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.  

Comedian Jimmy Kimmel continues to make headlines following his moving monologue last week in which he revealed his son was born with a congenital heart defect. Since the news coincided with the House GOP effort to pass the American Health Care Act, Kimmel used the moment to make an impassioned plea to Congress not to pass a bill that excludes people with preexisting conditions from health care coverage. On Monday night, he doubled down on those comments and said any new health care law should have to pass the “Kimmel test,” meaning “No family should be denied medical care, emergency or otherwise, because they can’t afford it.”

Diane Pickles can empathize with Kimmel’s experience and concerns. She too is a parent whose child was born with a heart condition. On Monday, she was a featured speaker at a press conference Community Catalyst co-hosted with Senator Ed Markey (D-MA) and our partner organizations in Massachusetts, Health Care For All and Health Law Advocates. Diane’s comments moved many in the audience to tears. She spoke about her family’s struggle to keep her son covered so he can get the care he needs, and her worries about what the future could hold for him—and millions of others of families – if the GOP health care repeal bill passes the Senate. Her remarks follow.

My name is Diane Pickles. I am a resident of Haverhill, Massachusetts and a long-time volunteer for the American Heart Association. My younger son, Jake, was prenatally diagnosed with a congenital heart defect called Hypoplastic Left Heart Syndrome in 1994. The doctors told us he had half a heart, that he would most likely not survive, and we were given a pamphlet for a clinic in Witchita, Kansas where – for one more week in the pregnancy – we could still seek an abortion. 

Jake’s survival 22 years ago was nothing short of a miracle and he is among the oldest survivors for his heart defect. We are incredibly blessed, but it came with a tremendous amount of worry, sleepless nights, heartache, and gray hairs from three open heart surgeries -- at three days, six months, and two years; countless emergency room visits; many hospitalizations; chronic illness; and daily stress.

When Jake was four-years old, my husband and I found a way for me to return full time to work. This felt like our second miracle because it gave us a chance to try to make our way out of the medical debt we had incurred from tremendous out of pocket costs despite our private insurance. But, more importantly, it gave us the chance to enroll in a new insurance plan – one without a lifetime cap.  At that time, at the age of four, Jake was more than halfway to the $1 million lifetime cap we had on our current plan. One more surgery or ICU admission, which was always a looming possibility and he easily could have been over that cap. One major monkey was off our backs. We still worried about losing our child, but we didn’t have to worry about losing his insurance coverage.

Jake is now 22 years old. He has since been diagnosed with another condition – an immune deficiency. He will remain on our insurance for four more years.  At that point, he will need to move to his own insurance policy. Will he be insurable?  What if he can’t work for a period of time due to his heart condition and lapses coverage? If he has to pay a higher premium due to his pre-existing conditions, will he be able to afford it? And what about lifetime caps? The prognosis for Jake’s heart, although no one can tell us when it will occur, is likely heart failure and a transplant. The estimated cost for a heart transplant is $1 million – however, for single ventricle patients like Jake, the costs are higher -- some estimates as high as $4 to $6 million.  His immunotherapy infusions currently cost $20,000 a month. His last cardiac catheterization cost $35,000. His twice-annual routine visits to the cardiologist cost several thousand dollars.  Do the math and you’ll see how quickly my young son would be uninsured and forever uninsurable with a lifetime cap and pre-existing condition exclusions.

If you think Jake is an exception or unusual story, I assure you he is not. 

To our members of Congress: If you have never known the pain of worrying that your child may not outlive you, I pray you never will. If you like me have come close to losing a child, you know that it is enough for you and that child to worry about their mortality without worrying about whether an insurance company will deem your precious child an acceptable and worthy risk.  

It deeply saddens me that House of Representatives told us last week that Jake is not an acceptable or worthy risk, though I am profoundly grateful our delegates were not among them.

To the members of the Senate, I want to say this: So many people have prayed and hoped for Jake over the last 22 years, and I am eternally grateful. But today, hope and prayers are not enough. Don’t tell Jake and all those like him that this country miraculously saved his life through medical advances but will no longer provide the coverage he needs to continue his care. Reject any version of a health care law that would allow – in any form – a lifetime cap or a penalty for pre-existing conditions. His life and so many others literally depends on it. Today it is not enough to pray for my Jake. Today we must stand up and act.

Thank you.

Diane Pickles is a vice president at M+R. She lives in Haverhill, Massachusetts with her husband Bill and sons Jake and Matt.

There is no need to take up too much space here reviewing the ugly particulars of the American Health Care Act (AHCA) or the devastating consequences if something like it eventually becomes law. You can find excellent roundups here and here. It is true there are some less-well-understood implications of the legislation, such as the fact that if any state receives a waiver from the Essential Health Benefits requirement it could affect coverage for people with employer-sponsored insurance in every state. However, by now, the main provisions of the bill – a dramatic scaling back of the assistance that makes health insurance affordable – are well known.

How did a worse-than-bad bill pass the House after defeat in round one?

So instead of a bill recap, let's focus on how what was arguably an even worse bill than the one that failed in the House a few weeks ago managed to pass, and how that story helps inform what might happen next in the Senate. The unfortunate but inescapable conclusion is that it is precisely because the bill was worse that it was able to pass.

The intensity and consistency of the farthest right members of the House Republican caucus was not matched by the more amorphous and individualistic concerns of the House "moderates." In the AHCA’s initial outing, the more centrist members of the Republican caucus did not have to shoulder full responsibility for the failure of the bill to advance. However, once the Freedom Caucus got on board by further undermining consumer protections, the full weight of blocking repeal fell entirely on the "moderates," who became susceptible to the following arguments:

  • If the House didn't advance a bill, the optics would be bad. After all, they had been promising "repeal and replace" for seven years.
  • Even if the "replace" part was not what House members had in mind, the Senate would fix it later.
  • Cutting taxes in the health care bill would help them deliver a big tax cut to the wealthiest households and make their tax code overhaul easier.

These arguments, combined with the fig-leaf of protection the Upton amendment provided, and perhaps not wanting to be on the wrong side of leadership, Trump and the Koch machine all at once, gave just enough members the cover they were looking for. They could ignore the massive protests back home, pass the bill and celebrate in the White House Rose Garden.

Don’t assume the Senate will “save the House from itself.”

There are a few takeaways from this story as we contemplate the future of ACA repeal in the Senate. First, disregard the common assertion that the Senate will "save the House from itself," or at least take it with a very hefty dose of salt. Although the Senate has its own dynamics that differ from the House’s, there are also key similarities. There are also procedural hurdles to overcome if "fixing the bill" extends beyond adjusting the insurance market changes to fixing the Medicaid provisions and restoring the cuts in premium assistance.

With respect to political dynamics, the Senate has its own right-versus-far-right divide. And just like in the House, the far-right members (Cruz, Paul and Lee) are much more comfortable acting as spoilers than the so-called moderates who don't like the ACA, even if the changes they seek are somewhat more modest. As it turned out, the House "moderates" were a pretty cheap date. There is reason to be concerned that many in the Senate who have expressed concerns will settle for modest, and mainly cosmetic, changes. It's also worth noting that Cruz and Lee are both on the work group drafting the Senate bill, but none of the most consistent critics – Collins, Cassidy, Murkowski or Capito – are included.

This is particularly true with respect to Medicaid. Under the AHCA, not only would cuts in reimbursement force many states to abandon the coverage gains of recent years, but capped funding also would squeeze states' abilities to maintain services for children, people with disabilities and older adults. (These are the cuts Paul Ryan has been dreaming of making since long before the ACA ever became law.)

However, despite all of the talk about the Senate writing its own bill, as a technical matter they are writing a substitute, not a truly new bill. The difference matters. Whatever changes the Senate makes cannot have any less of a net deficit reduction than the House. If the Senate wants to fix the Medicaid section, or for that matter, do better than the House with respect to premium tax credits, they also have to come up with the money – either by scaling down the tax cuts for the rich or by coming up with new spending offsets.

While a few Senators have expressed the opinion that most of the ACA taxes need to stay to pay for coverage, any move in this direction would probably lose at least all three of the farthest right members, and probably many more. Coming up with a new offset is hardly any easier, and could be even more problematic.

Senators who object to the Medicaid provisions of the bill have mainly expressed concerns about the timing of the phase out of the enhanced match for the Medicaid expansion. But if they seek to delay the phase out (let alone restore the enhanced match), the most likely place for them to go for an offset would be to cut the core Medicaid program even MORE. This would be a bad deal for beneficiaries. The end result would be that the expansion still goes away while the additional Medicaid cuts make things worse for seniors, people with disabilities and low-income families.

Added to these problems is the fact that not many Republican Senators are up for reelection in 2018, which may attenuate their sensitivity to voters concerns.

Keep up the pressure!

Although the situation is serious, it is by no means hopeless. It is likely that at least two Senators are already locked into opposition, (probably one from each camp – Collins and Paul). It only takes one more dissenter from the moderate wing to force changes. In addition, a new CBO score will remind senators and the public just how bad this bill is. Finally, the opposition was still gathering steam as the House vote was taking place. We cannot discount the breadth and power of this opposition.

To sum up, making improvements in the AHCA in the Senate will be much harder than many people imagine, but it is not impossible. Now is the time to redouble our efforts to mobilize resistance to the current legislation if we are going to avoid a catastrophic rollback of health and economic security.  

With thanks to Quynh Chi Nguyen, policy analyst, for her assistance.

Thirty weeks. That’s how long we - concerned consumers, advocates and stakeholders - sustained a grassroots movement that forced Congressional Republicans to show us their cards before repealing the Affordable Care Act (ACA). Eight weeks. That’s how long it took Paul Ryan and House Republicans to pass a bill that would drastically reshape the American health care system by gutting Medicaid, striping more than 20 million people of their health insurance and dismantling the most important consumer protections in the ACA.

House Republicans might claim victory today, but we know that there’s nothing worth celebrating in a bill that would:

  • Cut Medicaid funding by $839 billion forcing states to raise taxes, lower payments to doctors and take away health coverage from children, seniors and people with disabilities.
  • Give the wealthiest Americans a tax break while throwing at least 24 million low- and moderate-income families off of their health coverage.
  • Allow insurance companies to charge older adults five times more for the same coverage as a young adult.
  • Undermine efforts to address the opioid crisis.
  • Reverses a long- standing commitment to protect low-income children by allowing states to cut benefits, roll back eligibility and deny children comprehensive preventive care needed to stay healthy.
  • Give states permission to get rid of the Essential Health Benefits that cover vital services like maternity care and mental health services.
  • Weaken the ACA’s protections against catastrophic costs for people with employer-sponsored coverage.
  • Gut the protections for people with preexisting conditions by sending us back to the days when insurance companies could charge people with preexisting conditions more for their coverage.

Paul Ryan and President Trump claimed they would repeal the ACA immediately after the inauguration. They didn’t. Next, they were certain it would be on the president’s desk by President’s Day. It wasn’t. Then, it was destined to pass the House on the ACA’s anniversary. It didn’t. Surely, by April recess it would be ready for the Senate. Never happened.

We’ve stopped it before, and we will stop it again. The AHCA is bad for the American people, and it’s time that the U.S. Senate hears this loud and clear.