Catholic Health Services Provider Faces Lawsuit for Denying Transgender Surgery

Seventeen year old Paxton Enstad, a transgender male, sought chest-reconstruction surgery as part of his gender dysphoria treatment.  When his parents, Cheryl and Mark Enstad, sought to obtain pre-authorization for the surgery, PeaceHealth St. Joseph Medical Center, a Catholic organization, denied the services without offering a rationale as to why it was denied.

The Enstads filed suit in U.S. District Court, claiming that PeaceHealth’s refusal to cover the services violates the Affordable Care Act (“ACA”) and the State of Washington’s anti-discrimination laws.  Specifically, they claim that the refusal to authorize the surgery enforces gender stereotypes and amounts to gender discrimination.

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Read Complaint Here.

 

 

 

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Opinion: House Approves Bill that Defies Basic Standards of Medical Ethics

by Michael S. Dauber

On May 4th, 2017, the Republicans in the U.S. House of Representatives voted to pass the American Health Care Act, an Act that, if enacted into law, would repeal and replace many central elements of the Affordable Care Act, commonly known as Obamacare. The measure has received widespread criticism from many Democrats and from professional medical associations such as the American Medical Association and the American Cancer Society. Many people have questioned various parameters of the bill. This article questions it from an ethical perspective, and in particular, the potential consequences of abandoning health care protections designed under Obamacare to ensure that the most vulnerable people in society receive the care that they need.

The American Health Care Act would strip away protections that have facilitated access to care for pregnant women, patients with disabilities, patients that cannot otherwise afford health care, and patients with pre-existing conditions. While any attempt to discriminate against the sick and needy is unjustifiably wrong, the Act appears to directly target members of groups that are defined as most vulnerable and in most need of protection under most formulations of ethical practice.

For example, the Act would allow states to opt out of Obamacare requirements that prohibit insurers from charging patients with pre-existing conditions higher premiums for health insurance. It further classifies pregnant women, women who have had C-sections, and victims of domestic violence and sexual assault as patients with pre-existing conditions. It also targets elderly patients by allowing insurers to charge elderly patients up to five times as much as members of younger age brackets. Currently, under Obamacare, insurers cannot charge the elderly more than three times the amount they charge younger patients. The Act also includes plans to gradually eliminate $880 billion in Medicaid funding over the next ten years, funds that could have otherwise been utilized to extend coverage to low-income families.

In short, the Act specifically targets some of the most vulnerable members of society who might suffer immensely without health care and who may not be able to afford to pay the costs that many insurers may demand, or may be unable to pay for other essential expenses after paying their insurance premiums. Ahead of the vote in the House of Representatives, Senator Bernie Sanders called the Act “an abomination” and, in a CNN interview with Anderson Cooper, Sanders said, “thousands of Americans would die because they would no longer have access to health care.” Proponents of the Act argue that it is engineered to reduce the burdens of health care cost on the government and on insurers. Yet, the overall effect will be a higher cost for patients. Many patients will suffer and will lose their access to care because of circumstances beyond their control.

In this regard, the Act conflicts with basic principles of contemporary bioethics.  For instance, the Belmont Report (1979), as a blueprint for ethics in human subject research, stresses the importance of respect for the “dignity of persons” while ensuring protections in accordance with justice. The Belmont Report, though focused on ethics in human subject research, has become a defining document in the history of medical ethics, establishing a system in which patients must be respected and special protections must be given to members of vulnerable populations. If a patient falls into a protected class, health care providers have an ethical obligation to ensure that the patient receives the care he or she needs and that the patient is not denied care solely on the basis of disability, economic status, or prejudice against specific medical conditions.

There is an apparent conceptual link between commitment to protecting vulnerable populations in the clinical and research context and commitment to ensuring that vulnerable populations have access to care. The American Health Care Act has not yet become law. It must first obtain approval in the Senate and be signed by the President. Most recently, the Senate decided to modify the bill before voting on it and, as a result, the bill must be sent back to the House for a second vote. As the Senate prepares its own version of the bill, government officials should recognize that a policy that effectively precludes access to health care for members of vulnerable populations is unethical by virtually every principle of medical ethics.

FDA Takes the Advocates’ Advice: Approves Drug from Muscular Dystrophy

In an article dated September 19, 2016, Muscular Dystrophy patients and advocates, with the help of select members of Congress, celebrated the FDA’s approval of Eteplirsen, a drug manufactured by Sarepta Therapeutics for treatment of a type of muscular dystrophy that predominantly affects boys in their childhood. Advocates fought heavily for the approval even though there are limited clinical trials to confirm the drug’s effectiveness. While the drug may help up to 12,000 Americans affected by the disease, critics worry that the FDA has set a “dangerous precedent” by its decision.

From NYTimes.com, “F.D.A. Approves Muscular Dystrophy Drug That Patients Lobbied For”

Excerpt from article:

[I]t was taken as a deeply troubling sign among drug policy experts who believe the F.D.A. has been far too influenced by patient advocates and drug companies, and has allowed the delicate balance in drug approvals to tilt toward speedy decisions based on preliminary data and away from more conclusive evidence of effectiveness and safety. . .

To read full article:   F.D.A. Approves Muscular Dystrophy Drug That Patients Lobbied For

 

 

Minorities Underrepresented in Federal Regulations on Human Subject Research

“Redressing Past Wrongs: Changing the Common Rule to Increase Minority Voices in Research” (forthcoming, American Journal of Public Health) states that the underrepresentation of minorities in human subject research is particularly alarming because many diseases are more prevalent in minority populations, irrespective of age, gender or income. The article suggests that minority underrepresentation reflects minorities’ mistrust of the government, due, in part, to cases of abuse of minorities in human subject research; and, minorities’ comparative lack of access to health care, leading to fewer opportunities for minorities to participate in research.

The article was co-written by Bill Rencher, the health access program director of the nonprofit, Georgia Watch, and Leslie Wolf, Professor of Law at Georgia State University, and it appears in a special issue on the Ethics of Human Subjects Research in Minority Populations. The authors suggest that federal regulations be changed to protect minority populations as they protect prisoners, children and pregnant women.

Read more here.