, conditions that 23.5-50 million Americans suffer from (“Latest”; “Funding”). Meanwhile, 8.1 billion was allocated to cancer research (over two million projected new cases and ~611k projected deaths for 2024) and over three billion to HIV/AIDS research (over 1.2 million Americans had HIV in 2024, AIDS refers to the latest HIV infection stage) (“Funding,” Siegel et al., “CDC”).

In telling my story, with the courage that reading O’ Rourke’s health testimony has brought me, I hope to make these numbers feel more real, more connected to the stories of our loved ones and communities, making us feel more passionately about how to reduce the pain that our fellow Americans face– if only there were more resources to do this literal life or death work.

When I briefly tell my story to new friends or those that ask why I feel so passionately about pursuing healthcare technology law, they are often surprised. My story sounds like a living nightmare for any nineteen-year-old far from home to face, especially as I did not walk into university with a strong peer network or access to a car– and it was. There were numerous doctors appointments, primarily with my primary care physician at the University Health Center, but also to neurologists, physical therapists, ear, nose, and throat doctors, and as a final suggestion of my primary care physician, a massage therapist.

Coming from an upper middle class background and going to a university that had many of these services on-campus, I came from a position of privilege. But illness discriminates against no one. At the end of a four month journey, I was given “the talk” by my primary care physician that we might never know what triggered my sudden health decline, and we won’t know how long it will last if it will ever end, or know of a cure. Lucky for me though, a commonly known neuropathic pain relieving medication gave me a 97% reduction in symptoms: amitriptyline (Moore et al.). A simple Google search will lead you to seeing that it is most commonly used as an anti-depressant– which leads me to my next point (“Amitriptyline”).

It is estimated that up to one-third of those with a serious medical condition will have symptoms of depression (“Dealing”).

I was one of them. To anyone suffering from unresolved chronic health issues, it’s a given that it will take a mental toll on you. How could it not? I was wasting away “the best years of my life” in and out of medical institutions, not getting answers and spending thousands in the process. My debilitating headaches were causing me to face declined cognitive function– it was harder to focus and my memory got worse. The same Introduction to Psychology exam I would have spent a few days before preparing, I now had to spend 4-6 weeks to do just as well. Combined with the fact that I had to withdraw from Introduction to Biology and its lab because I physically couldn’t complete the course, all while wanting to be an Anesthesiologist's Assistant further complicated matters.

As I got no answers from months of seeking treatment, I had to make peace with the reality that I may never be “normal” again. Having the same intelligence that put me in the top 5% of my graduating class academically may never be in reach again. The reason why I was at the University of Georgia was taken from me and I spent the next few months trying to figure out what academic and professional path I would pursue in its absence.

I stumbled upon law because it was the only academic and professional sector left. I had realized math and introductory science courses were not particularly interesting and I always excelled at English. Toss in an extended, eye-opening experience in the American healthcare system, and an interest in artificial intelligence, and we’ve got the building blocks to a 17-page major curriculum for Healthcare Technology Law and Regulation through UGA’s Interdisciplinary Studies program.

It is, as my former freshman-year roommate said, excellent material for graduate school personal statements. I would add, an extremely costly one.

The only reason I was able to survive this period in my life was not due to unwilting optimism in regards to my poor health, but because of two important things in my life: God and my loved ones. When I caught myself daydreaming about the afterlife, I reminded myself that God’s Plan is intentional and will, one day, make sense– even if you wake up in the worst pain of your life for 123 consecutive days in a row.

O’ Rourke's statement, “But I had not anticipated what should have been my biggest fear of all: that I would lose hope” could not ring more true, for as long as we have hope, we can endure (179).

The never-ending dance between severe health issues and balancing being a normal college freshman was not one of grace. Some days were better than others, but, till this day, over 1.5 years later, not a day passes where I can fully forget what it is that afflicts me. I don’t know how my neck accumulated severe nerve damage– I never got injured. The closest guess anyone has is that by carrying my backpack around campus would have put increased pressure on my back and could have aggravated the issue. It’s not a particularly logically strong conclusion but chronic health issues rarely are. People that suffer from them rarely get a “heads-up” from their doctor that this may be in their cards or how to avoid it. Autoimmune diseases stem from one-third genetic and two-thirds environmental causes, but as O’ Rourke points out, many like her try supplement, food, therapy, and other lifestyle modification after another to no avail (O’ Rourke 22). As I mentioned earlier, health issues do not discriminate so as a well-off educated middle-aged married straight white woman, she often threw money, time, and effort essentially at a brick wall.

In her own words:

“‘It’s bearable, and yet I cannot bear it,” wrote Alphonse Daudet of living with syphilis. I had revised his line in my head: “It is unbearable– and yet I bear it.” I survived, but it was the nature of the disease to rob me of myself.”

— O’ Rourke, pg. 261

As I write this article for The Regulated Pulse, I am reminded of my former reality. I doubt if anyone can be more passionate about pursuing a certain academic and career track than me as I really do believe I did not go through Earth’s version of Hell to turn around and not work towards advancing healthcare for Americans for the rest of my life– through policy and advocacy work as well as through the cases I may encounter as a practicing attorney.

I can’t write this piece without mentioning the elephant in the room when it comes to the struggles of those with serious health issues: the lack of clinical empathy we often face.

There were several times during the throes of my health challenges I would get quite emotional in the doctor’s office. Of course, it was not my intention to illicit Kleenexes being handed to me while I sat on a stiff patient’s table but to go through pain for an extended period of time like that and not know why can be extremely frustrating. There were multiple times my primary care physician would suggest I seek therapy, and wondered how my parents were faring as I went through this while living three-hours away.

And therapy I did go to. Once a clinical pain psychologist was employed by the University Health Center, I knew it was high-time to seek mental health help. Although my friends were critical to me feeling heard and understood, it was nice being able to dump your problems on a middle-aged white lady that made empathetic faces as you ranted about why nearly your whole college career has been a complete sham.

This quote summarizes the source of my frustrations quite poetically:

“‘I don’t believe I will get better,” Daudet wrote, “... yet I always behave as if my damned pains were going to disappear by tomorrow morning.’” (O’ Rourke 97).

But, alas, life isn’t so bad anymore, and for that I am quite grateful. My beloved amitriptyline’s price with insurance did increase by 2,252.94% last month, but, fortunately, that is still $20 for a month’s supply. I think I can spare a 20 to function normally (for the most part; I still deal with the occasional tics, convulsions, and breathing problems that also began at the same time my headaches did, but, you know, life’s not fair).

I have thought about what I would do if it suddenly jumped to, let’s say, $200 or $400 and the thing is, like many Americans, I would just have to find the money. It is high time the United States implements a nationalized single-payer healthcare system– costs have never been higher, and as I’ve experienced, financial stress only adds to your existing health issues. Being referred to one hospital for my MRI instead of a local clinic meant paying $1,600 versus $400 with insurance. Americans deserve better, or rather the bare minimum as most other rich democratic nations have shown.

AI Disclosure Notice

This blog post was written by the author with the assistance of generative AI. AI tools were utilized to compile historical research data, analyze federal funding statistics, and help refine the formatting and structure of the final text. All personal experiences, narratives, and creative directions are entirely the author's own.

References

• Abend, Aaron H., et al. “Estimation of Prevalence of Autoimmune Diseases in the United States Using Electronic Health Record Data.” The Journal of Clinical Investigation, American Society for Clinical Investigation, 12 Dec. 2024, www.jci.org/articles/view/178722.
• “Amitriptyline (Oral Route).” Mayo Clinic, Mayo Foundation for Medical Education and Research, www.mayoclinic.org/drugs-supplements/amitriptyline-oral-route/description/drg-20072061. Accessed 9 June 2026.
• “Autoimmune Diseases.” Cleveland Clinic, Cleveland Clinic, 22 Oct. 2024, my.clevelandclinic.org/health/diseases/21624-autoimmune-diseases#management-and-treatment.
• “CDC Publishes 2024 National HIV Data.” Centers for Disease Control and Prevention, Centers for Disease Control and Prevention, www.cdc.gov/nchhstp/whats-new/2024-hiv-surveillance-data.html. Accessed 9 June 2026.
• “Coping with Chronic Illnesses and Depression.” WebMD, WebMD, 27 Aug. 2024, www.webmd.com/depression/chronic-illnesses-depression.
• “Latest Policy Brief Highlights State of Federal Autoimmune Disease Research and Need for Continued Prioritization.” Society for Women’s Health Research, Society for Women’s Health Research, 21 Apr. 2024, swhr.org/latest-policy-brief-highlights-state-of-federal-autoimmune-disease-research-and-need-for-continued-prioritization/.
• Moore, R Andrew et al. “Amitriptyline for neuropathic pain in adults.” The Cochrane database of systematic reviews vol. 2015,7 CD008242. 6 Jul. 2015, doi:10.1002/14651858.CD008242.pub3
• O’Rourke, Meghan. The Invisible Kingdom: Reimagining Chronic Illness. Riverhead Books, 2022.
• “Report.” National Institutes of Health, U.S. Department of Health and Human Services, report.nih.gov/funding/categorical-spending#/. Accessed 9 June 2026.
• Siegel, Rebecca L et al. “Cancer statistics, 2024.” CA: a cancer journal for clinicians vol. 74,1 (2024): 12-49. doi:10.3322/caac.21820