The Price of Being “Pink” by Sophia Archos

Women in the United States not only face pay discrimination in the workplace, but also price discrimination in the marketplace. On average, men will earn $10,381 more in 2022 than women will across the nation. Further, women pay an estimated $1,350 more annually than men do for similar products, goods, and services on average. As a result, women are squeezed economically from both sides. Such gender-based price discrimination against women is known as the “Pink Tax.” There are many ways in which the Pink Tax infiltrates the market, and it impacts families raising girls as much as independent adult women. For example: (1) Girls toys cost 11% more, bikes cost 6% more (helmets 13% more), and clothing range from 4-13% more than boys; (2) women’s versions of personal care products, like shampoo and conditioner, soap, razors, and deodorant, cost 4-48% more than men’s versions; (3) women pay up to 13% more for similar clothing than men; and (4) women’s haircuts cost about 40% more than men’s.

Because of the Pink Tax, by the time a woman reaches 74 years of age, she will have spent approximately $100,000 more than her male counterparts for similar products, goods, and services. This is not a trivial amount of money nor is this a trivial issue. The opportunity cost of women spending more of their income on basic human necessities, like personal care products and clothing, is the ability to save and invest money for their future. Thus, potential adverse effects of the Pink Tax may be: increased female dependence on male partners, stigma or cost-association with raising daughters, and difficulty accumulating wealth and assets over time. Even so, there are several justifications offered for the Pink Tax. One example is that tariffs on imports for women’s products are often higher.Another is that changes in manufacturing (materials, color, size) can be more expensive. Further, some manufacturers and distributors simply believe that women will pay more for a product and, thus, charge more. While these justifications, or rather excuses, have been long accepted, American consumers and legislators alike are trending toward abolishing gender-based price discrimination nationwide.

The “Pink Tax Repeal Act” and “Affordable Care Act” are two examples of federal legislative intervention combatting gender-based price discrimination. Prior to the passage of the Affordable Care Act in 2010, women paid one and a half times more than men for health insurance. This is especially disappointing because these higher-cost health insurance plans for women did not typically include additional benefits for maternity care. While it is arguable that the addition of maternity care in these plans could have justified the increased price for women’s health insurance, since no such maternal care coverage was usually not included, this is an example of gender-based price discrimination. More recently, the 2021 “Pink Tax Repeal Act” was introduced. The Act seeks to prohibit the sales of substantially similar products at different prices “based on the gender of the intended purchaser.” The bill qualifies “substantially similar” as a product in which “the only difference between two products is color.” A perfect example is that a girl’s pink helmet costs $27.99, while a boy’s costs $14.99.

Until the Pink Tax Repeal Act is enacted, individual states are responsible for enforcing the Pink Tax. While the majority of states uphold the Pink Tax, more and more are doing away with it. One potential reason for States keeping the Pink Tax is the revenue it generates. For example, while New York declared gender-based pricing illegal in 2020, it was estimated that New York would lose around $14 million annually as a result. Although still a minority, since 2016, 10 states have eliminated the Pink Tax : California, Connecticut, Florida, Illinois, Nevada, New York, Ohio, Rhode Island, Utah, and Washington. Thus, while only one-fifth of the states have taken a stance against gender-based discrimination, the court system may be able to pick up the slack.

A recent example is Schulte v. Conopco, Inc., 997 F. 3d 823 (8th Cir. 2021). In Schulte, the plaintiff alleged in her complaint that the defendants violated a Missouri statute by engaging in the discriminatory marketing of men and women’s deodorant. This case was dismissed on grounds that the plaintiff failed to allege sufficient facts to support the court finding that the sales of the deodorants at issue were “extrinsically discriminatorily deceptive or unfair.” Essentially, since women are in fact able to purchase male-marketed products, which cost less, the court upheld gender-based price discrimination. Therefore, assistance by the court system does not appear promising since a similar case regarding the pricing of hair regrowth treatment for women (a generic alternative to Rogaine) was also dismissed in Lowe v. Walgreens Boots Alliance, Inc. 2021 WL 4772293 (N.D. Cal. Sept. 23, 2021). As a result, there are two solutions to banish the Pink Tax or, at least, create uniformity of price discrimination across the States: (1) the “right” case marches it way up to the Supreme Court; or (2) Congress passes the Pink Tax Repeal Act, or similar legislation.

Transnational Health Insurance: A COVID-19 Reflection by Lenny Brahin

In 2018, I wrote an article called “Medicare, Medicaid, and Mexico: A Transnational Health Insurance Plan” I described a United States-sponsored, globalized health insurance framework that would reward interconnectedness and collaboration. While no one could predict a global pandemic, the need for transnational health insurance has never been more apparent.

What is Transnational Health Insurance?

While COVID-19 has dramatically altered the medical tourism market, the pandemic has also revealed the unsustainable strain put on domestic healthcare providers. Transnational health insurance offers a regulatory framework for medical tourism. Here, medical tourism describes the process of receiving healthcare services abroad, rather than domestically. Due to previous trade commitments, the United States precludes comprehensive health insurance portability. Transnational health insurance offers its customers coverage for pursuing treatment and medicine abroad.

As our world becomes more globalized, there is a strong need for our healthcare systems to follow suit. Coordination, collaboration, and cooperation are all necessary to combat global health crises. While it is impossible to say that transnational health insurance could have stopped the pandemic, there is no doubt the collection and distribution of information between countries would have cultivated greater pragmatism with regards to prevention and preparation.

Scientists have speculated that COVID-19 is not the last of many pandemics that society will face. By encouraging citizens to place trust in global health markets, the United States can pave the way in developing global health security.

Gains from Trade

Economically, transnational health insurance would relieve a huge burden on the typical American consumer of healthcare. For some, it is cheaper to fly to Egypt to fix a toothache than it is to get it checked on in the United States. This stems the United States isolating its healthcare market from competition which artificially keeps prices high. By opening affordable global health care options for American citizens, pharmaceutical companies and hospitals in the United States will be forced to lower prices to compete with global markets.

For the United States, skepticism over foreign medical treatment and complex international trade agreements stagnated industry growth. Transnational insurance solves these issues by creating public trust since all healthcare facilities covered by insurance would need to be vetted and held to higher safety standards. Additionally, transnational health insurance would permit trade liberalization without violating the United States’ trade commitment under the General Agreement on Trade in Services which is currently deterring private investment. This allows the government to encourage a race to the top for quality. Once the market stabilizes in price, high-quality care will determine where Americans get their healthcare. Without a monopoly on treatment, United States hospitals will need to find new ways to incentivize patient intake.

Diplomacy

In times of geopolitical turmoil, scientific diplomacy through health collaboration provides a meaningful way to connect the global community. By developing threads of commonality between citizens of the world, geopolitical crises of all sorts can be mitigated. The insurance and healthcare industry implicates huge aspects of the global economy. By instituting global health norms through regulation and insurance standards, transnational health insurance motivates cooperation on all sorts of topics; countries who would otherwise have unrelated domestic goals, could unite under a common cause for global health by standardizing their healthcare industry to compete for patients from the United States. Ultimately, other countries could adopt similar portability standards which would further strengthen interconnectedness.

Conclusion

Transnational health insurance offers a novel solution to increasing healthcare costs and crises. The capacity of the global community to respond to problems of all sorts give physicians, scientists, and policymakers a mechanism to make our world more interconnected. By developing a global health community, the United States can cultivate a position of leadership in approaching future pandemics.

Incarcerated Women’s Inadequate Access to Menstrual Hygiene Products by Natalie Fouque

In the age of mass incarceration, incarceration rates among women have continued to skyrocket over recent years. In 1980, there were about 26,000 incarcerated women in the United States. That number has significantly increased by 700%, to about 222,000 incarcerated women in 2019. With the rates of incarcerated women increasing, the inadequate health care provided to this population is glaringly apparent. Women have specific health needs that must be attended to even while in correctional facilities, including access to menstrual hygiene products. However, incarcerated women are not provided with adequate access to treatment when it comes to their gender-specific health care needs.

 

Given the majority of incarcerated women are of a younger age demographic, the majority of women incarcerated are thus still menstruating. Common stressors and situations that affect most incarcerated women can have a significant impact on their menstrual bleeding. For example, factors such as poverty, exposure to trauma, addiction, and mental illness can lead to various gynecological conditions. Studies have shown that, as a result of these factors, forty percent of incarcerated women have abnormal menstrual bleeding. Despite this, women in correctional facilities do not have ready access to consistent and quality menstrual hygiene products.

 

The menstrual hygiene products that incarcerated women do have access to are of sub-par quality. The sanitary napkins that are typically provided at correctional facilities have low absorbency and do not have wings. Along with the poor quality of sanitary napkins, correctional facilities typically do not provide incarcerated women with the appropriate quantity of sanitary napkins needed for their entire menstrual cycle. Women typically need about twenty menstrual hygiene products for a single menstrual cycle, yet many correctional facilities only allot about ten menstrual hygiene products for a woman’s menstrual cycle. Most correctional facilities are also very limited on the variety of menstrual hygiene products they provide. Tampons, for instance, can be considered a scarcity in some facilities given most prisons do not even provide tampons to their inmates.

 

Furthermore, there is currently no overarching policy in place regarding the distribution of feminine hygiene products in correctional facilities, leading to inconsistency among facilities in the United States. Many correctional facilities give prison guards complete discretion and control over the distribution of feminine hygiene products to inmates. As a result, this leads to prison guards providing unequal treatment to inmates by unevenly distributing the products. This discretion gives prison guards an immense power over female inmates by withholding these products as a form of punishment, or by requiring female inmates to provide something in exchange for receiving these products. Allowing prison guards to have this discretion is a major factor as to why incarcerated women have severely inadequate access to menstrual hygiene products. These are products essential to every woman’s menstrual hygiene, and far too many correctional facilities allow guards to withhold these products as a ploy to punish and humiliate incarcerated women, and thereby deprive them of basic health care.

 

There are serious health effects at risk when women are deprived of their menstrual hygiene needs. When incarcerated women are deprived of access to menstrual hygiene products, they typically resort to homemade alternativesin order to avoid bleeding through their clothes. These alternatives can be very unhygienic and thus lead to serious infections. Some studies show that mismanagement of a woman’s menstrual cycle can even increase a woman’s risk of developing cervical cancer.

 

The gender-specific health needs of incarcerated women are severely neglected, especially regarding adequate access to menstrual hygiene products. The most promising solution to eliminating this health inequity is passing new legislation, at both the state and federal levels, that would guarantee female correctional facilities are supplied with sufficient and quality menstrual hygiene products and ensure the products are distributed to inmates in an equitable manner. Women, no matter their situation in life, deserve to receive adequate health care. With proposed solutions and legislation, it is hopeful that incarcerated women will no longer be deprived of their basic health care needs and be provided with better access to menstrual hygiene products.

 

 

The Plight of Urban Native Americans by Margot Sheridan

Native Americans have suffered extreme inequities in health care and health outcomes throughout the history of the United States. However, over the past fifty years, the health care needs of Native Americans have drastically changed as this population becomes increasingly urbanized. To address this new reality and provide legally obligated health care more efficiently and effectively, the federal government must develop new funding mechanisms that either supplement or ideally replace the current Indian National Health Service (IHS).

Treaties in the 1800s between the United States and tribal nations laid the legal foundation for the federal government’s obligation to provide health care services to American Indians and Native Alaskans. The Indian National Health Service, an agency within the Department of Health and Human Services, was established in 1955 to create a more uniform and centralized mode of providing services.  Despite this legal obligation to provide health care, the Native American population has faced significant and continued health disparities. Native Americans currently have a life expectancy that is five and a half years less than the national average and they continue to die at higher rates than all other Americans in many categories of causes of death, including chronic liver disease, diabetes, chronic lower respiratory diseases, assault/homicide, and intentional self-harm/suicide.

One major reason for these disparities is that the IHS has been chronically underfunded throughout its history. According to an analysis by the National Congress of American Indians, in order to match the level of care provided to federal prisoners, funding for the IHS would have to almost double.

Another major issue heightening the health care disparities Native Americans face is that IHS funding is not designed to provide care effectively for the mass migration of Native Americans who have moved from remote reservations into urban areas. Today, around seventy percent of Native Americans live in metropolitan areas, compared with thirty-eight percent in 1990. IHS funding has not reflected this major demographic shift, as there are 54,000 urban Native Americans who lack any access to IHS services or tribally operated facilities. As the New York Times reported, in recent years, on average only about one percent of the IHS budget has been allocated to urban programs.  Urban Indian Health Programs have been established to try and meet the needs of those who fall outside of IHS services, however there are approximately one million people living in the service areas of these nonprofit organizations, creating a demand for service that is far greater than can be met.

This large disparity in federal funding is problematic for many reasons as it clearly fails to meet the federal government’s duties to provide health care under the trust obligation. Given that the program designed to provide services is not reaching or providing care to those in inner cities, the funding system for IHS’s programs needs to be readjusted to reflect the new reality. In addition to readjusted and increased funding, more awareness needs to be created around the issues that urban Native Americans face. As Janeen Comenote, executive director of the National Urban Indian Family Coalition, noted , “[t]his is a population that is invisible…people assume they’re not there and don’t face some of the same issues that impact Native peoples who live on reservations”. Without more outreach programs, education programs, community network groups, and increased funding, Urban Indian Health Programs will continue to struggle to provide adequate health care to urban Native Americans, care that the federal government is legally obligated, yet failing, to provide.

Women’s Figure Skating – An Olympic Scandal by Simone Freeney

The Russian Olympic Committee (ROC) is in the middle of yet another Olympic doping scandal. One of ROC’s women’s figure skaters, Kamila Valieva, tested positive for the medication trimetazidine. She was favored to win gold before the Games started. Trimetazidine (TMZ), a metabolic modulator, has been banned by the International Olympic Committee (IOC) since 2014. The medication is listed under the section non-specified Hormone and Metabolic Modulators, S4.1. The substances listed under this section are prohibited at all-times, both in and out of competition. Russia is not allowed to compete as a country and is competing as the ROC due to a history of doping. A disqualification would move the United States team into the gold medal position. Prior to the World Championships, Valieva tested positive for this medication through random testing that Olympic-level athletes are subjected to. There is little information on how she was reprimanded then, but no official warning or ban was issued. Additionally, she was still able to compete at the World Championships and qualify for the 2022 Winter Olympics. The official results of the drug test did not make it to the IOC until after the Olympics had started, even though the Russian Anti-Doping commission was aware of the substance in her system. Valieva faced up to a two-year ban from competition as a result of this infraction. However, she was allowed to continue with her Olympic competition.

 

Trimetazidine, also known as TMZ, is commonly used to treat coronary heart diseases such as angina or to assist with blood flow through stints. The idea behind banning this medication is that TMZ helps your heart to function better under immense stress. Athletes during competition are often putting their heart under stress and TMZ could help performance by pushing more blood to the rest of the body. The IOC does have medical allowances for use of TMZ, but no news of a medical exemption request on behalf of Valieva to the IOC has surfaced. The IOC has previously given warnings about banned drug use to competitors. Those times are limited to “protected persons” (those under the age of 16) who can prove that their use of the banned medication is “unintentional.”

 

The standard of proof for unintentionality is handled on a case-by-case basis to allow for the inclusion of emerging technology and medications as well as extenuating circumstances. I find it hard to believe that a 15-year-old would not be able to find the prohibited medications list. In a matter of five minutes and a google search, I was able to find a complete list of all banned substances with all necessary qualifiers. Additionally, as tensions rise between Russia and the United States, disqualifying Russia and keeping them from two gold medals might increase tensions. Especially because this could lead to the United States taking home both medals. It is entirely possible that the warning or ban might be kept from the public as it has been for other competitors. The difference between previous instances and the present one is the national news coverage Kamila Valieva has received for her excellence and Russia’s current ban from competition.

 

In the end, the IOC has specifically listed TMZ as a banned substance for four Olympic cycles. Many doctors believe that TMZ would not have actually advantaged a competitor, but that does not change its status as a banned substance. As the United States saw with the disqualification of favored sprinter Sha’Carrie Richardson, in the 2020 summer Olympics, using a banned substance is taken very seriously. Sha’Carrie Richardson tested positive for cannabinoids prior to the Olympics and was banned from competition. Cannabinoids are only banned while an athlete is competition season. TMZ is banned at any point throughout the year before an athlete retires, regardless of the competition season. While many will say that cannabinoids and TMZ are not similar in any way, the previous Olympic cycle set a precedent to ban competitors for testing positive with a substance on the banned list. Following this precedent, Valieva should be stripped of her medals and receive a ban from competition. However, there are extenuating circumstances such as Valieva’s age and Russia’s history of doping. This was the result of the arbitration. Vaileva has started competition and will not be banned from further competition citing that she is under 16 years old and qualified as a “protected person.” While that is technically correct, it is not the only thing necessary to escape reprimand. There is no news on how Vaileva proved this was unintentional. We do know, however, that Valieva did appear virtually at the arbitration and was able to plead her case.

 

This decision has angered many former and current Olympians that have been training and preparing the correct way for years. TMZ in particular is banned both in and out of competition. The focus has shifted in the IOC’s view from Valieva to her coaches and Russia. The IOC plans to launch an independent investigation of the coaches, but it doesn’t satiate the anger from other Olympians who feel that she was handed a gold medal unfairly. ROC is expected to make a podium sweep in Women’s individual figure skating. This Olympic cycle has been riddled with accusations of corruption and this situation is no different.

 

Allowing Valieva to skate was a slap in the face to every athlete that competes clean and every athlete that hasn’t. It goes against the spirit of competition that the IOC has stated they want to see from all competitors. In the end, Valieva did not get gold. She finished in fourth place. Her teammate, Anna Shcherbakova, won gold. This was the most heartbreaking of circumstances. Valieva fell four times during her performance, solidifying her teammate’s gold medal. However, ROC’s coaches did not celebrate with Shcherbakova. She was shown on camera, alone, clutching a teddy bear while her coaches tended to a dejected Valieva after her performance. I can only suspect that the arbitration and uncertainty around the competition affected Valieva’s mental ability to skate. However, that does not excuse the way Valieva and the ROC coaches reacted when she didn’t win. They should have celebrated with their teammate, another young girl. Another ROC skater, Alexandra Trusova, was consoled when she found out she could not win silver saying that she “never [wants] to skate again.” Ignoring the win of one teammate and participating in a doping scandal reiterates that ROC’s coaches have failed to protect their young skaters. The coaches were the only people these skaters could depend on at the Olympics especially because coronavirus prevented many people from traveling. ROC’s coaches failed these skaters in every way, and I look forward to seeing the results of the coaches’ investigation.

 

 

Two Challenges Brought to Price Transparency Rules by Angelina Campin

There have been two recent lawsuits brought to challenge portions of the health insurance price transparency rules promulgated under the Trump Administration, one of which was recently withdrawn. These rules are supposed to go into effect in stages, but the eventual goal is to have pricing information of items and services covered by health insurance companies available to the public.

 

In both legal challenges, groups are suing the Department of Health and Human Services (HHS). The first lawsuit was brought by the Chamber of Commerce. Chamber of Commerce of the United States of America et al v. United States Department of Health and Human Services et al, 6:21CV00309. The Chamber was challenging the section of the rule that requires insurers to post internal pricing data, including the “historical net prices” of prescription drugs, in three machine-readable files on a website. The Chamber was arguing that this provision of the rule was unlawful because it violated notice-and-comment rulemaking as well as went beyond the statutory authority of HHS in the Affordable Care Act.

 

The Affordable Care Act requires disclosures that are made to the public to be made in “plain language.” The Chamber argued that this pricing data is highly technical and could not be understood by the average consumer. Finally, the Chamber was arguing that the disclosure of prices would lead to increase cost to patients as it reduced competition among insurers.

 

Since the Biden administration delayed enforcement of provisions of the rule that were the basis of the lawsuit, the suit was withdrawn on August 25, 2021. The Chamber has said that they are going to watch the development of the rules to decide whether to refile the suit.

The second lawsuit was brought by The Pharmaceutical Care Management Association (PCMA). Pharmaceutical Care Management Association v. United States Department of Health and Human Services et al, 1:21-cv-02161. The basis of the PCMA lawsuit is very similar to the Chamber lawsuit. The PCMA is challenging the posting of historical net prices of prescription drugs on the basis that it is unlawful and would result in increased costs to patients.

A similar lawsuit in a DC federal appeals court saw the upholding of a similar rule. This rule required hospitals to disclose the negotiated rates between hospitals and insurance companies. The American Hospital Association challenged the rule on the basis that it went beyond the statutory authority in the ACA. I believe that this means that a court could decide the PMCA lawsuit the same way – by upholding the rule as not going beyond the statutory authority of the ACA.

 

In my opinion, if the enforcement of these rules moves forward, health insurance companies might attempt to lobby Congress to change these rules under the Congressional Review Act to protect the disclosure of their negotiated rates. I do not think that these rules exceed beyond the statutory authority of HHS in the ACA because the goal is to eventually have the information be easily searchable and understandable by the average consumer. I think that the transparency of negotiations as well as the eventual pricing of services and goods would be important for consumers and I believe that as consumers of health insurance, we deserve to have more transparency into health insurance pricing generally.

About the JHLI Fellowship and Summer Scholars Program – by Samuel Rossi

The prestigious Health Law Fellows Program provides DePaul College of Law Students with opportunities to participate in the substantive work of the Jaharis Health Law Institute (JHLI). Students can apply to become Fellows by submitting an application, and they maintain fellowship status by participating in a variety of activities throughout the academic year, including attending the lunch lecture series events, posting on our blog, research and writing, mentoring, planning and attending the annual symposium, and various health law program social events. One of the many benefits of maintaining fellowship status is that Fellows are eligible to apply for the JHLI Summer Scholars Program. This Program provides students with paid legal internship placements at a variety of health law job sites that run the gamut between positions in-house with health systems and corporations, to law firms, to policy and direct legal service organizations. Often times these positions are unfunded, but the Summer Scholars Program allows students interested in health law to pursue their interests and gain valuable legal experience without financial barriers.

As a JHLI Fellow and Summer Scholar in both 2020 and 2021, I worked in the Medical Prosecutions Unit at the Illinois Department of Financial and Professional Regulation (IDFPR) and received a $5,000 stipend from JHLI each summer as compensation. My work at IDFPR helped me gain valuable knowledge about health law generally and further allowed me to hone my reading, writing, and researching skills. Some of the work I performed included drafting, issuing, and filing discovery motions and consent orders, compiling and sending file materials to medical experts for review, and performing and collecting medical literature and case research. This position also allowed me to connect with other established attorneys in field of health law, including my supervisor and other attorneys in the office. These newfound relationships have resulted in letters of recommendation, referrals for other positions, and will undoubtedly benefit me in my career path after graduation. Although this job at IDFPR was of interest to me, I was initially hesitant to accept the position because it was unpaid. However, the Summer Scholars Program stepped in and allowed me to pursue my passion in health law while still receiving a wage. Other placements this summer include Sinai Health System, The American Medical Association, Walgreens, Shirley Ryan Ability Center, iRythym, HillRom, Malecki and Brooks, Legal Aid Chicago, and many more. I encourage any DePaul College of Law students interested in health law to learn more about the Health Law Fellowship and Summer Scholar Program.

For more information or to submit your application, please email our Executive Director, Alice Setrini.

 

 

JHLI Symposium 2021: Production and Distribution of COVID-19 Vaccines – Professor Ana Santos Rutschman by Courtney Berlin

Health law in an incredibly broad and dynamic field centered around technology. The field is ever changing as health care law and technology advance. In some aspects, the field is advancing as medical technology improves. However, the COVID-19 pandemic produced significant questions and concerns regarding technology and health disparities.

Last week, the Jaharis Health Law Institute hosted a Spring Symposium addressing Health Disparities: Is Technology the Answer? Ana Santos Rutschman, Assistant Professor of Law, Center for Health Law Studies at Saint Louis University School of law, discussed the production and distribution of COVID-19 vaccines with respect to health law related issues. She highlighted that to some extent, the law and society treat vaccines and other life-saving goods as commodities.

How do we as society produce vaccines and allocate emerging health goods at such a rapid rate? Professor Rutschman explained that the production of COVID-19 vaccines are subject to contracts and reflect an intellectual property framework. Generally speaking, she noted that scientifically, the United States succeeds in producing critically needed health goods, vaccines in particular. For example, the United States controlled the Ebola virus outbreak, and in record timing, approved the Ebola vaccine.

Even with the ability to produce critical health goods at such a rapid pace, the United States struggles to distribute vaccines equally among minority racial and ethnic groups. Theories of inequalities in distribution and production of COVID-19 vaccines reflect under-enrollment of racial minorities in clinical medical trials. Professor Rutschman, quoting Dr. Anthony Fauci, mentioned that COVID-19 clinical trials failed to properly reflect the racial and ethnic makeup of the United States. The law requires some representation of minorities but this minimum is very low compared to actual numbers.

Vaccines in particular come with data and trust deficits which cause uncertainty among minority communities. Professor Rutschman believes minorities are systematically short changed within the field of health. In order to make a difference and combat health disparities, Professor Rutschman argues that meaningful changes are required. Vaccine distribution and contract law must work together. Systematic changes are needed. The government can correct some inefficiencies regarding vaccine production and distribution, however administrative changes are needed to do so.

 

 

JHLI Symposium 2021: Telehealth in Rural America – Professor Valarie Blake by Samuel Rossi

COVID-19 has exposed the structural barriers at the root of health disparities in the United States. This year’s Jaharis Symposium focused on the premise that while technological advances have the potential to revolutionize the delivery of health care, they also raise significant questions about who has access to these innovations and whether they are advancing the interests of the populations with the greatest needs.

 

As part of this symposium, Valarie Blake, a Professor of Law at the University of West Virginia, presented her research on telehealth in rural America with a focus on the Appalachian region. Professor Blake explained that the health status of Appalachians is near the bottom of America when it comes to health outcomes, such as poisoning deaths, diabetes deaths, HIV prevalence, and more. This is due in part to the many tangible and intangible barriers that people living in rural Appalachia face when it comes to healthcare, such as a lack of sufficient healthcare force, travel barriers, low health literacy, the normalization of poor health, and a general mistrust of medical professionals. Telehealth could be a solution to some of these barriers, Professor Blake explained, but it cannot and should not be the only option. Telehealth has the potential to address problems with transportation and provider shortages, but poor internet speed and coverage can bring more issues. Furthermore, the advent of telehealth presents significant long-term challenges in areas such as quality of care, privacy, fraud, and equality. For example, safeguards are needed for long-term prescribing of controlled substances, many rural states lack sophisticated fraud detection forces, and the lifting of HIPAA enforcement, while meant to improve the speed of entry into telehealth, may be an unnecessary deregulation. For these reasons, Professor Blake argued that telehealth should be considered an additional service to in-person care, and not the sole tool in making healthcare services equally accessible.

JHLI Symposium 2021: Biohackers – Alex Pearlman by Reagan Airey

Alex Pearlman, a science and technology journalist and bioethicist, presented at the Jaharis Health Law Institute’s Symposium on April 29, 2021. Pearlman’s background is reporting on emerging issues in research, health policy and biotechnology and her work has appeared in numerous leading national and international media outlets, including Stat, New Scientist, MIT Technology Review, The Boston Globe and Vice. Pearlman works as a digital ethnographer and researcher in the Wexler Lab at the University of Pennsylvania Department of Medical Ethics & Health Policy, where she is studying ethical issues in the Community Biology movement during the COVID-19 pandemic. Pearlman also is a research affiliate with the Community Biotechnology Initiative at the MIT Media Lab, where she studies the intersection of the Community Biology movement with issues in ethics and policy, and she is working on the creation of a research ethics framework for use by independent community labs. For the symposium, Pearlman presented on biohackers.

A biohacker is “a do-it-yourself tinkerer, [o]ften participating in self experimentation, gene editing interventions, and agitating against the patent system.” These biohackers, driven by altruistic motives, have “hacked” certain elements of healthcare to provide cheaper options for medication. Some examples of this are the one hour at-home COVID-19 test, open insulin, and the EpiPencil, which is an off-the-shelf answer to increase in price of the EpiPen. Pearlman focused much of the presentation on Glybera, a gene therapy for LPLD, and its pirated counterpart. When Glybera first came on the market, it was the most expensive gene therapy ever at $1 million. Biohackers reverse engineered Glybera using published studies and named the product “Slybera.” Slybera has never been tested as no one will touch the hacked therapy. While biohackers raise many questions of ethics and standards, Pearlman asks, “if there are low cost alternatives, isn’t it in everyone’s best interest to get them resources?”