Medicare Rights Center

The Medicare Rights Center (Medicare Rights) is a national, 501(c)(3) nonprofit consumer service organization with offices in New York City and Washington, DC. Medicare Rights works to ensure access to affordable health care for older adults and people with disabilities through counseling and advocacy, educational programs and public policy initiatives.

Founding and Early Years (1989-1999)

In June 1989, the Medicare Rights Center was founded as the Medicare Beneficiaries Defense Fund (MBDF) by Diane Archer. One of the first actions of the fledgling organization involved a lawsuit brought against the federal government on the grounds that the Medicare Explanation of Benefits (EOB) failed to mention limits on what a doctor may charge for a service or what a beneficiary must pay. The judge in the lawsuit noted that the EOB is “gobbledygook.” This same year, the National Consumer Helpline was born, run by one staff member (MBDF founder, Diane Archer) and one volunteer.

The following year, in 1990, MBDF began publishing consumer-oriented Medicare pamphlets explaining, for example, how to access the Medicare home health benefit and how to appeal a denial of coverage.

In the following years, with just around three staff, MBDF continued developing connections between its direct client work and its policy advocacy. The Clinton health plan proposal was introduced, providing a means for MBDF and other consumer groups to advocate for improvement of the Medicare program. An article was published in the Journal of Long-Term Home Health Care outlining eight issues facing people with Medicare based on counseling provided on MBDF’s helpline at this time.

In 1996, MBDF changed its name to the Medicare Rights Center, Inc. (Medicare Rights).

In 1997, with seven staff and 20 volunteers, Medicare Rights launched its first website. Also this year, the Balanced Budget Act of 1997 was enacted, introducing the Medicare + Choice program, the precursor to today’s Medicare Advantage program. With the development of a consumer education guide called “Let’s Learn Medicare”, Medicare Rights’ Education Department was born. As a response to the enactment of the Balanced Budget Act of 1997, Medicare Rights launched its first national education initiative,“HMO Flash,” an effort to increase public awareness of HMOs (health maintenance organizations) and help consumers choose plans that meet their needs. The project resulted in the development and broad dissemination of a comprehensive reference guide of Medicare HMOs and around 30 tip sheets to help beneficiaries choose a plan and appeal denials of care.

This same year, Medicare Rights also launched the first version of its website. At the time, this website housed all of Medicare Rights’ educational content and newsletters.

Organizational Growth & Development (2000-2010)

In 2000, Medicare Rights had a $1 million budget for the first time, owing in part to evolving foundation relationships, a strengthened earned income strategy, and the organization’s first-ever special event (10th anniversary), for which President Clinton provided a video. At the same time, the organization began to formalize its capture of consumer stories on the helpline, leveraging them to underscore the need for policy change and to educate consumers through presentations and newsletters. The following year, the Medicare Minute program (also known as Seniors Out Speaking) launched in Westchester County, New York.

With support from the Robert Wood Johnson Foundation, Medicare Rights forged the New York Medicare Savings Coalition to pursue advocacy to increase enrollment in Medicare Savings Programs (MSPs). An alliance today of over 150 community-based organizations, advocacy groups, and government agencies, the coalition and Medicare Rights had an initial early victory in 2002 successfully advocating for the elimination of the asset test for the Qualified Individual (QI) Medicare Savings Program.

In 2001, with a grant from the U.S. Department of Commerce, Medicare Rights built and launched a national, online compendium of answers to consumer and professional Medicare questions. During this period, Medicare Rights also launched its CityNET (City Network Education and Training) program to provide regular Medicare trainings to New York City professionals. In addition, Medicare Rights established a National Consumer Advisory Board to more effectively share the insurance experiences of beneficiaries and their families with media outlets and policymakers.

In 2003, Medicare Rights established its first office in Washington, DC. Medicare Rights also launched its Medicare/Medicaid Assistance Program (MMAP) to provide one-on-one assistance to clients at New York City community-based organizations in need of Medicare counseling and enrollment assistance. Later that year, Medicare Rights launched the Baltimore Project, which systematically linked helpline stories to needed policy reforms, and helped increase the organization’s visibility as a policy voice with the Centers for Medicare & Medicaid Services (CMS). Also this year, the Medicare Prescription Drug, Improvement, and Modernization Act (MMA) was enacted, paving the way for the Medicare Advantage program and the Medicare Part D drug benefit.

In 2005, the Medicare Part D drug benefit became available in the fall (with the first-ever Fall Open Enrollment Period running from November 2005 to May 2006), and Medicare Rights played a significant role in New York and nationally—through the new Managed Care Consumer Assistance Program (MCCAP)—in providing counseling and education around Part D benefits and options. Medicare Rights also became a policy voice around ways to improve Part D for beneficiaries and their families and to reduce Medicare Advantage and Part D marketing abuses.

In 2005, volunteers in the Medicare Minute program (known at the time as Seniors Out Speaking) received acknowledgement from the Westchester County Executive in New York, and the following year, in 2006, they were honored with the 2006 Westchester County Volunteer Spirit Award.

In 2007, Medicare Rights filed a lawsuit in the U.S. District Court of the Southern District of New York, Layzer v. Leavitt, to make the case that, in certain situations, Medicare Part D plans should cover a beneficiary’s prescriptions even when they are not specifically approved to treat particular conditions (i.e. they are “off-label”). In 2011, the Court ruled in the plaintiffs’ favor, making it easier for beneficiaries to appeal for coverage of off-label prescription drugs.

Thanks to ongoing advocacy by Medicare Rights and its New York State Medicare Savings Coalition, in 2008 New York eliminated the asset test for the SLMB and QMB Medicare Savings Programs. Today, New Yorkers can enroll in any MSP based on their income alone, without regard to assets. This same year, the Medicare Improvements for Patients and Providers Act (MIPPA) was enacted, providing federal funding for states to conduct outreach and enrollment activities to help ensure that people with Medicare are enrolled in the Part D Low-Income Subsidy (Extra Help) and Medicare Savings Programs.

Between 2008 and 2009, with support from the Jacob & Valeria Langeloth Foundation, Medicare Rights for the first time launched the Medicare Minute program in states outside of New York. Also during this time, Medicare Rights redesigned its Medicare/Medicaid Assistance Program (MMAP) as the Community Partners Program, aiming to provide a range of technical assistance to New York City organizations seeking to enroll more of their clients in Medicare low-income benefits. During this period, Medicare Rights also rebranded, improving the look and feel of its outreach and educational content and incorporating the tagline “Getting Medicare right” into all materials.

In 2009, Medicare Rights and the Food Bank for New York City secured a $1 million grant from the Fan Fox and Leslie R. Samuels Foundation to cross-enroll as many New Yorkers as possible in Medicare Savings Programs and the Supplemental Nutrition Assistance Program (SNAP, or Food Stamps). Also this year, Medicare Rights held a 20th anniversary gala honoring Drew Altman of the Henry J. Kaiser Family Foundation, among others.

This same year, Medicare Rights reorganized its Client Services department and overhauled its technology and protocol for capturing client data and stories. A new data-tracking system powered by Salesforce was introduced, and staff began to more systematically enroll helpline callers into Medicare low-income benefits.

Medicare Rights in the Age of Health Reform (2010-Present)

On March 23, 2010, the Patient Protection and Affordable Care Act (ACA) was enacted, promising to insure millions of uninsured and under-insured Americans and to introduce a variety of reforms to health insurance and care delivery, including reductions in over-payments to Medicare Advantage plans and new demonstration programs to better coordinate care for vulnerable populations. Medicare Rights began to advocate that new reforms benefitting the non-Medicare population are made available where possible to people with Medicare.

Also during this time, with support from the Atlantic Philanthropies, Medicare Rights further expanded the Medicare Minute program nationally, and simultaneously launched Medicare Advocacy Coalitions in targeted states to pursue a range of Medicare reforms. Medicare Rights also started to shape the proposed demonstrations to improve care coordination for New York’s dually eligible beneficiaries, which ultimately led to the launch in 2014-15 of New York’s Fully Integrated Dual Advantage (FIDA) program.

In February 2013,Medicare Rights submitted testimony to Congress urging lawmakers to reject Medicare redesign proposals that burden beneficiaries with added health care costs. This represents one of many policy actions taken in these years to protect Medicare from damaging cuts and shield beneficiaries from additional costs that many, living on fixed incomes, cannot afford. In this same year, Medicare Interactive received one million annual visits for the first time.

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