Live from Health Action 2014...Friday 1/24/14 - Families Usa Skip to Main Content

Live from Health Action 2014…Friday 1/24/14


From Talia Schmidt

Families USA’s health system reform expert, Kim Bailey, takes the stage to introduce her panel. Her energy is as evident and bright as her fiery red hair as she asks, “What exactly is health system reform?”

This can be anything from providing better quality of care to achieving better health care outcomes to changing our payment options.

“In order to make the system work better, we have to change the culture of medicine,” Bailey says. It’s all about engaging the stakeholders involved—providers and patients.

The panel’s first speaker, Dr. Anne Beal of the Patient-Centered Outcomes Research Institute (PCORI), shares that her organization was built because of the Affordable Care Act.

“People want to know, what’re the outcomes and what’re the choices that are most meaningful to them?” Beal says. Consumers want to know where they can get the information they need when they need it.

PCORI strives to help people make informed health decisions and it does that through research.

“It’s not just research ‘cause it’s important or interesting or could help Harvard faculty get promoted,” Beal reflects. “It’s guided by and meets the needs of patients.”

She underscores the significance of taking the extra step. It’s not enough to just do the research. We have to make sure patients and consumers get that information.

“Engagement is a key part of that,” Beal says. “Engagement is giving someone a seat at the table.”

Beal notes the importance of developing a patient engagement advisory panel, a task PCORI has successfully undertaken.

“No one knows how to do patient engagement; we’re making it up as we go along,” Beal offers with a good sense of humor.

PCORI offers its Pipeline to Proposal Awards, which brings people with common interests together to engage in research in a way that hasn’t been done before, in a grassroots way.

Dr. Harold Freeman of the Harold P Freeman Patient Navigation Institute discusses how we can transform the patient experience.

Too many barriers exist in the health care system—whether it’s related to fear or distress, confusion when it comes to diagnoses, preventability or affordability.

One major barrier is access for minorities or low-income people. It’s not enough to have health insurance, Freeman says. He underscores the difference between insurance and access to timely care.

“There’s a difference between quality of care and quantity of care, and our system pays for quantity of care,” Freeman notes.

Navigation is a patient-centric health care service delivery model, he says. It should serve to virtually integrate a fragmented health care system for the individual patient.

“The core function of patient navigation is the elimination of barriers,” Freeman notes.

No person in America should experience delays in diagnosis and treatment that jeopardize survival. No American should be bankrupted by a cancer diagnosis.

Kaiser Permanente’s George Halvorson shares that there are three traits that contribute to disparities in health care:

  • Bias
  • Biology
  • Behavior

If we’re going to end disparities in this country, what do we do? Halvorson says we can identify medical best practices, track whether these were being delivered, or maybe even build an extensive database.

We need to give patients information they can use to make meaningful decisions in their own health care.

People should not be dying of low-quality care, he notes.

“We need to figure out how to make the care delivery system better” Halvorson says, “and we do that by making it more transparent.”

From: Kate Blocher

Phil walks up to wrap up, but Ron Pollack, Executive Director of Families USA has an announcement.

Ron thanks the awardees but there’s a surprise. He wants to take a minute to honor a special member of the Families USA family. Without her Health Action conference wouldn’t exist. She runs the show and does it with grace, humility and an amazing sense of humor. We want to acknowledge and thank Regina Wise who has been managing Health Action for longer than we can remember.

“We want to acknowledge her tremendous leadership and wonderful work with Health Action, and she wouldn’t let us say this and that’s why we didn’t schedule it. But we all know if she did not exist we would be working hard to invent her.”

The crowd is again on their feet and it’s clear how much they love and appreciate Regina. But it’s no a surprise to this writer. Regina is an amazing woman, someone I am proud to call a co-worker, but more importantly a friend. And everyone that knows her feels the same.

You’re the best, Regina and I’m glad we finally took the time to recognize it.

From: Kate Blocher

Dizzy takes the stage to accept her award to another round of thunderous applause.

“Thank you, Families USA and the members of this family. I love having this network of folks across the country who are so giving without exception, who share resources with no strings attached, and who are always willing to help.”

The work that we do to improve health care justice will never been adequately addressed just by addressing health care needs. We need to be purposeful in addressing all determinants of health care outcomes and make sure our work includes those factors.

We must address those social determinants that result in poorer health outcomes. Recognizing who the uninsured are, where they reside, and make sure they have the right partners to work within those communities.

Dizzy’s work focuses on creating strong partnerships to make sure all communities are included in moving forward on health care justice. And she’s inspired by her work with all the members of the Families USA family.

From: Kate Blocher

Finally, Don Hazaert, Executive Director of Michigan Consumers for Healthcare comes to the stage to introduce the final awardee, Dizzy Warren.

Dizzy Warren is the Community Outreach Manager for Michigan Consumers for Healthcare. The coalition addresses the opportunities that the Affordable Care Act presents for Michigan citizens. Dizzy is being especially recognized for her health equity work.

Dizzy’s credentials as a leader in the field of social determinants for health are well known. And she has most recently been recognized nationally for her work in developing the Enroll Michigan Navigator Program, which she made sure was implemented through a health equity lens.

Dizzy is driven by a dogged determination and compassion to help those in need. One story illustrates this perfectly. One of the consumer groups Enroll Michigan Navigator Program was working with had been neglecting a certain neighborhood in Detroit, and they had decided it wasn’t worth trying to help the citizens in that area because it was too difficult. Dizzy didn’t believe them and went to investigate herself. What she found was one of the most blighted neighborhoods in Detroit, and from that visit she determined she would not let the group stop serving that area. That community had already lost so much. And that’s exactly what she told that group.

Because of Dizzy’s commitment to helping our most vulnerable citizens, that consumer assistance group is now one of the highest performing assistance groups in one of the toughest neighborhoods in Detroit.

From: Kate Blocher

Cathy Levine takes the stage to another loud round of applause.

“I am very grateful, but embarrassed by the attention, for being recognized for work that we’ve all been doing.”

Cathy comes by her passion honestly. She’s been on the picket line with her mother since she could walk. And she’s grateful for the recognition but makes sure we all know her success is because of those around her.

From: Kate Blocher

Phil asks Reverend Tim Ahrens, Pastor of the United Church of Christ in Columbus Ohio to introduce our next awardee Cathy Levine.

Cathy Levine is the Executive Director of Universal Healthcare Action Network (UHCAN) Ohio whose mission is to achieve high quality, accessible, affordable health care for all Ohioans.

Tim begins, “Cathy is one of the most inspirational social justice leaders in America, and Ohio is lucky to call her their own.”

Cathy has dedicated her life to speaking for the poor, advocating on behalf of children, women, and men who others have ignored.

She can turn a state around with her righteous anger, and if you really want to get her going, just tell her, Cathy, you can ‘t do that

The idea that health care is a universal right has always been a part of Cathy’s belief system, long before President Obama came to office.

Tim closes. “Thank you Cathy for pointing the way for all of us, God bless you.”

From: Kate Blocher

Renate Pore takes the stage and the crowd is on their feet.

“Thank you Kathleen, I love you.”

She’s honored to be here and be able to work with such a diverse group of national and state groups all doing amazing work to advance health care justice. Her speech was short, but it’s clear she’s an honored member of this community.

From: Kate Blocher

Renate Pore is the Director of Health Care Policy at West Virginians for Affordable Health Care, which was organized in November of 2005 by a diverse group of individuals concerned about the rising cost of health care and health care insurance coverage. Kathleen describes Renate as, “using her tenacity and warmth to advance health care policy in West Virginia for over 30 years.”

Renate’s tenacity comes from early childhood struggles. She was born in Germany to a teenage mom, her father died in World War II, and her town was bombed out during the war. When she was 10 her mom married an American GI and they moved to the States. Because she didn’t know any English, at 10 years old they put her in the first grade. But she credits that time with teaching her warmth and compassion, and she has used that strength of character and compassion to do incredible work in West Virginia.

Renate has been the driving force for CHIP enrollment in West Virginia, and because of her hard work, West Virginia has the highest enrollment numbers for children in CHIP.

Whether she’s worked inside or outside of government, she’s done the lord’s work. She won’t let opponents of the law stand in her way. Her whole life she’s seen the big picture, mapped out a strategy and rolled up her sleeves to get the job done, and that’s why we’re honoring her today.

From: Kate Blocher

Phil Villers, President of Families USA, walks to podium to start the ceremony. Phil reminds the audience that he, like the rest of us, has been at this for a long time – over 30 years. Last year he told the audience to celebrate, defend, and build. This year he wants us to celebrate our victory 100 years in the making, to work to control the out-of-control costs of health care, and finally to work towards making sure everyone in all states, no matter your income can access care. As Phil puts it, “recalcitrant states cannot ignore poor people and get away with it.”

Phil introduces Kathleen Stoll, who has been with Families USA for many years, but has also been on the board of West Virginians for Affordable Health Care to introduce our first awardee Renate Pore.

From: Kate Blocher

It’s lunchtime at Health Action 2014 and the ballroom is packed. At this lunch we will be honoring Families USA’s consumer health advocates of the year.

Every year at Health Action Families USA awards three consumer health advocate awards to individuals who have made outstanding contributions on behalf of our nation’s health care consumers. As you can imagine, it’s a difficult decision because we are fortunate enough to work with so many amazing and dedicated advocates. But this year selected three outstanding candidates: Cathy Levine of UHCAN Ohio, Renate Pore of West Virginians for Affordable Health Care, and Dizzy Warren of Michigan Consumers for Healthcare.

From: Carla Uriona

And now, Families USA executive director, Ron Pollack, is introducing Kentucky Governor Steve Beshear.

Governor Beshear opens his remarks by commenting on how many might consider Kentucky “an odd choice to be leading the nation in health reform”. He points out, “Our state has suffered the stereotype of being a state behind the times. And our electorate has been cool to [President] Obama, by a two to one majority in 2012. That’s a classic red-state persona right? Wrong.” The governor goes on to describe Kentucky as the only southern state to both expand Medicaid and develop and launch its own state-run health insurance marketplace.

The governor describes how he accomplished this with one word: “Easy,” he says, as the crowd laughs. “I determined that, as governor, I had the legal authority to do it. The general assembly had delegated the authority to determine medicaid eligibility, so I didn’t have to wrestle with the legislature. And the same goes for the exchange. I issued an executive order and we just did it.” When he discusses the subsequent court challenge to his efforts, he says simply, “We won,” and goes on to recount, “the people of the Commonwealth of Kentucky won. The ability to access health care no longer being held hostage to political considerations.” In response to what he describes as a “huge disconnect between the rank partisanship of national politics and a governors’ charge to help families and bring in money,” he says dismissively, “I don’t have time for all the political craziness stat goes on in this state.” [audience laughs].

The governor underscores the power of the Affordable Care Act as a tool for health care transformation, not a referendum on the president.

He explains why he moved forward so aggressively on health care reform:

Kentucky, he says” is a state whose collective health has long been horrendous. We rank among the worst if not the worst on almost every major health category.” “You name the condition,” he adds, “and we don’t look very good in it.”

Governor Beshear cites the progress made in health care, but replies that those incremental improvements are not enough. He underscores the need to make fundamental change: “I need a big solution. Along came the ACA and gave that solution to me.”

He cites a few statistics. 640,000 Kentuckians were uninsured prior to the ACA. “For the uninsured, the lack of health coverage puts health and financial security at risk. These folks have to choose between food and medicine. They skip visits to the doctor, hoping and praying that a condition turns out to be nothing. They live in fear that bankruptcy is only one bad diagnosis away.”

To Governor Beshear, this situation was unacceptable. And he describes his push for health reform in his state as “the morally right thing to do.”

He pivots his speech to the state’s financial health and lists the consequences of the uninsured, higher health care costs, lower productivity, decreased school attendance, a poor image for the state, and lower quality of life for its residents.

He describes the process to assess the financial impact that a state-based exchange and Medicaid expansion would have on Kentucky’s budget. He hired two independent experts to conduct an economic impact study. He sums up their findings as overwhelmingly making the case for taking the steps to health reform in his state. With Medicaid expansion, he explains, he could inject 15.6 billion dollars into the economy, and create 17,000 new jobs. He could protect Kentucky’s hospitals from cuts in funding and shield businesses from penalties, he adds. The governor looks directly at the audience and says, “They [the independent experts] looked me in the eye and said Governor, you can’t afford not to do this.”

Governor Beshear concludes his speech with the results from a new poll in Kentucky: 8 in 10 adults support the state’s decision to expand Medicaid to cover more people. He closes by saying “too often politicians see terms in political ground to be won and lost. But this is about human beings, not democrats or republicans.” The audience seems to agree.

From: Carla Uriona

Dee shifts the conversation to messaging and outreach on Medicaid expansion: what resonates to get the public invested.

Ginny (TX): Describes her challenge around how to depict that “We’re all in this together for all Texans.” She describes a very effective message that resonates with most of her audiences:

“We pay for this three ways: we leave people uninsured to go to public hospitals and ERs, so we pay for that with taxes. Then if we have insurance, we pay through our higher premiums–we have very high premiums in Texas. And third, we tell folks that your federal taxes are going to other states.”

She cites that 60% of uninsured Texans are Latino. One effective tactic is to share how neighboring states have health coverage. Ginny describes an effective partnership with Univision, the Spanish-language television channel, in which Univision featured a daily human interest feature story on health coverage in the days leading to the enrollment deadline. The channel even found a particular young man’s story so moving that it created a documentary out of it, taking him around the country to interview Mayor Castro and talk to the Florida governor about health care. Ginny’s advice: take things that seem too complicated and political and take it back to people’s stories.

After a brief discussion on the importance of keeping the momentum going for both medicaid expansion efforts and for keeping expansion programs effective and sustainable, Dee wraps up the panel with final words from the panelists on where things are headed for states.

Alan (NASHP): “Over time I see more blending of insurance along a continuum, Medicaid versus exchange for example, which presents opportunities for purchasers and payers to have more leverage. The long-term path is a positive one. The fight over public versus private insurers will fade and what will be more important is whether people have coverage.”

Ginny (TX) agrees with Alan: “Co-pays not ideal but we can leave that on the table as long as they can’t get out of hand. Our folks tell us ‘I can’t pay what I can’t afford,’ but we know that most of our folks really are willing to pay something.”

MaryAnne (WA): “For us, it’s all about how we get the health delivery system up and running.” She adds that changing or tweaking the system is not the priority.

Dee asks for final advice for advocates:

Alan (NASHP): Cautions advocates to not “wall off” Medicaid and to “look at health care as a package instead of drawing lines in the sand by saying ‘this is the old Medicaid program and we won’t change anything,’ while the rest of the health care system falls apart. We need to be more dynamic in our thinking.”

Ginny (TX): “Dig in and be prepared. Don’t pretend that you’ll be out of this in six months to a year. Look for opportunities to get short-term victories and results to keep folks moving. Localize it because people need to feel connected. Don’t be afraid to connect this to voting. Even for folks with 501 (C)(3)s (limited ability to endorse candidates and grassroots lobbying), you can share positions without judging them, and you can remind people to vote.”

From: Carla Uriona

Dee Mahan, Director of Medicaid Advocacy at Families USA is introducing the plenary on the diverse state landscape that constitutes Medicaid expansion. We’ll hear from a Medicaid director from state that has already expanded Medicaid, an advocate with on-the-ground operations in a state that faces challenges to expansion, and an executive director of a national organization that works with states across the spectrum.

Dee Mahan starts off the discussion by reminding us that, today, states are in different places regarding Medicaid expansion–half have expanded and, in the other half, the debate on expansion continues. For those, some will expand in 2014 and some later.

Introduces MaryAnne Lindeblad, head of the State of Washington Health Care Authority, which successfully expanded Medicaid; Ginny Goldman, who is working to expand Medicaid in Texas and is the founder of the Texas Organizing Project–the leading voter turnout organization in the state; and Alan Weil, executive director of the National Academy for State Health Policy (NASHP), who works with states across the spectrum of Medicaid expansion.

Dee starts off the panel with some broad questions: What is your state’s experience with the process of expanding Medicaid?

MaryAnne (WA) shares how her state showed bipartisan support for Medicaid expansion and for a state-based exchange from the start–from the legislature and governor’s office, both of which saw this as an opportunity for significant savings and an economic boom for the state.

Challenges remain, namely, improving the customer experience, tracking enrollment by county, meeting enrollment targets, finding and then reaching underserved populations, and working closely with the state insurance commissioner on network adequacy. Working on creating a shopping experience for Medicaid customers too, similar to what consumers have in the marketplace.

“We are the state that has the most to gain from Medicaid expansion,” she confirms. Ginny describes her coalition as being a network of close allies and partners like Planned Parenthood, SEIU, etc., but perhaps somewhat different because it includes unusual partners such as the Chamber of Commerce, which is concerned about number of jobs lost by not expanding, as well as the Texas Medical Association and the Texas Hospital Association. Vocal community support also distinguishes her coalition.

Texas’s challenges, Ginny adds, include vocal opponents of the Affordable Care Act–Texas Senator Ted Cruz and Governor Rick Perry. [Audience chuckles sympathetically]. Opponents to health care reform ignore the fact that 1.5 million Texans can’t qualify for the exchanges, Ginny reiterates. But she goes on to recount how the Texas legislature actually showed that there could be bipartisan support to expand Medicaid, with both Republicans and Democrats willing to push forward bills to that effect. though these efforts were hampered by the Governor Perry’s public avowal to reject any budget with support for Medicaid expansion.

Successes in Texas: Challenging Perry’s narrative, according to Ginny (adding wryly, “We measure success differently in our state.” [more laughter from the audience]. Ginny relates how, even though (according to her) Governor Perry calculated that no citizen would know the true effects of his rejecting Medicaid money, her coalition did just that. In her words, “We told over 400,000 people in 2013 about the Medicaid expansion. 44,000 of them took action” (through petitions and other forms of direct citizen advocacy).

The Texas Organizing Project also organized working Texans to directly confront Governor Perry–these were residents who had jobs and no health benefits. They forced the governor to answer their questions publicly as a rebuttal to his repeated claims that if you had a job in Texas you had access to health care (according to Ginny). Ginny recounts how the Governor met with working, uninsured Texans in the Austin Chamber of Commerce when activists forced him to meet privately after vocally disrupting a speech.

She enthuses about a late-breaking victory that came to light today: Her project also challenged rules on navigators would have slowed down the process of training and advocating for navigators in Texas. These rules were struck down today (proposed additional fees for navigators were rejected, additional training hours were limited, cumbersome registration regulations for advocacy groups like hers were struck down).

Alan (NASHP): Alan is talking about the “middle” states, those that are not ideologically opposed to Medicaid expansion, but simply need to find a way that works for them. He brings up two components to this process: substantive and political.

Substance: States are taking different tactics to move explore Medicaid expansion. Some are exploring offering Medicaid enrollees private health coverage (Arkansas), others don’t see this as much of an issue because most of their Medicaid population is already served by private health providers. And other states want what Alan describes as an “automatic trigger” that would allow the state to terminate its Medicaid expansion program if the government stops funding Medicaid.

Alan sums up the state landscape on expansion as, essentially, different state governments trying to craft a Medicaid program expansion unique to a state’s needs. “This isn’t opposition,” he reiterates, “but a sincere effort to slot the expansion into existing terrain of private coverage for low-wage workers as well as what the rules would be for people in the exchange.”

Politics: Alan reminds the audience that many states fall between the extremes (“immediate embrace or opposition from the outset”) for Medicaid expansion. Interestingly, he is candid about the fact that there are political leaders who, in his words are “looking for ways to still be against Obamacare, but who are now seeing the human and economic consequences for expansion.” Over time, he continues, we’ll see that every state that moves forward with expansion has, as he puts it, “a deeper understanding of program, and finds it harder to fall back on the rhetoric of welfare when the reality is that it supports working families.” The new state perspective, according to Alan? “How do we make medicaid expansion work for us, as opposed to: we’re doing this because we have to.”