Julianna Snow, a 5 year old girl who suffered from an incurable neuromuscular disease, died on June 14, 2016 after a long, hard fight that sparked a great deal of debate among bioethicists. Julianna was diagnosed at 2 years old with Charcot-Marie-Tooth disease, and by 4 years old she could not use her arms or legs and had to use a feeding tube. However, the effects of her illness were only physical and not mental. After being in and out of the hospital, Julianna’s parents were informed they would need to make extremely difficult medical decisions the next time Julianna got an infection that would make it hard for her to breathe. Even though Julianna was only 4 years old, her parents decided to include her in such medical decisions. To honor her wishes to “go to heaven” and not go back to the hospital, her parents decided to care for Julianna in the comfort of her own home.
This decision was highly criticized by some who believed Julianna’s parents “painted a coercive picture” to influence their daughter’s decision to “go to heaven.” Bioethicist Arthur Caplan, for example, argues that a 5 year old child is incapable of making this kind of decision especially in light of the case of Cassandra C., a 17 year old girl who refused chemotherapy but was mandated to receive treatment when a court concluded she lacked capacity to make such decision. Yet, the doctors who were most involved in Julianna’s care supported her parents’ decision. Even Bioethicist Arthur Caplan admitted after meeting Julianna that “she taught [him] and others that even a child can become very knowledgeable about a challenging illness and can convey thoughtful and remarkable feelings about her illness and her ideas.”
Julianna received hospice care for the last 18 months of her life and in that time she celebrated her fifth birthday as a princess. She died in her mother’s arms at home in her princess room.
Nat Turner, along with his former University of Pennsylvania classmate Zach Weinberg (the pair previously founded the tech firm Invite Media that was eventually purchased by Google for $81 Million), created Flatiron Health. The company began collecting data on cancer treatments with the purpose of creating a database focused on providing doctors and cancer centers with helpful cancer treatment data.
Flatiron, now up and running for two years, charges cancer centers for access to its database and they contribute specifics about actual cancer cases, with patients’ personal information redacted. The information includes course of treatment prescribed, and the outcome.
It is common to find medical institutions that offer medical services geared specifically for women. However, the industry has been silent concerning the specific medical needs facing men… until recently.
Within the last couple of years, medical institutions devoted to men have been popping up all around the country. The new clinics are aware of the lengths to which men will go in order to avoid the doctor and have tailored their marketing and treatments accordingly. The clinics market themselves as “luxury spas” and use slogans like: “It’s the gentlemen’s club your wife would approve of.” The treatments range from those focused on vanity, such as hair removal, to more serious matters such as prostate exams.
Supporters of male-focused clinics think that by giving men a comfortable place to receive not-so-serious treatments, the clinics will lead to men more often receiving care for serious conditions such as prostate cancer. Those opposed feel that clinics like these may over-treat and result in more damage than benefit to men’s health.
Anti-fetal homicide laws were enacted originally to protect mothers of unborn children against violent acts. Yet, in reality, “they’ve led to disproportionate prosecution against African American women who suffer miscarriages.” An ongoing case in Mississippi could set a dangerous precedent with regard to the criminalization of pregnant women for their purportedly reckless acts. Rennie Gibbs was charged with the murder of her unborn child after it was stillborn when she was 16 years old. Gibbs is being prosecuted for “depraved heart murder” because the autopsy showed that Gibbs had used cocaine during her pregnancy—but the cause of death was originally attributed to the umbilical cord being wrapped around the infant’s neck. That cause of death was never ruled out.
Health care delivery is undergoing a major change in the United States, and it is happening with little fanfare, due to the fervent debate over the viability of the Affordable Care Act (ACA). Hospital systems, such as Mt. Sinai in New York, are cutting out the middle man when it comes to insurance coverage, in order to retain more profits from services provided. Mt. Sinai, located in New York, is an example of a hospital system that is providing its own insurance options to patients who receive treatment within the system.
Both non-profit and for-profit hospitals can benefit from implementing such programs, as there are certain services that are not economically sustainable, but must be accessible to the public. For example, psychiatric care does not generate a lot of revenue, but is a necessary and important service. Ezekiel Emanuel was one of the creators of the ACA, and is chairman of the Department of Medical Ethics and Health Policy at the University of Pennsylvania. He states that “the wave of the future is integrated delivery systems—integrating insurance with the delivery function.”
In 1990, Congress approved the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act. The CARE Act funds support and medical treatment for individuals with HIV. However, under the Act every state had to certify that it had criminal laws that would prosecute individuals with HIV who knowingly exposed others to the disease, even if those exposed did not contract HIV. Individuals who are successfully prosecuted under these laws are listed as sex offenders. In one case in Iowa, a woman was prosecuted successfully even though she claimed that she informed the man that she was HIV positive. He claimed she did not tell him; however, two weeks prior to filing his complaint against her, he was convicted of domestic abuse for hitting her. She is now listed as a sex offender.
Currently, the federal government and advocates consider these HIV-specific laws to be draconian in light of modern scientific knowledge regarding HIV, which is “no longer the death sentence it once was.” Many of these HIV-specific laws do not require exposure in the form of sexual contact, and some even include exposure in the form of something as innocuous as spitting. HIV cannot be transmitted through saliva. Some states, including Iowa, are reconsidering and changing their HIV-specific laws in response to this change in public opinion.
The Center for Medicaid and Medicare Services (CMS) administrator, Marilyn Tavenner, stated in a letter to Congress that Medicare Part D is working well, and a proposed rule change, which would have “substantially reduced patient choice,” is unnecessary. The Senate Finance Committee stated that, at present, the cost of the program is 45% below the projections of the Congressional Budget Office. In addition, Part D enjoys a 90% satisfaction rate by its beneficiaries. Under the Affordable Care Act the cost of Medicare Part D premiums has remained low, but the quality of care has improved. However, Ms. Tavenner wrote also that opportunities exist to improve the program, and CMS will continue to review Part D policies periodically.
JAMA Internal Medicine published a research letter by authors J. Eric Oliver, PhD and Thomas Wood, MA, which indicates that almost half of the nation believes in at least one health conspiracy. For example, thirty-seven percent of Americans believe that the Food and Drug Administration is concealing natural cures for cancer in response to industry pressure from pharmaceutical companies. The authors conducted an online survey of 1,351 adults; the survey posited four health conspiracy theories. Forty-nine percent of those polled indicated that they believe at least one of the proposed theories, and eighteen percent believe in at least three. According to Oliver, the takeaway from the survey “is that people who embrace these conspiracies are very suspicious of traditional evidence-based medicine.
Recently, the CDC confirmed that females are capable of transmitting HIV to their female sex partners. Female to female transmission of HIV has been difficult to prove, though there have been reports of its occurrence in the past. Most often, this mode of transmission is difficult to substantiate because researchers are unable to rule out other risk factors, such as intravenous drug use or sexual contact with males. However, a recent case study of two women in a monogamous relationship, who did not have a history of intravenous drug use, allowed the researchers to rule out the more common risk factors. The CDC states that though this mode of transmission is rare, everyone should take appropriate preventative measures to guard against HIV.
Florida is one of the twenty-four states that declined to expand their Medicaid programs. As a result, approximately 760,000 Florida residents who would qualify for Medicaid under an expanded Medicaid program do not qualify so qualify. In addition, these residents do not qualify for federal subsidies to help them purchase health insurance. Recently, some Florida legislators honed in on an obscure provision in the Affordable Care Act, which allows low-income documented immigrants to qualify for federal subsidies in order to buy health insurance. The legislators intend to publicize this information in an effort to get the Medicaid expansion approved during the next legislative session. Republican state Sen. Rene Garcia of Hialeah stated that the issue is one of “fairness,” and not immigration.