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.

The rise in opioid misuse has continued to receive attention across the country, and only more urgently in recent months as Republicans continue to press forward toward a repeal of the ACA with a disastrous replacement bill that makes deep cuts to the Medicaid program and would reduce or eliminate care for many people with substance use disorders. Often, the majority of this attention is on adults, who are the primary users of opioids. Less attention has been directed toward infants exposed to substances during pregnancy and who, as a result, may be born with an opioid use disorder. This condition in newborns is termed neonatal abstinence syndrome (NAS). 

Opioid misuse is a multi-generational issue that requires supports along the lifespan. Massachusetts is disproportionately affected, placing it second in the nation for prenatal exposure (13.7 per 1,000) after the East/South Central region of the U.S. Nationally, the rate is about five babies out of every 1,000 births. The average duration of inpatient treatment for NAS is 19 days with an average cost of $30,000, placing severe strain on health systems to support affected infants and their families. Through this lens, the Massachusetts Interagency Task Force on Newborns with Neonatal Abstinence Syndrome published a highly anticipated report that provides key recommendations about how to address the current gaps in care and more deliberately address the needs of infants and parents through collaboration and coordination across health and human services.

It is worth noting that this Task Force is the product of robust advocacy by a Community Catalyst-led workgroup on NAS that included a broad array of members ranging from early intervention providers, legal advocates, child welfare advocates and children’s mental health advocates to physicians –pediatricians, obstetricians/gynecologists and medical residents. The lead children’s health advocacy partner, Children’s Health Access Coalition (CHAC), helped develop and champion legislative language in the last hours of the state’s budget deliberations in 2016 to include the revenue-neutral task force.

We are pleased with the report, although we note the need to address how all substance use disorders affect newborns, not just opioids. We also note that this response is much more productive than society’s response to the “crack baby” epidemic of the 1980s, when the babies at risk were born to women of color.

What did the Taskforce find?         

There are 12 key findings in the taskforce report. It is worth a close review. We highlight some key themes that are important for advocates as they seek to influence state policy and practice:

A multi-generational approach that embraces trauma-informed practices across the lifespan is necessary for a robust blueprint to address NAS and substance use newborn (SEN) exposure.

  • The Taskforce leverages a Five-Point Intervention Framework developed by National Center on Substance Abuse and Child Welfare (NCSACW) that is a multi-generational, trauma-informed approach and embraces a life-course approach to services and supports. In other words, substance use programming should be universally included at all stages of life – from adolescent prevention and pre-pregnancy through pregnancy, birth, neonatal and post-natal stages.

Evolving state-level health system transformation (HST) efforts are a lever to advance NAS/SEN priorities and best practices.

  • The Taskforce recommends insurance reimbursement for care-coordination across provider types and a mechanism for provider accountability for warm handoffs to different levels of care. We would add that any patient care team be culturally/linguistically competent and include peer support through a family member, caregiver or trained peer support coach.
  • Another set of recommendations highlights strategies to increase connections between the health system and community-based supports. We would also recommend cross-sector training so that different agency disciplines build trust across human service sectors.

Public health awareness campaigns around opioids continue to be important but could integrate more explicit messages about substance use and pregnancy. We suggest that they also include discussion of other substances, particularly alcohol, that do even graver damage to newborns.

Coverage is key. Many of the recommendations rely on affordable access to contraception, substance use treatment, mental health services and preventive services across the care continuum.

Data remains a barrier to coordinating care and tracking and monitoring quality and outcomes.

  • Notably, the Taskforce calls for the creation of a statewide “dashboard” of key metrics to monitor progress on aspects of care for families impacted by perinatal substance use. See the report for a visual of the dashboard and its proposed elements. We recommend inclusion of analyses of race/ethnicity data to document health inequities and to develop targeted programs and improvements to advance health equity.

As you dig into this report – there are clear areas of policy and program improvement that advocates might consider in their states. For example:

  • Extending early intervention eligibility for all babies exposed to substances (not just opioids) to a full three years;
  • Increasing the number of inpatient mother-child treatment beds and requiring universal mother-child bonding protocols in hospital settings;
  • Developing of a coaching track for specialized training in supporting families across the intervention points;
  • Developing incentives for providers to develop post-partum support programming; and
  • Developing and expanding recovery coaching for foster care involved families.

What’s Next?

As advocates mobilize to protect our care through ACA and Medicaid defense – this Taskforce report highlights the important role that coverage and expanded SUD benefits play in providing a crucial doorway to recovery for adults and opioid exposure reduction for infants. We must highlight that this improves care for our youngest and most fragile consumers. The Taskforce report also provides advocates a set of actionable priorities to set in motion in their states. Our infants and families cannot wait.

A special thank you to Gabrielle Orbaek White for her leadership on the NAS workgroup and to Mark Friedman for his participation in the Advisory Council. Finally, a thank you to Maryanne Mulligan for her tireless advocacy on behalf of Early Intervention providers and Suzanne Curry for her legislative advocacy.

As Mother’s Day approaches, children in communities across the country are busy constructing cards and coupons entitled “free hugs” and “will do dishes” while partners place orders for flowers (or mulch – depending how you roll). But this Mother’s Day is different. For moms everywhere, there is heightened anxiety and worry about the health, wellness and economic security of their families.

In early May, House Republicans passed the American Health Care Act (AHCA) bill now sitting at the Senate’s doorstep. The bill dismantles key health coverage programs that support women and children, people with disabilities and older people. It would throw at least 24 million low- and moderate-income families off of their health coverage. While the House bill is multi-generational in whom it harms, it is anti-mother, anti-child and anti-family. AHCA is the Mother’s Day gift that demands a speedy return to sender. The Republican bill to repeal and replace the Affordable Care Act (ACA) undermines women’s health and children’s long-term success. Mothers take notice.

The House bill puts women’s financial security at risk.

AHCA makes deep cuts to tax credits that support people’s purchase of health coverage on the Marketplaces, making premiums less expensive for younger consumers and more expensive for older consumers who would be charged  five times more for their coverage. The National Partnership for Women and Families highlights that 6.8 million women and girls enrolled in Marketplace coverage in 2016, many of whom rely on tax credits to make health coverage affordable. Hikes in cost sharing paired with reductions in premium tax credits place women’s health coverage in jeopardy, potentially leading to gaps in coverage and access to needed care. It is worth highlighting that 42 percent of women are the primary breadwinners in their families—and black and Latina women face larger wage gaps relative to white men and are more likely to be single parents providing for families than white women. The ACA’s tax credits are critical to making coverage affordable for working women. Further, working women’s financial security is at risk because AHCA permits states to waive some of the ACA consumer protections. These waivers could include a ban on lifetime limits and caps on out-of-pocket costs; they could give employers increased flexibility in shifting medical costs to their employees—many of them women.

Finally, people with preexisting conditions are at risk of losing coverage and important benefits. While the need for care does not disappear, the cost of that care could shift to women and their families. The Center for American Progress reports that pregnant people could pay as much as $17,000 in surcharges for maternity care thanks to AHCA. Removing preexisting protections once again makes being a woman a pre-existing condition. It is important to pause and highlight the potentially egregious implications for women of the preexisting conditions loophole: sexual assault and intimate partner violence could be considered a preexisting condition, as could pregnancy, C-sections and post-partum depression.

The House bill guts Medicaid – a key coverage program for women and children.

According to the Kaiser Family Foundation, Medicaid provides coverage to 1 in 5 women, and approximately half of Medicaid enrollees are children. Importantly, Medicaid partners with Medicare to provide supplemental coverage to 1 in 5 senior women. The House bill guts Medicaid in three important ways: 1) it caps funding to state Medicaid programs; 2) eliminates the Medicaid expansion; and 3) adds a work requirement. Capping Medicaid and reducing federal funding by $839 billion will lead to rationing of services for vulnerable people due to strains on state budgets. This will translate into reduced services to support children with disabilities, reduced access for women to post-partum depression screening and treatment and reduced access to family planning services.

The ACA also offers a new and important pathway for women to continue to have access to needed services through Medicaid expansion—particularly following 60 days post-partum when new mothers lose traditional Medicaid eligibility. Elimination of the expansion places mothers and babies’ health at risk by restricting access to coverage. An added work requirement directs women to return to work 60 days after giving birth, placing both their health and their babies’ health at risk at a critical time of mother-infant bonding. The Center for American Progress highlights that the 60-day requirement does not even align with the 90-day standard the Families and Medical Leave Act (FMLA) established. Medicaid is critical to maternal and infant health. Denying women, particularly black women who die at a rate of more than three times of white women, access to prenatal care and robust post-partum access to care place both mothers and infants at great risk of harm. Studies show that continuous coverage through the prenatal and post-natal periods are critical in keeping families healthy.

The House bill denies families’ needed health benefits.

Under the ACA, women have access to needed benefits thanks to the essential health benefits (EHB).These benefits include pregnancy, maternity and newborn care, specifically, but also important benefits around mental health, substance use and pediatric care—all of which are vital to maternal and child health. A healthy mom makes a healthy family. The House bill, however, makes EHB negotiable, placing women’s benefits at risk by allowing states to redefine the EHB. According to the National Women’s Law Center, only 12 percent of health plans on the individual market covered maternity care prior to the ACA. Access to robust maternity and pediatric care is particularly important for African American women because they experience rates of infant mortality twice that of non-Hispanic, white women. Creating mechanisms to revise the EHB coupled with defunding Planned Parenthood is a reminder that the AHCA disproportionately affects women—and most notably, low-income women and women of color. Many low-income women rely on Planned Parenthood for important preventive care including birth control. In many places, Planned Parenthood is the sole source of contraceptive care for women – most notably for women living in rural areas.

The AHCA is no match for mothers.

Mothers across this country are not interested in these draconian attempts to vilify poverty and low-income people and deny families needed security and safeguards from medical debt and access to needed health services. Mothers will not stand by while members of Congress – many of who are not mothers – pursue policies that harm children and families. Use this Mother’s Day to take action and share your story as to why coverage matters to your health and that of your family.