March 27, 2018
Via Electronic Submission: Regulations.gov
U.S. Department of Health and Human Services
Office for Civil Rights
Attention: Conscience NPRM, RIN 0945-ZA03
Hubert H. Humphrey Building
Room 509F
200 Independence Avenue, S.W.
Washington, D.C. 20201
RE: Public Comment in Response to the Proposed Regulation, Protecting Statutory Conscience Rights in Health Care RIN 0945-ZA03
The Center for Medicare Advocacy (Center) is pleased to provide comments in response to the request for public comment regarding the proposed rule entitled, “Protecting Statutory Conscience Rights in Health Care” published January 26. The Center, founded in 1986, is a national, non-partisan law organization that works to ensure fair access to Medicare and quality health care. At the Center, we provide education and advocacy on behalf of older people and people with disabilities to help secure fair access to necessary health care. We draw upon our direct experience with thousands of individuals to help educate policy makers about how their decisions affect the lives of real people. Additionally, we provide legal representation to ensure that people receive the health care benefits for which they are eligible, and the quality health care they need.
General Comments
As we stated in our comments to the Department of Health and Human Services Strategic Plan FY 2018-2022, HHS must undertake activities to identify and address health disparities with the ultimate goal of eliminating them. In activities spanning the Office for Civil Rights (“OCR”), Office of Minority Health, Office of Women’s Health, Administration for Community Living, as well as the Centers for Medicare & Medicaid Services, all of HHS’ endeavors must ensure that disparities are not heightened but are prevented. We once again encourage you to implement your programs in a way that addresses cultural competency, race, ethnicity, language, immigration status, age, disability, sex, gender identity and sexual orientation. The programs HHS administers must be unbiased, based on research, evidence, and medical and health-related facts, and must be responsive to individual patient and consumer needs and wishes. Services should be offered to all in accordance with their personal beliefs and convictions. The decision to obtain any health service, including reproductive health care, should remain with the individual.
The Department’s rushed rulemaking process failed to follow required procedures
The Department rushed to publish this rule without first publishing any notice regarding it in its Unified Regulatory Agenda, as is normally required. The failure to follow proper procedure reflects an inadequate consideration of the rule’s impact on patients’ health.
We continue to strongly urge all federal agencies to be transparent regarding opportunities for public comment and active in promoting such opportunities, in order to gather broad feedback from stakeholders and the general public.
Specific Comments
The Center believes a health care provider’s personal beliefs should not determine the care a patient receives. That is why we strongly oppose the Department’s proposed rule (“Proposed Rule”), which seeks to permit discrimination in all aspects of health care.[1]
The Proposed Rule seeks to unlawfully expand refusals to provide care by attempting to allow individuals and health care entities who receive federal funding to refuse to provide any part of a health service or program. In addition, the Proposed Rule unlawfully attempts to create new refusals. Such expansions exceed the Department’s authority; violate the Constitution; undermine the ability of states to protect their citizens; undermine critical HHS programs; interfere with the provider-patient relationship; and threaten the health and well-being of people across the country and around the world.
By issuing the Proposed Rule and creating a new division within the Office of Civil Rights – the new “Conscience and Religious Freedom Division” – the Department seeks to inappropriately use OCR’s limited resources in order to affirmatively allow institutions, insurance companies, and almost anyone involved in patient care to use their personal beliefs to deny people the care they need. For these reasons the Center calls on the Department and OCR to withdraw the Proposed Rule in its entirety.
Expanding religious refusals can exacerbate the barriers to care that LGBTQ individuals already face.
Every day too many LGBTQ people face discrimination and other barriers to accessing lifesaving care. These barriers are especially pronounced for transgender patients. The proposed regulation ignores the prevalence of discrimination and damage it causes and will undoubtedly lead to increased discrimination and flat-out denials of care for some of the most vulnerable members of our community. We all deeply value freedom of religion, but sweeping exemptions that obstruct access to care are a fundamental distortion of that principle.
LGBTQ people, women, and other vulnerable groups around the country already face enormous barriers to getting the care they need.[2] Accessing quality, culturally competent care and overcoming outright discrimination is an even greater challenge for those living in areas with already limited access to health providers. The proposed regulation threatens to make access even harder and for some people nearly impossible.
Patients living in less densely populated areas already face a myriad of barriers to care including less access to health insurance coverage, lower incomes, and lower rates of paid sick leave. This is in addition to the universal costs of transportation, taking time from work, and other incidentals that go along with obtaining care in the first place. For many, the sheer distance to a healthcare facility can be a significant barrier to getting care. For example, more than half of rural women live more than 30 minutes away from a hospital that provides basic obstetric care.[3] Patients seeking more specialized care like that required for fertility treatments, endocrinology, or HIV treatment or prevention are often hours away from the closest facility offering these services. For example, a 2015 survey of nearly 28,000 transgender adults nationwide found that respondents needed to travel much further to seek care for gender dysphoria as for other kinds of care.[4]
This means if these patients are turned away or refused treatment, it is much harder—and sometimes simply not possible—for them to find a viable alternative. In a recent study, nearly one in five LGBTQ people, including 31% of transgender people, said that it would be very difficult or impossible to get the health care they need at another hospital if they were turned away. That rate was substantially higher for LGBTQ people living in non-metropolitan areas, with 41% reporting that it would be very difficult or impossible to find an alternative provider.[5] For these patients, being turned away by a medical provider is not just an inconvenience: it often means being denied care entirely with nowhere else to go.
The Proposed carries severe consequences for patients and will exacerbate already existing inequities.
By expanding refusals of care the Proposed Rule will exacerbate the barriers to health care services patients need. It is evident that the harm caused by this Proposed Rule will fall hardest on those most in need of care by allowing individuals and health care entities to use their personal beliefs to dictate patient care. The Department should remember, under Executive Order 13563, an agency may only propose regulations where it has made a reasoned determination that the benefits justify the costs and where the regulations are tailored “to impose the least burden on society.”[6] The Proposed Rule plainly fails on both counts. Although the Proposed Rule attempts to quantify the costs of compliance, it completely fails to address the costs and burdens to patients who may be denied care and who then may incur and experience even greater social and medical costs.[7]
The Proposed Rule lacks safeguards to protect patients from harmful refusals of care.
The proposed regulation includes no limitations to its sweeping exemptions that would protect patients’ rights under the law and ensures that they receive medically warranted treatment. The expanded religious exemptions in the proposed regulations also conflict with many patient protections in federal laws like the Affordable Care Act (ACA) and the Emergency Medical Treatment and Active Labor Act. While protections under these laws are subject to religious exemptions provided under federal statute, they are not subject to exemptions whose scope goes beyond federal law—including many of the exemptions expanded in this rule. Additionally, the proposed regulation’s approach to religious exemptions—which appears to allow for no limitations even when those exemptions unjustifiably harm patients or employers—conflict with the well-established standard under other federal laws, like Title VII of the Civil Rights Act. Title VII ensures that employers can consider the effect that providing a religious accommodation would have on coworkers, customers, and patients, as well as factors like public safety, public health, and other legal obligations. A standard that appears to allow for none of these considerations, and instead appears to require broad, automatic exemptions, would create confusion and undermine the federal government’s ability to properly enforce federal laws.
The Proposed Rule attempts to inappropriately broaden religious exemptions in a way that can lead to dangerous denials of medically necessary treatments.
The Department and OCR are attempting to require a broad swath of entities to allow individuals to refuse “any lawful health service or activity based on religious beliefs or moral convictions (emphasis added).”[8] Read in conjunction with the rest of the Proposed Rule, it is clear this is intended to allow any entity involved in a patient’s care—from a hospital board of directors to the receptionist that schedules procedures—to use their personal beliefs to determine a patient’s access to care.
The Proposed Rule tramples on states’ and local governments’ efforts to protect patients’ health and safety, including their nondiscrimination laws.
The Department claims that its unwarranted new interpretations of federal law supersede laws passed by state and local governments to ensure patients’ access to health care. By claiming to allow individuals and institutions to refuse care to patients based on the providers’ religious or moral beliefs in such a sweeping way, the proposed rule creates conflicts with hundreds of state and local nondiscrimination laws around the country that apply to health care. It therefore is disingenuous for the Department to claim that the proposed rule “does not impose substantial direct effects on States,” “does not alter or have any substantial direct effects on the relationship between the Federal government and the States,” and “does not implicate” federalism concerns under Executive Order 13132.
The Proposed Rule will carry severe consequences for providers and undermine the provider-patient relationship
The Proposed Rule threatens informed consent, a necessary principle of patient-centered decision-making intended to help balance the power dynamics between health providers and patients and ensure patient-centered decision-making.[9] Informed consent requires providers disclose relevant and medically accurate information about treatment choices and alternatives so that patients can competently and voluntarily make decisions about their medical treatment or refuse treatment altogether.[10] By allowing providers, including hospital and health care institutions, to refuse to provide patients with information, the Proposed Rule makes it impossible for patients to have full information regarding treatment options. While the Department claims the Proposed Rule improves communication between patients and providers, in truth it will deter open, honest conversations that are vital to ensuring that a patient can control their medical circumstances.[11]
The Department is abdicating its responsibility to patients
The Proposed Rule exceeds OCR’s authority by abandoning OCR’s mission to address health disparities and discrimination that harms patients.[12] Instead, the Proposed Rule appropriates language from civil rights statutes and regulations that were intended to improve access to health care and applies that language to situations for which it was not intended. By taking the language of civil rights laws and regulations out of context, the Proposed Rule creates a regulatory scheme that is not only nonsensical but is affirmatively harmful.
The Department, including OCR, has an important role to play in ensuring equal opportunity to access health care and ending discriminatory practices that contribute to poor health outcomes and health disparities.[13] If finalized, however, the Proposed Rule will represent a radical departure from the Department’s mission to combat discrimination, protect patient access to care, and eliminate health disparities. Through robust enforcement of civil rights laws, OCR has worked to reduce discrimination in health care by ending overtly discriminatory practices such as race segregation in health care facilities, segregation of people with disabilities in health care facilities, categorical insurance coverage denials of care for transition-related care, and insurance benefit designs that discriminate against people who are HIV positive, among other things.[14]
OCR must work to address these disparities, yet the Proposed Rule seeks to prioritize the expansion of existing religious refusal laws beyond their statutory requirements and create new religious exemptions where none had previously existed. A better use of OCR’s limited resources would be to protect patient access to health care. The Proposed Rule will harm patient care and is antithetical to OCR's mission—to eliminate discriminatory practices that contribute to persistent health inequality.[15]
In addition, the Proposed Rule fails to address treatment of patients facing emergency health situations. The Emergency Medical Treatment and Active Labor Act (“EMTALA”) requires hospitals that have a Medicare provider agreement and an emergency room or department to provide to anyone requesting treatment an appropriate medical screening to determine whether an emergency medical condition exists, and to stabilize the condition or if medically warranted to transfer the person to another facility.[16] Under EMTALA every hospital is required to comply – even those that are religiously affiliated.[17] Because the Proposed Rule does not mention EMTALA or contain an explicit exception for emergencies, some institutions may believe they are not required to comply with EMTALA’s requirements. This could result in patients in emergency circumstances not receiving necessary care.
Implement the Affordable Care Act
The Affordable Care Act has done much to reduce disparate access to care in our nation’s health care system. We must note that the ACA is the law of the land, and the Administration is legally obligated to implement the law.
Unfortunately, we have watched as the Administration cut the last enrollment period in half; slashed funding for enrollment assistance and advertising; refused to participate in enrollment events; shut down healthcare.gov during critical times; and issued regulations to allow the sale of “junk” plans (such as Association Health Plans and Short-Term, Limited Duration Policies). The repeated attempts to undermine our nation’s health care system must end. All Americans deserve access to affordable, quality health coverage.
Conclusion
The Proposed Rule will allow religious beliefs to dictate patient care by unlawfully expanding already harmful refusals of care. The Proposed Rule is discriminatory, violates multiple federal statutes and the Constitution, ignores congressional intent, fosters confusion, and harms patients contrary to the Department’s stated mission.
We appreciate the opportunity to submit these comments. For additional information, please contact David Lipschutz, Senior Policy Attorney (licensed in CA and CT), at dlipschutz@medicareadvocacy.org, or 202-293-5760.
[1] Protecting Statutory Conscience Rights in Health Care; Delegations of Authority, 83 Fed. Reg. 3880 (proposed Jan. 26, 2018) (to be codified at 45 C.F.R. pt. 88) [hereinafter Rule].
[2] See, e.g., Institute of Medicine, The Health of Lesbian, Gay, Bisexual, and Transgender People: Building a Foundation for Better Understanding (2011), http://www.iom.edu/Reports/2011/The-Health-of-Lesbian-Gay-Bisexual-and-Transgender-People.aspx; Sandy E. James et al., The Report of the U.S. Transgender Survey 93–126 (2016), www.ustranssurvey.org/report; Lambda Legal, When Health Care Isn’t Caring: Lambda Legal’s Survey on Discrimination Against LGBT People and People Living with HIV (2010), http://www.lambdalegal.org/publications/when-health-care-isnt-caring; Shabab Ahmed Mirza & Caitlin Rooney, Discrimination Prevents LGBTQ People from Accessing Health Care (2016), https://www.americanprogress.org/issues/lgbt/news/2018/01/18/445130/discrimination-prevents-lgbtq-people-accessing-health-care.
[3] American College of Obstetrics and Gynecologists, Health Disparities in Rural Women (2014), https://www.acog.org/Clinical-Guidance-and-Publications/Committee-Opinions/Committee-on-Health-Care-for-Underserved-Women/Health-Disparities-in-Rural-Women#17.
[4] Sandy E. James et al., The Report of the U.S. Transgender Survey 99 (2016), www.ustranssurvey.org/report
[5] Shabab Ahmed Mirza & Caitlin Rooney, Discrimination Prevents LGBTQ People from Accessing Health Care (2016), https://www.americanprogress.org/issues/lgbt/news/2018/01/18/445130/discrimination-prevents-lgbtq-people-accessing-health-care.
[6] Improving Regulation and Regulatory Review, Executive Order 13563 (Jan. 18, 2011), https://obamawhitehouse.archives.gov/the-press-office/2011/01/18/executive-order-13563-improving-regulation-and-regulatory-review.
[7] See Rule supra note 1, at 94-177.
[8] See id. at 12.
[9] See Tom Beauchamp & James Childress, Principles of biomedical ethics (4th ed. 1994); Charles Lidz et al., Informed consent: a study of decisionmaking in psychiatry (1984).
[10] See id.
[11] See Rule supra note 1, at 150-151.
[12] OCR’s Mission and Vision, Dep’t of Health and Human Servs. (2018), https://www.hhs.gov/ocr/about-us/leadership/mission-and-vision/index.html (“The mission of the Office for Civil Rights is to improve the health and well-being of people across the nation; to ensure that people have equal access to and the opportunity to participate in and receive services from HHS programs without facing unlawful discrimination; and to protect the privacy and security of health information in accordance with applicable law.”).
[13] As one of its first official acts in 1967, the Office of Equal Health Opportunity undertook the massive effort of inspecting 3,000 hospitals to ensure they were complying with Title VI’s prohibition against discrimination on the basis of race, color, or national origin. 42. U.S.C. § 2000d (1964). After this auspicious start, the Office of Equal Health Opportunity which would eventually become OCR would go on to ensure that health programs and activities it regulated complied with key anti-discrimination laws including Section 504 of the Rehabilitation Act of 1973, 29 U.S.C. § 794 (1973), Title IX of the Education Amendments of 1972, 20 U.S.C. § 1681 (1972), the Age Discrimination Act of 1976, 42 U.S.C. § 6101 (1976), and Section 1557 of the Affordable Care Act, 42 U.S.C. §18116 (2010), among others. Through robust enforcement of these laws, OCR has worked to reduce discrimination in health care.
[14] See, e.g., Serving People with Disabilities in the Most Integrated Setting: Community Living and Olmstead, Dep’t of Health and Human Servs. (2018), https://www.hhs.gov/civil-rights/for-individuals/special-topics/community-living-and-olmstead/index.html; Protecting the Civil Rights and Health Information Privacy Rights of People Living with HIV/AIDS, Dep’t of Health and Human Servs. (2018), https://www.hhs.gov/civil-rights/for-individuals/special-topics/hiv/index.html; National Origin Discrimination, Dep’t of Health and Human Servs. (2018), https://www.hhs.gov/civil-rights/for-individuals/special-topics/national-origin/index.html; Health Disparities, Dep’t of Health and Human Servs. (2018), https://www.hhs.gov/civil-rights/for-individuals/special-topics/health-disparities/index.html.
[15] See supra note 46.
[16] 42 U.S.C. § 1295dd(a)-(c) (2003).
[17] In order to effectuate the important legislative purpose, institutions claiming a religious or moral objection to treatment must comply with EMTALA, and courts agree. See, e.g., Shelton v. University of Medicine and Dentistry of New Jersey, 223 F.3d 220, 228 (3rd Cir. 2000); In In re Baby K, 16 F.3d 590, 597 (4th Cir. 1994); Nonsen v. Medical Staffing Network, Inc. 2006 WL 1529664 (W.D. Wis.); Grant v. Fairview Hosp., 2004 WL 326694, 93 Fair Empl. Prac. Cas. (BNA) 685 (D. Minn. 2006); Brownfield v. Daniel Freeman Marina Hosp., 208 Cal. App. 3d 405 (Ca. Ct. App. 1989); Barris v. County of Los Angeles, 972 P.2d 966, 972 (Cal. 1999).