ACA Protects People with Chronic Conditions Against Discrimination in their Health Coverage

CID-NYGuest blog by Heidi Siegfried, Project Director at New Yorkers for Accessible Health Coverage (NYFAHC) and Health Policy Director, Center for Independence of the Disabled. A few days ago, Health Affairs published an article that highlighted how the non-discrimination provisions of the Affordable Care Act (ACA), Section 1557, can protect consumers against benefit designs that discriminate against people with chronic conditions or significant health needs.

New York has long prohibited denial of coverage or premium variation based on health status and the ACA now prohibits charging higher premiums or denying coverage for people with pre-existing conditions. Still, network and formulary designs can have the effect of discriminating against people with serious illnesses and disabilities.

People often overlook the fact that Section 1557 prohibits discrimination based on disability status as well as race, color, national origin, sex, and age.  HCFANY and NYFAHC submitted comments to the U.S. Department of Health and Human Services (HHS) on the proposed rules for Section 1557 in November 2015. In these comments, we asked HHS to specifically define discriminatory benefit design in the regulations implementing Section 1557 and to include all beneficiaries with chronic conditions or serious illnesses.  Although HHS did not provide a definition, they do consider benefit design discrimination on a case-by-case basis and will review complaints of disability-based discrimination. HHS also provides examples of potentially discriminatory benefit designs such as placing all HIV drugs on the highest tier.

The Health Affairs article points out that the Americans with Disabilities Act was amended to define disability as an impairment of major bodily functions such as immune system, normal cell growth, digestive, bladder, neurological, respiratory, and endocrine systems which would reach many people with chronic conditions.  Therefore, when consumers encounter discriminatory formularies, coverage limitations, or plans that exclude certain specialists, they can use Section 1557 to enforce their rights to non-discriminatory benefit design by filing complaints with the Office of Civil Rights at HHS or by challenging the plans in court.


Two weeks ago, children’s health advocates from across the country came together in Washington, DC for the Georgetown University Health Policy Institute Center for Children and Families Annual Conference. The conference provides an excellent opportunity for national and state advocates to share their experiences and learn from one another. This year’s conference theme was “Clear Skies or Foggy Times Ahead for Child and Family Coverage?” Topics included the future of children’s health coverage, strengthening and expanding Medicaid, and improving the quality and delivery of children’s health services.

We heard from experts in the field about the impact of perception, race, and bias on Medicaid, avenues for improving network adequacy, and the final Medicaid managed care regulations and what they mean for children and families.

HCFANY’s Children, Youth, and Families Task Force represented New York consumer advocates at the conference. HCFANY’s Elisabeth Benjamin, Vice President of Health Initiatives at the Community Service Society of New York, spoke on a panel that explored the means by which advocates can work to improve access to care in both public and private coverage programs.

CHP Picture

Last week, The Atlantic published an article entitled “The Unconscionable Difficulty of Getting Health Insurance for a Newborn.” The article tells the story of contributing writer Ester Bloom and her difficulties getting immediate Child Health Plus (CHP) insurance coverage for her newborn son. Coverage for Bloom’s son did not begin until six weeks after his birth, and in the interim she instead had to pay for much more expensive individual coverage through the Marketplace.

However, the original article neglected to mention the passage of Bill S4745/A7155 in December of 2015, which allows babies born into low and middle-income families eligible for Child Health Plus from the day they are born. Under this law, which takes effect January 1, 2017, parents who apply before the baby is born, or within 60 days of birth, will have CHP coverage for the newborn from the date of birth. Those who submit an application more than 60 days after the birth will be covered from the date of application. This law addresses the 45 day gap between parent application and newborn enrollment in CHP that Bloom describes in the article. For more details please see HCFANY’s original blog post from December 28, 2015.

We were excited to see a correction published on June 21, which included information about the law and how it will improve coverage for newborns under CHP.

This article also highlights the many challenges that consumers face when navigating the health insurance system as well as the importance of the trained assistance that health care Navigators, Certified Application Counselors, and Community Health Advocates can provide. New York State has been a leader in offering consumer assistance through these programs.

Parents who would like to enroll a child in CHP can do so through the New York State of Health Marketplace or by connecting to the Community Service Society Navigator Network at (888) 614-5400 or through their website.



Kid Broken Leg

(National Library of Medicine)

 By: Andrew Leonard, Senior Health Policy Associate, Children’s Defense Fund – New York

Children’s Defense Fund and other HCFANY members are monitoring health transformation in New York State and looking for ways that stakeholders can get involved. Part of that work is thinking about how different groups will be affected. In this post, and in this new fact sheet, I look at children’s health care.

As children’s health advocates, it is important to ensure that health transformation efforts reflect the unique health care needs of children.  Although children tend to be healthier on average than adults, young New Yorkers receive the same inefficient and sometimes ineffective care as adults. Not surprisingly, the most common diagnoses associated with pediatric hospitalizations in New York State are issues that providers can better manage through a preventive approach in a primary care setting – conditions like asthma, bronchitis, and mood disorders.  Done properly, health transformation could create a system that is much more focused on that preventive care.

Advocates have to pay attention and get involved to make sure transformation occurs in a way that works for children. We’ve developed seven guiding principles that can help advocates make this happen.  Those principles are:

  1. Parents and children should be able to choose providers and health care services based on quality and their own preferences.
  2. All children should receive regular health care through a patient-centered medical home that integrates primary and behavioral health care.
  3. Children should have access to an adequate number of primary care and specialty providers who are geographically accessible and in their health insurance networks.
  4. Financing typically restricted to medical services should be expanded to fund services that address the social determinants of health.
  5. Children’s health care should be both linguistically and culturally competent.
  6. Payment and delivery system reforms must promote transparency, actively engage all parents and children and equip them to make decisions about their own care.
  7. Payment and delivery system reforms should utilize appropriate reimbursement levels for pediatric service delivery and incorporate child-specific outcomes measures when evaluating the success of these initiatives.

Keep an eye out for more HCFANY publications about health transformation, including a set of general principles later this week and fact sheets about how transformation could affect health care for women and the LGBTQ community. You can also watch a webinar with more information about children and health transformation at this link.