Last week, I had the privilege of attending the United Hospital Fund’s 2016 Medicaid Conference in New York City. This year’s conference focused on ongoing efforts in New York’s Medicaid program to develop delivery and payment systems that reward value instead of volume. New York has an innovative waiver that enables the state to reinvest $8 billion in federal savings generated by Medicaid Redesign Team (MRT) reforms. The goal of the waiver is to address critical issues throughout the state’s Medicaid program and allow for comprehensive reform through a Delivery System Reform Incentive Payment (DSRIP) program. Under the DSRIP program, funds for providers are tied to meeting a set of specified performance metrics.

As consumer advocates, we often have to fight to get the consumer viewpoint integrated into programs like Medicaid. Throughout the conference, panelists challenged audience members to build programs that truly consider the unique needs of Medicaid consumers.

One of the most compelling panels focused on engaging and protecting Medicaid members. The three-member panel included Christina Jenkins (President and CEO of OneCity Health), Rebecca Novick (Director of the Health Law Unit, Legal Aid Society) and Harvey Rosenthal (Executive Director of the New York Association of Psychiatric Rehabilitation Services). The panelists focused on transforming provider/patient relationships by training providers on motivational interviewing, building trust between providers and consumers, and using community health workers and peer counseling.

All three panelists agreed that Medicaid programs must look beyond the physical aspects of health care and seek to address beneficiaries’ behavioral health and social service needs. Dr. Jenkins recommended establishing formal contracts with community-based organizations. Another theme of the panel was the need for trust and empathy between providers, frontline staff and patients. For example, Mr. Rosenthal discussed the need to train frontline workers on meaningfully engaging with their patients and not just focusing on hitting the required benchmarks. Ms. Novick emphasized the need to change the current adversarial relationship many providers and Medicaid patients have with one another through long-term relationship efforts and practices that reach beyond just treating health symptoms.

The DSRIP program enables states like New York an opportunity to build a more person-centered culture of care. The panel highlighted some strategies that can be employed to build a health system that focuses on the whole person, providing a range of coordinated services that can best match her or his goals, values and preferences. When a health system embraces this mindset, improved quality of life for consumers and lower overall costs will generally follow. And that’s what we call value.

Stephanie Cohen, State Advocacy Manager, Value Advocacy Project


Last year, the Robert Wood Johnson Foundation launched a joint initiative with Community Catalyst called the Value Advocacy Project (VAP). The project is supporting consumer health advocacy organizations in six states in their non-lobbying advocacy efforts to pursue local and state policy and health system changes that increase the value of health care by improving health outcomes and lowering health care costs, especially for populations that have disproportionately poor outcomes. Building on the Center for Consumer Engagement in Health Innovation’s recently released Consumer Policy Platform for Health System Transformation, we will be highighting our state partners working on issues outlined in the policy platform and encouraging them to share how their work can translate to advocates’ efforts across the country.

Minnesota is one among a handful of states leading the nation in public and private exploration of health system transformation and consumer advocates have the opportunity - and the urgent need - to embed consumer engagement and priorities in the “Minnesota Model.” Our Valuing Health project is helping these advocates be more effective participants at the multi-stakeholder tables working to define and implement the next generation of Minnesota’s health system through innovative approaches.

In many ways, Minnesota is a leader in value-based purchasing and health system transformation.

Minnesota has fully expanded Medicaid, created the nation’s first Basic Health Plan (BHP) and has significant state-driven investment in health system transformation. For example, in recent years, the Minnesota Department of Human Services has increased outcome-based payment in contracts for public health care programs, developed pilot Accountable Care Organizations (ACOs) called Integrated Health Partnerships (IHPs) in our public programs and is in year three of a federal State Innovation Model (SIM) grant to expand ACOs across the state.

But consumers have not been significantly engaged in the design of these changes as compared to big payers such as the state, insurance carriers and large employers. This is partially due to a lack of opportunities, but also reflects a lack of internal capacity. The work to defend and expand basic access to health care programs and insurance has often eclipsed the time and resources necessary to engage in the myriad simultaneous experiments and explorations in health system transformation.

The gains in access afforded by the Affordable Care Act have created a little more breathing room to dive into these issues, as well as a lot of urgency. The level of public subsidies going to private insurance companies and HMOs is unprecedented and growing, nationally as well as in Minnesota. We and other advocates are hungry to advance our stewardship of those public resources, as well as our commitment to wresting quality care and healthier outcomes from public and individual dollars. The Value Advocacy Project (VAP) is allowing that work to move forward.

Last year, Minnesota launched a Health Care Financing Task Force that brought together consumer advocates, providers, the insurance industry, and elected and appointed officials to explore and make recommendations on key issues in health policy. Before the Value Advocacy Project began (and with separate funding), TakeAction worked to make sure there were multiple dedicated consumer seats on the Task Force, and that its central charge was a consumer priority to “increase access to and improve the quality of health care for Minnesotans.” Through the VAP project, we launched a learning community of advocacy organizations to provide the research, education and support that is often missing for consumer representatives on these sorts of bodies.

As a direct result of this collaboration, our final Task Force recommendations include many consumer priorities that were just not part of the policy conversation prior to the Task Force and a set of consumer protections related to value-based purchasing (VBP) and expansion of successful VBP strategies that we as an advocacy community had not previously weighed in on in a meaningful way. For example, the Task Force recommended that Minnesota: apply for a 1332 waiver to expand MinnesotaCare (our Basic Health Plan) to people with incomes up to 275 percent of the Federal Poverty Level; include undocumented residents in Medicaid and MinnesotaCare; evaluate all current value-based purchasing, accountable care, and care coordination demonstrations, pilots and programs for effectiveness in areas such as improving health disparities, patient choice and provider attachment, and multi-payer alignment. (See the full recommendations here). We are now in a much stronger position internally and in the policy landscape to include a consumer agenda in the state’s value-based efforts.

A key component of Valuing Health is our partnership with Waite House and others in the immigrant advocacy community to understand the health and value priorities of that portion of the uninsured population who are barred from many avenues to health coverage due to their immigration status. Waite House is a community-based center that offers basic needs, self-sufficiency, youth and civic engagement programming in a diverse neighborhood of South Minneapolis. They have also begun extending their community outreach into several growing Latino communities in Greater Minnesota (beyond the Twin Cities).

Because coverage for non-citizens who are currently excluded would likely be paid for almost entirely with out-of-state dollars, there is interest in leveraging value-based models to get the most cost-effective coverage for this population. Additionally, because racial disparities have persisted in public programs for even those who are covered, we want to prioritize engagement of the affected communities early and often in program design. Waite House is leading that work through community conversations that connect real experiences seeking health care to the larger conversations happening in the state. Through Valuing Health, we will continue our partnerships and learning community to connect consumer advocates and on-the-ground consumer expertise to the further development and evaluation of value-based care in Minnesota. We look forward to sharing from our experience and learning from leaders in other states along the way.

Sarah Greenfield, Former Health Care Program Manager, TakeAction Minnesota

It was a big week for reflecting on the accomplishments of, and challenges facing, the ACA and the U.S. health care system. President Obama released an article in JAMA summarizing what the ACA has achieved to date, and where health policy needs to go in the years ahead. Politico also did a special issue on the achievements, challenges and politics of health reform, and in Health Affairs, the CMS Office of the Actuary released new forecasts on health spending.


Here are some of the key takeaways:

The President's Agenda

In his JAMA article, the president outlined a five-part agenda for health reform going forward: closing the Medicaid coverage gap in the remaining 19 states; reforming the delivery of health care; improving affordability; strengthening the Marketplaces; and, reining in drug prices. Before delving into these, it is important to flag what feels like the big miss in this agenda: addressing health disparities.  

Despite the progress made by the ACA, life expectancy, health status and even access to health care remain greatly affected by the interlocking factors of race, class and geography. While the U.S. spends far more than other developed countries on medical care, it invests less in policies and programs that maximize health in the first place. Of course, it is not possible to address every health-related topic in a single article, but given that the president still commands the bully pulpit, the failure to highlight this issue seems like a missed opportunity.

Closing the Coverage Gap

President Obama called on the remaining 19 states to take advantage of the almost-full federal financing to extend Medicaid to all low-income adults. However, Politico's survey of health care "experts" projected that getting to 100 percent could take as long as 10 years. That said, if Hillary Clinton becomes the next president, the pressure on states to take the federal money is sure to increase. That’s not because Clinton will be any more popular or persuasive than President Obama, but because a Clinton win would place the final nail in the "repeal" coffin. At the same time, the economic and moral case for closing the gap will continue to strengthen as both the positive effects of coverage and the consequences of failure to cover become ever clearer. (For example, see this new report on closing the gap and infant mortality in North Carolina, as well as the cross-state comparison between Tennessee and Kentucky.)

Affordability – It’s Not Just About the ACA (and It's Not Just About the Federal Government)

President Obama called for stepped-up efforts to educate people about the availability of financial assistance under the ACA, as well as for increasing the amount of financial assistance. But clearly advocates have more work to do to educate policymakers about the need to take action to address affordability problems. In response to a question about affordability, Secretary Burwell mainly talked about cost containment and stabilizing the Marketplace risk pool. These are important topics, but not really answers for people struggling to pay premiums and out-of-pocket costs. And while the share of health expenditures paid out of pocket  may be flat as a percentage of total health spending, the shift from copayments to deductibles has made budgeting for health care spending harder. And with wages stagnant, out-of-pocket costs are taking a bigger bite out of family budgets even if they don't represent a bigger share of total health spending.
Most importantly, out-of-pocket health spending is an issue that concerns far more people than are covered on the ACA Marketplaces. Any solution to the affordability issue is going to have to look beyond the current universe of people eligible for cost-sharing assistance. Realistically, given Congressional gridlock, advocates will need to look to a combination of administrative and state action to make any progress on this issue in the near term.

Marketplaces – What's Really Going On?

Perhaps the greatest contrast between the picture of the ACA painted by the administration and the one painted by Politico lies in their depiction of the Marketplaces. The President points out that 88 percent of enrollees live in counties with at least three insurers, and Secretary Burwell notes most people can find a plan with a premium of $75 per month or less. But Politico writes about insurers losing money and co-ops collapsing. The truth is that, for a variety of complex reasons, many insurers miscalculated the cost of Marketplace coverage. As a result, premiums are likely to increase more in 2017 than they have in recent years. The good news is that with health care cost growth expected to remain below historic averages, this is likely a one-time correction rather than the beginning of a trend. Furthermore, the financial assistance available to Marketplace enrollees adjusts automatically, so the vast majority of enrollees will be shielded from the increase. The bad news is that Marketplace premium rates will be made public right before the November election. Therefore, any significant increase will immediately be subject to intense political spinning, while the true picture will emerge more slowly.

Drug Prices – A Dragon Left Un-Fought

In his JAMA article, President Obama calls for increased transparency around drug development costs, higher rebates to Medicare and Medicaid, and giving Medicare the authority to directly negotiate with the drug industry over prices. However, as Ron Pollack points out in the Politico article, the reason neither these nor other measures to hold down the price of prescription drugs was included in the ACA, was that doing so would have sunk the bill. And all signs are that history is about to repeat itself with respect to the "cancer moonshot," which will continue the pattern of allowing the drug corporations to reap unchecked profits off of public sector investments.

Politics of the ACA: Play It Again (and Again and Again)

Kaiser Family Foundation's latest health tracking poll is out and it tells the same old story. People view the ACA through a partisan lens that is not really connected to what the law actually does. With Republican leaders and Republican voters continuously reinforcing each other in their animosity toward the ACA, it is little wonder that there have been more than 60 repeal votes in Congress aimed at all or parts of the law. And even though nearly all have failed (and been doomed to failure from the outset), it would not be correct to say they have had no effect. As President Obama notes, the incessant attacks have distracted from the difficult work of implementation and, in a few instances, have actually undermined the law's operation. And while he may be correct that it is not obvious that the strategy of undying hostility to the ACA has paid political dividends for Republicans, Speaker Ryan and Majority Leader McConnell would probably disagree, seeing as their party was firmly in the minority when the ACA passed.
But the ACA has another problem winning over the public beyond partisanship. That is the problem of “if the dog that doesn't bark in the night – no one notices.” For example, if Medicare spending rises more slowly than it would have absent the ACA, or if there are fewer medical errors than there would have otherwise been, how do you get people to notice? The counter-factual case is almost never persuasive.
On the other hand, it is easy to overstate the unpopularity of the ACA. Those holding an unfavorable opinion of the law include a significant number who want to see it go farther, rather than be repealed. And there is really little appetite among the public for taking people's health care away from them or allowing insurance companies to go back to pre-existing condition exclusions.
The bottom line: there is little incentive for Republicans in Congress to declare a ceasefire on the ACA as long as Republican voters continue to oppose it. There is also little likelihood that voters will change their tune in the short run as long as their leaders continue to attack it. But, eventually, the public acrimony over the ACA will subside due to the experiences of an increasing number of people who benefit from the law.
Near the end of his JAMA piece, President Obama recounts the letter he received from someone who did not vote for him and opposed "Obamacare," but changed his mind when he was able to obtain the coverage he needed as a result of the law. Take that story and multiply it millions of times over. That's why despite its flaws and the challenges that lie ahead, the ACA is here to stay.

The United States has a gun problem, and the United States has a racial justice problem. When the two collide the results are too often tragic and horrible. The events of the past week, unfolding in real time before a country still in shock and mourning over the mass killings in Orlando, further underscore this terrible reality (as if any further emphasis was needed). Last week, a peaceful demonstration in Dallas protesting the deaths of two more black men at the hands of police was turned into a scene of violence and chaos in which five police officers were killed and several more officers and civilians were wounded in what appears to have been a retaliatory attack by a lone gunman.

As Baltimore’s Health Commissioner noted in her recent op-ed, what makes these repeated violent incidents doubly tragic is that we have the means to prevent many of them. These interventions must include not only sensible gun control policies, but also tackle upstream public health interventions that have wider implications for addressing persistent racial inequality in the U.S.  As Surgeon General Vivek Murthy argued, the real challenge is to "reduce the origins and impetus for violence in the first place."

The medical community is increasingly recognizing gun violence as a public health problem, and some professional bodies, such as the American Academy of Family Physicians and the American Medical Student Association, have also specifically called out police violence. Unfortunately, political roadblocks to effective action remain firmly entrenched. Only a couple of weeks ago, House Democrats staged a sit-in as an effort to bring gun control measures to the floor. Instead of bringing a bill to the floor, the House Republican leadership is busy debating how to discipline the Democrats for their protest.

Meanwhile, as the toll of gun violence steadily mounts, the ban on using federal funds to research gun violence remains in place. Medical leaders are raising their voices to overturn the ban. Let’s hope their call is heeded soon.

"State Flexibility" a Code Word for Gutting the Medicaid Program

While the House Republicans have put forward an outline that ostensibly replaces the ACA, some analysts have concluded that "the real target of the proposal is the gutting of Medicaid." The Republican outline repeats the tired assertion that, “...governors and state legislatures are closer to patients in their states and know better than Washington bureaucrats where there are unmet needs and... all states should have more flexibility to adapt their Medicaid programs, to better design benefit packages in a way that better meets the needs of their state populations." Really? Let's look closer.

Consider first that despite the fact that covering hundreds of thousands of people made newly eligible for Medicaid by the ACA would costs states almost nothing – and, in many cases, would actually save money – nineteen states have still so far refused to do so. But, unfortunately, there is much more. For example, it took a lawsuit against the state of Washington, as well as pressure from CMS, to get many states to cover new Hepatitis C medications for most beneficiaries, and some states are still dragging their feet. If states had more "flexibility" to deny treatment, can there be any doubt that many would do so? Similarly, it took a lawsuit based on the legal right to treatment to get the state of Florida to make improvements to its Medicaid program for children. And the list goes on. The Missouri legislature recently voted to charge Medicaid recipients for missed appointments, though Governor Nixon vetoed the bill. Governor Bevin in Kentucky is seeking to impose extensive lock-out periods for beneficiaries who fall behind on their premiums and Texas is refusing to cover certain services for children with autism despite a federal directive requiring them to do so.

Now remember that all of these proposed state actions (and all of the inaction on coverage) are occurring in the context of both guaranteed federal matching funds for states and significant legal protections for beneficiaries. Consider what would happen if both of these were removed. These and other ideas that have emanated recently from some states are the best possible argument for why states should not be given carte blanche to redesign their Medicaid programs.

I recently attended Health Care for All’s (HCFA) 4th Annual Patient and Family Advisory Council (PFAC) Conference in Massachusetts, which was incredibly informative and inspiring. HCFA was a major force behind the passage of the 2008 law that required all Massachusetts hospitals to establish PFACs, and for the past eight years, has provided technical assistance, training and networking opportunities to strengthen patient and family engagement in hospitals.

So, what are PFACs and why do they matter? According to the Agency for Healthcare Research and Quality, PFACs are bodies made up of individuals who have received care at a hospital (or their representative family members) and are able to offer feedback and insights to inform and improve hospital care delivery, policies and operations to most effectively address patient and family needs and preferences. PFACs have the potential to help improve overall systems and processes of care, which can lead to better health outcomes for patients, as well as improve financial performance of health care organizations.  PFACs are a great example how to actively and meaningfully engage consumers in order to realign the health care system and place consumers at its center.

But establishing a PFAC is only the first step. Learning how to make it meaningful is an entirely other story. And that’s what the HCFA conference was all about. It began by offering a three-part vision of what constitutes authentic engagement: First, engagement is purposeful; second, engagement is effective; and, finally, engagement is equitable. The conference covered a lot of ground across these three themes, providing the nearly 300 participants with opportunities to discuss everything from building internal credibility for PFACs, to creating effective meeting agendas, to understanding why PFACs should care about and provide their perspectives around quality measures. Most importantly, the conference provided PFAC members from across the state with an opportunity to network with – and learn from -- one another.

One cross-cutting theme of the day was the importance of consumers being engaged at every level, and from beginning to end of all hospital processes. Examples abounded, including in sessions focused on engaging patients in research as partners rather than subjects, integrating patients into hospital committees, and identifying the PFAC’s role in shaping hospital community health assessments and activities in order to best address identified needs.

Another theme was the importance of recruiting a diverse PFAC membership that represents the patient population by race, ethnicity, language spoken, sexual orientation, gender, age, disability status, employment status and so forth. One PFAC’s approach to recruiting and retaining diverse members included developing a Diversity, Equity and Inclusion Council that supports other PFAC members in understanding how to be more inclusive of people from different racial and ethnic backgrounds. Another PFAC in the state is working to adapt educational materials for different age groups, particularly older adults, by ensuring materials are printed in large, bold text and colors that are easy to read. Several PFACs are changing their meeting times or incorporating virtual meetings and social media in order to accommodate members who are working parents or others who have difficulty getting to in-person meetings.

The conference helped me better understand some of the challenges and opportunities PFAC members face as they continue to develop and establish their roles within health care organizations here in Massachusetts. I also walked away from the conference with an increased appreciation of the role consumer health advocacy organizations like HCFA can play – through convenings, trainings and providing a space for PFAC members to connect – in supporting these councils so that their engagement is truly purposeful, effective and equitable.