The Future of Medicaid – Implications for Patients and Action for Advocates

I had the privilege of talking with nearly 100 patient advocates recently about the Medicaid proposals under consideration in the House and Senate bills aiming to “repeal and replace” Obamacare. As part of a webinar series hosted by the Patient Advocacy Leaders Summit (PALS), a national initiative convened by The AIDS Institute, I presented ideas for ways patient advocates could continue to work on behalf of themselves and their members to communicate with elected officials and policymakers about the importance of Medicaid to their access to health care.

PALS introduced the webinar as follows:

“As Congress and the Administration continue to move toward efforts to repeal and replace The Affordable Care Act, Medicaid has emerged as one of THE major points of contention, with its future being widely debated. Revamping Medicaid would affect access to health care and services for millions, who represent some of the most vulnerable populations.

Both the House bill, The American Health Care Act (passed May 4), and the Senate Republican’s proposal, The Better Care Reconciliation Act of 2017 (released June 22), aim to reduce federal health care spending and cap Medicaid while shifting greater responsibility to the states. Both plans will cause millions of Americans to go without coverage and struggle with health care bills.

Our speakers will share their perspectives and insights regarding the future of Medicaid, implications for patients and what you as an advocate can do to make a difference as Medicaid, and our entire health care system, is being transformed.”

Alongside co-presenters, Candace DeMatteis, the Policy Director of Partnership to Fight Chronic Disease (PFCD) and Matt Salo, the Executive Director of the National Association of Medicaid Directors (NAMD), we underscored three central themes:

  1. Real people, with serious health care needs, will lose access to care;
  2. People who rely on Medicaid are people you know or encounter in your daily life; and
  3. Familiarity with Medicaid, through real-life stories, helps everyone understand how the program provides health care to those who need it most.

Real people will lose access to health care

Of the people who will be directly affected by the proposed reforms, many have serious health care needs. As we have explained in previous blogs, health care costs in the U.S. are highly concentrated. In 2012, the top 1% of spenders accounted for 22.7% of all U.S. health care expenditures, the top 5% of spenders accounted for 50% of expenditures, and the bottom 50% of spenders accounted for less than 3% of expenditures.

Medicaid has similarly concentrated health care costs. For example, as DeMatteis explained, people eligible for both Medicare and Medicaid (the “duals”), are 13% of Medicaid enrollees, but account for about 35% of program costs.

People who rely on Medicaid are people you know

Most people either know someone on Medicaid or have a frequent encounter with someone who relies on the program. Families USA created infographics providing examples of the types of people we all interact with who might benefit from the Medicaid expansion. Below is a portion of their infographic for Florida which clearly shows retail sales clerks, fast food workers, hotel desk clerks, library assistants and taxi drivers as just a few of the types of working adults whose income is low enough for them to qualify for Medicaid.

Familiarity with Medicaid and real-life stories are key

Salo, even with all of his deep expertise in the details of Medicaid, reminded patient advocates, and all of us what matters when talking about Medicaid. “You need to put a face on it,” he explained. In order to be effective advocates for patients as enormous Medicaid changes are being considered, it is essential to make this about real people, with real health care stories (sometimes horror stories!).

DeMatteis reminded the group of the “power of the anecdote,” to counter myths and false narratives, especially around who benefits from Obamacare.

My tips for advocates were similarly focused. To change people’s minds and to write better policy, we need to always keep in mind that this is about real people, first and foremost, with real health care needs. We built this system because a patient needed actual health care services. Let’s make sure that in our efforts to get rid of what isn’t working in Obamacare, we don’t throw the patient out with the repeal bathwater.