During this Older Americans Month, we want to pay tribute to a leader with whom many Health Policy Hub readers may not be familiar: Nelson Cruikshank. Nelson was a longtime leader in the labor movement who was instrumental in creating two of the most important programs for vulnerable older adults and people with disabilities: Social Security Disability Insurance (SSDI) and Medicare.

Born in 1902, Nelson grew up to become a Methodist minister and, later, a union organizer. After a series of jobs in the federal government – including one setting up camps for migrant farm workers, a program later made famous in John Steinbeck’s novel, The Grapes of Wrath – Nelson became director of the AFL-CIO’s Department of Social Security. It was there that he worked to forge a political coalition that would go on to help win passage of SSDI legislation in 1956. Nelson then turned his attention to health care. Inspired by the effectiveness of community health clinics in the migrant camps he had established decades earlier, he organized a coalition of health care and senior organizations to push for a medical assistance program for older adults. This coalition took on the powerful American Medical Association, which opposed national health insurance. These efforts culminated in the passage of Medicare in 1965, signed into law by President Lyndon Johnson.

Nelson retired from the AFL-CIO soon after the passage of this landmark law, but continued to work on behalf of older Americans and people with disabilities for the next two decades. He served as president of the National Council of Senior Citizens – now known as the Alliance for Retired Americans – an organization formed out of the coalition he had created to urge the passage of Medicare. In 1977, President Carter appointed him as his chief advisor on the aged. In this role, he led successful efforts to preserve Social Security benefits.

I first learned about Nelson from his daughter, Alice Hoffman, who I encountered while making ACA defense phone calls. This serendipitous conversation also led me to learn that Alice is an impressive advocate in her own right. At 86, she lives in Pennsylvania and takes an active role in defending the ACA, including her efforts as a member of the Pennsylvania Health Access Network. Alice recounted a story of a visit to her retirement community from her congressman, who told the audience of older adults that while Medicare and Medicaid were going to undergo drastic changes, they wouldn’t have to worry since it “won’t affect you.” No shrinking violet, Alice immediately stood up and challenged the representative’s assumption that older adults don’t care about the next generation. Her comment was met by loud applause and cheers from her fellow audience members. More recently, Alice has become very involved in a coalition working to advocate for a single-payer health system, carrying forward her father’s vision of achieving high-quality, affordable health care for all.

It was an honor to meet Alice, learn about her father and know that his legacy of advocacy has been passed on to the next generation. She truly embodies the spirit of this year’s Older Americans Month theme, powerfully demonstrating what it can mean to “Age Out Loud.”

Despite his repeated promises on the campaign trail that he would not cut Medicaid, President Trump’s FY 2018 budget would slash the program’s budget nearly in half over the next decade. The budget assumes the $839 billion in Medicaid cuts in the American Health Care Act (AHCA) become law, and then calls for an additional $627 billion in cuts to the program, all while slashing other safety net programs too.

An attack on health and economic security for low-income communities

Cuts of this magnitude would put at risk the health of the millions of older adults, people with disabilities, children and low-income families who depend on Medicaid for their care. They would undermine a program that is essential to the fight against the opioid epidemic. And they would rock the economic security of low-income communities, who depend on Medicaid coverage to protect them against crippling medical debt.

What’s more, the Trump budget pairs these Medicaid cuts with deep cuts to other essential health and social welfare programs - like food stamps and disability insurance. Together, these programs not only boost economic security for low-income families, they also contribute to health security by putting healthy foods and safe housing within reach of families who could not otherwise afford them. By slashing these programs alongside Medicaid, the Trump budget is an all-out attack on the health and economic security of vulnerable communities.

A wakeup call for America’s governors

While many governors have expressed concern about how the AHCA ends the enhanced funding for the ACA’s Medicaid expansion, they have said relatively little about how it also turns Medicaid into a per capita cap. This budget should be a wake-up call for those governors: per capita caps are a Trojan horse that will allow the federal government to balance its budget at the expense of state budgets.  

While budget documents don’t make it entirely clear how the administration would achieve over $600 billion additional savings in Medicaid, Trump’s budget director Mick Mulvaney explained that the additional funding cuts result from a reduction to the growth rate for the per-capita cap, compared to the AHCA. That’s just a backdoor way of shifting Medicaid costs from the federal government on to states.

The Trump budget exposes as wishful thinking any assumptions that governors may have made that they could weather the AHCA’s cuts to Medicaid by utilizing additional “flexibility”. The AHCA doesn’t merely make $839 billion in Medicaid cuts; it creates a dial that Congress and the administration can and will ratchet down any time they want additional savings. The $1.47 trillion in Medicaid cuts inherent in Trump’s budget this year is likely just the beginning.

Additional cuts targeted at children

Trump’s budget also targets the Children’s Health Insurance Program (CHIP), which provides health insurance to children of low- and moderate-income families who are not eligible for Medicaid. In 2016, CHIP covered nearly 8.9 million kids, while Medicaid covered about 37 million. Together with Medicaid, CHIP coverage has helped lower the uninsurance rate for children to a historic low of 4.8 percent.

CHIP is currently funded through September 30, 2017 but will need another funding extension in order to continue past that date. The Trump administration’s proposed budget would extend CHIP funding for only two years despite the recommendation from the Medicaid and CHIP Payment and Access Commission to extend funding for five years.

The proposed budget would end the higher federal CHIP matching rate known as the 23 percent bump and eliminate the Affordable Care Act’s Maintenance of Effort requirement at the end of September—two years earlier than the ACA intended. It also assumes the AHCA provision that rolls back eligibility for school-aged children from 138 percent FPL to 100 percent FPL—potentially affecting millions of children. We know that Medicaid and CHIP disproportionately cover children of color, so not only is this a loss in coverage but a step backward in our efforts to address health equity.

Trump’s budget would further undermine CHIP’s efficacy by eliminating federal enhanced matching funds to children above 250 percent of the Federal Poverty Level. This is particularly problematic because in many states CHIP eligibility extends beyond this marker. For example, Alabama provides CHIP coverage up to 317% FPL and New York goes up to 405% FPL. By capping these CHIP eligibility levels, the Trump budget reduces state flexibility in meeting the needs of children. Overall, the Trump administration’s budget does not help advance children’s health, instead it puts us in danger of reversing our hard won coverage gains.


It’s May, and that means it’s Older Americans Month. This year’s theme is Age Out Loud, chosen “…to give aging a new voice – one that reflects what today’s older adults have to say.”

Older Americans are a group that have a lot at stake in ongoing health system transformation initiatives. A vital goal of the Center for Consumer Engagement in Health Innovation is promoting the meaningful role older consumers can exercise when they lift up their voices. Several of our staff members recently met an older adult who perfectly exemplifies what it means to stand up and speak out loudly for better health out of one’s own life experience. Kathy Paul is a 69-year-old resident of Lynn, Massachusetts and an active member of the Massachusetts Senior Action Council. The Council, founded in 1981, is a statewide, grassroots, senior-led organization that empowers its members to use their own voices to address key public policy and community issues that affect their health and well-being.

Kathy spoke out loudly at a press conference in Boston on May 8 [video courtesy of BNN – Boston Neighborhood Network] on the American Health Care Act, a bill that would result in significant cuts to care for older adults. The bill was passed by the U.S. House of Representatives and is now pending before the Senate. Kathy joined Sen. Edward Markey and other community leaders at the event, including speakers from Health Care For All, Community Catalyst, Health Law Advocates, Boston Medical Center GROW Clinic, Disability Advocates Advancing Our Healthcare Rights, Massachusetts Senior Action Council, Massachusetts Organization for Addiction Recovery, the American Cancer Society Action Network and the American Heart Association.

Kathy introduced herself “…not just as an activist, but as a mother of five, a grandmother of 10, and a great-grandmother of five, who is deeply concerned about the future of health care.”

She continued: “As a senior, I live on a very limited fixed income and I rely on MassHealth [the Massachusetts Medicaid program] for my health care. I feel very fortunate because, for the most part, I am very healthy. I don't take any medication and stay very active. But I know the reality of when that's not the case. My husband had several very serious health conditions including diabetes and kidney failure. He had to endure two amputations below the knee and was on dialysis three times a week. If it was not for MassHealth, we would never have been able to cover his care. I am thankful that I was able to focus on taking care of him rather than worrying about how we would pay for the care he needed or being denied because we did not have the money to meet a huge deductibleThis debate is not about party politics. This debate is about the wealthy getting wealthier and the rest of us paying the price. We cannot allow this assault on our right to basic health care to move forward. We must speak up and speak out.”

Kathy first got involved with the Massachusetts Senior Action Council in 2007, while her late husband was still alive and she was putting most of her energy into the demands of caring for him. After he passed away in 2012, it was a turning point in her life. She explains, “With more time on your hands, what do you do? Just sit in the house, stare at the walls and complain, or get out and do something about it? What our group likes to say, ‘we don’t just take it, we take charge!’”

In recent years, ‘taking charge’ for Kathy has meant testifying at the Massachusetts Statehouse against rate hikes for older adults using public transportation services and advocating for genuinely affordable housing options for older adults in the Commonwealth. And on a Monday morning in May, it meant joining hands with her United States senator and telling her story from the podium to a bank of television cameras and assembled reporters.

We can’t wait to see what she’ll do next.

During this month, let us know at @ccehi how you #AgeOutLoud!

With our thanks to Kathy Paul for her guest contributions to this post.

Here at the Center for Consumer Engagement in Health Innovation, we hold the core belief that the voices of consumers are essential for making our health care system better: easier to navigate, more user-friendly and more effective at addressing the things that matter to patients, families and caregivers, and communities. We work toward increasing the engagement of consumers at three levels: in the clinical setting; at the level of the health care organization or practice; and in health care policy-making.

While there is a robust and growing body of research that examines how and why to engage consumers in the clinical setting (first level), there has to date been less evidence examining the engagement of consumers at the other two levels.

This is why I was delighted to find several articles published over the past year that examine the engagement of consumers at the organization/practice level. Here are my brief notes from four papers in this sphere that I found valuable:

In “Engaging patients in primary care practice transformation: theory, evidence and practice,” published in Family Practice in 2016, authors Anjana Sharma and Kevin Grumbach review the evidence for the efficacy of patient engagement in primary care practice, at the clinic or practice level. They retrace the history of patient engagement, noting the establishment of federally funded community health centers in the 1960s, with the requirement that health center patients must comprise at least 51 percent of a center’s community advisory board. They summarize the conclusions of systematic reviews published since 2000 on the effects of patient engagement at the practice level and note some promising findings related to improved workflow, access and understandable patient information. Finally, they identify strategies for promoting patient engagement at the practice level, including things such as patient surveys, town halls and patient advisory councils, summarizing the advantages and limitations of each.

Dr. Sharma is also the lead author on another 2016 paper focusing on patient advisory councils, published in the Journal of the American Board of Family Medicine. The paper takes its title from a question posed by one of the study participants: “How can we talk about patient-centered care without patients at the table? Lessons learned from Patient Advisory Councils.” The authors identified nine primary care clinics in Northern California with high-functioning patient advisory councils and interviewed one clinic staff member and one patient member of the advisory council at each site. The interviews reinforced the importance of recruitment and training of patients, as well as of support for the training of staff facilitators. They note that training of consumers likely will be particularly important to increase the diversity of advisory council representation to include patients from hard-to-reach populations, an area of active work for us here at the Center.

A multilevel analysis of patient engagement and patient-reported outcomes in primary care practices of Accountable Care Organizations,” by Stephen Shortell and colleagues in the February issue of the Journal of General Internal Medicine analyzed patient engagement and patient-reported outcomes for patients with cardiovascular disease or diabetes in 16 primary care practices within two accountable care organizations: Advocate Health Care (AHC) in Chicago, IL and DaVita HealthCare Partners in Los Angeles, CA. The authors found that in practices that scored higher on a scale of “patient-centeredness” (made up of five questions related to how well the practice incorporates patient feedback), patients were less likely to report symptoms of depression and more likely to report better physical health outcomes. Interestingly, a 39-item scale completed by practice administrators listing various engagement activities was negatively associated with patient-reported outcomes, suggesting that the cultural dimension of patient-centeredness may be more important than simply increasing the number of engagement activities practices implement. This suggests that we need to go beyond “checking the boxes” when it comes to patient engagement activities and focus on creating a pervasively patient-centered culture of care.

Finally, I enjoyed reading about a family medicine clinic in Calgary that established a patient advisory council. “Patient and citizen innovation in family practice,” by Ron Garnett and others in Canadian Family Physician describes how the clinic recruited patients for the council. It also describes the activities completed by the advisory council to date, including delivering presentations to family medicine residents and staff on the role of the council, establishing patient liaisons to several committees and conducting a pilot patient experience survey. Future areas of interest for the advisory council include developing systems to routinely and accurately measure and enhance patient satisfaction, immersing learners in a culture of patient-engaged clinic service, and developing a mechanism for ongoing evaluation of the outcomes and effectiveness of the council’s activities. I certainly look forward to hearing more about their progress in these very important activities.

Taken together, these papers help to build out our nascent base of evidence around the “hows and whys” of patient engagement. As this field develops, I look forward to sharing many more research updates with you in the future.

Last week’s abrupt firing of FBI Director James Comey has pushed health care out of the headlines, at least to some extent. However, the progress of the health care bill through Congress raises its own questions about the health of our democracy. Only about 20 percent of the public supports the American Health Care Act (AHCA), according to the most recent polling. And nearly the entire health care industry plus groups like AARP, American Cancer Society and National Alliance on Mental Illness (NAMI) deplore the bill. Furthermore, there is a large intensity gap, with supporters lukewarm and opponents intense in their dislike of the bill. Moreover, health care now tops the public's issues of concern, tied perhaps not coincidentally with poor government leadership.

In a functioning democracy, such massive public opposition coupled with equally unified opposition from the most affected segments of the economy would spell legislative doom. However, in the current political environment, passage of legislation that serves the narrow ideological and financial interests of only a very few is a better than even bet.

Washington DC – Home of the Whopper

But democracy still matters. And the best proof of that is that the proponents of the AHCA, both in the House and in the administration, feel compelled to continuously misstate (aka lie about) the content and the consequences of their legislation. They have claimed, for example, that no one would lose coverage as a result of the cut to Medicaid (HHS Secretary Price), that the bill was bipartisan (Rep. Denham), or even that no one dies because they don't have access to health care (Rep. Labrador). But lying has been a foundational part of the strategy to oppose the ACA since before it even became law. Remember "death panels" and, more recently, candidate Trump's promises not to cut Medicaid or Medicare (both broken, of course, in AHCA)?

In addition to the outright falsehoods, in the past week we have heard Republicans offer up statements ranging from the ludicrous to the bizarre to the reprehensible. On the ludicrous front, just a few weeks ago President Trump observed that no one could have known how complicated health care was; now he claims to know everything about it.

For an example of the bizarre, we have Rep. Mo Brooks suggesting that preexisting health conditions only afflict those who have done something wrong to deserve their illness.

As for the reprehensible, I give you Senator Hatch, perhaps channeling his inner Mitt Romney, dismissing all of the people who benefit from the ACA as people "on the dole who are trying to get every dime they can."

Sabotage Watch

While lying is a critical part of the ACA takedown strategy, it is not enough by itself. Too many people have benefited to make the lies credible to most of the public. Therefore, another essential component of the ACA takedown strategy is to undermine its effectiveness through a combination of action and inaction. In particular, by creating a climate of financial and regulatory uncertainty, the Trump administration is leading even those insurers who choose to remain in the marketplaces to seek large premium increases. If we had an administration and a Congress that tried to make the ACA work rather than undermine it at every turn, there is little doubt that more people would be covered and premiums would be lower.

Senate Off to a Shaky Start

Things did not get off to a great start in the Senate for Majority Leader Mitch McConnell when, following the House's male-dominated victory party, he appointed an all-male task force to work on the Senate version of reform. In addition, the complicated dynamics in the Senate were on full display, with Senators Cruz, Lee and Toomey all pressing to make the Senate bill even worse than the House bill by making the cut to Medicaid bigger and by rolling back even more insurance protections. At the same time, Senators Collins and Cassidy were publicly criticizing the House bill because it both cuts benefits for seniors, kids and people with disabilities to pay for tax cuts for the rich, and would undermine protections for people with pre-existing conditions.

Most pundits expect McConnell to figure out some way to thread the needle in his chamber, although it remains to be seen whether something that can pass the Senate can make it back through the House.

Meanwhile, the dodges and deceptions don't appear to be working. Public fear and anger are intense and seem to be growing. With a majority of Republicans now saying that government should guarantee access to affordable quality health care, continued embrace of the AHCA puts Republican legislators at odds not just with the general public but also with their own voters. Passage of the AHCA immediately increased Republicans' chances of losing the House in 2018, according to some election watchers. People have focused special vitriol on Rep. Tom MacArthur, who originally opposed the first version of the AHCA, for his role in getting the bill through the lower chamber. And members such as Mark Amodei from Nevada, who flipped from opposition to support of AHCA, have seen their favorability ratings drop--a warning for Senator Dean Heller, one of the most endangered members among Senate Republicans.

With at least a couple Senators nervous (and McConnell can only lose two in total), getting a bill through the Senate is already a high hurdle to clear. Getting a bill that could become an anchor around the necks of Republican candidates in 2018 through to final passage seems likely to prove a much greater challenge.