NASHP’s Annual Conference Highlights States Taking Bold Action on Drug Prices
While Congress continues to consider significant reforms for drug pricing, states have taken bold steps to control drug prices across payers. This legislative session, Colorado followed Maryland’s lead and established a prescription drug affordability board (PDAB) to address high drug prices. PDAB legislation, such as Maryland’s and Colorado’s, that includes authority for a board to set upper payment limits (UPLs) within a state for high cost drugs, represents some of the strongest state efforts to date to rein in drug costs. The National Academy for State Health Policy’s (NASHP) 2021 annual conference featured a session highlighting Colorado and Maryland’s PDAB laws, as well as New York’s experience with enhanced negotiating authority with manufacturers for high cost drugs within its Medicaid program. New York’s success in achieving notable savings offers insights on implementation that can help guide states standing up PDABs.
Maryland’s Prescription Drug Affordability Board
Enacted in 2019, Maryland’s PDAB law was created to study the prescription drug market in Maryland and to protect consumers and the state from the high costs of prescription drugs. The Board has spent the past year analyzing Maryland’s pharmaceutical distribution and payment system and will report findings, along with policy options to lower costs, to the General Assembly by the end of this year. In September, Maryland issued its first round of invoices for the assessment on drug manufacturers and other entities along the supply chain to support the work of the state’s PDAB. Under the legislation, the PDAB can consider setting upper payment limits, implementing a reverse auction marketplace, and establishing a bulk purchasing process. If the Board determines it is in the interest of the state to establish a process for setting UPLs, the Board must create a plan of action for implementing the process that includes the criteria the Board shall use to set UPLs and submit the plan to the Legislative Policy Committee for its approval. If the plan is approved, the Board may begin setting UPLs for state purchasers in 2022, and for all purchasers starting in 2023.
Colorado’s Prescription Drug Affordability Board
In June 2021, lawmakers in Colorado enacted a law to create a PDAB with aggressive timelines that will enable the Board to begin setting upper payment limits for all payers as early as next year. The law has a transparency component that requires insurance carriers and pharmacy benefit managers to report certain cost and utilization information to the Division of Insurance. The Board will use that data to perform affordability reviews of drugs that exceed the wholesale acquisition cost triggers outlined in the law.
Beginning April 1, 2022, the Colorado PDAB may establish UPLs for up to 12 drugs each year. Colorado’s PDAB, unlike Maryland’s, does not require additional legislative authority to set UPLs, and UPLs will apply to all purchases of and payer reimbursements for a drug dispensed or administered in the state. Similar to Maryland, the Colorado PDAB will make policy recommendations to the General Assembly on strategies to improve the affordability of prescription drugs for consumers.
New York Medicaid’s Drug Cost Cap and Enhanced Negotiating Authority in Massachusetts
In 2017, New York enacted a law that gave the Medicaid program the authority to negotiate with drug companies for supplemental rebates if drug spending is projected to exceed an annual spending limit, which is based on a 10-year rolling average of the Consumer Price Index. If the state is unable to reach an agreement with a manufacturer, a drug may be referred to the Drug Utilization Review Board (DURB), which then conducts a value assessment of the product. When conducting a value assessment, the DURB can consider a drug’s affordability and net cost to Medicaid, value-based pricing, significant price increases, and/or the proportionality of price to therapeutic benefit.
Five years later, New York has had success with this approach. Since the law went into effect in 2018, the state has negotiated over 50 new supplemental rebate contracts with manufacturers, which have generated over $500 million in new supplemental rebates. The DURB has also completed three value assessments for the drugs Orkambi, Remicade, and Spinraza. The DURB used value-based pricing benchmarks from the Institute for Clinical and Economic Review (ICER) to guide the Department of Health on target supplemental rebate amounts for Orkambi and Spinraza and a domestic reference pricing approach for Remicade because two comparable biosimilars were on the market. As a result, New York’s drug cap is achieving additional rebates and reducing the growth of spending without limiting access to high-cost drugs.
Massachusetts has a program similar to New York’s which enables enhanced negotiating authority within its Medicaid program. If an agreement cannot be reached and the drug exceeds certain price thresholds, the drug can be referred to the Massachusetts Health Policy Commission (HPC) for review. To date, this approach has been successful in securing additional rebates without the need for HPC review.
For more information about state actions to lower drug costs, explore NASHP’s Comparison of State Prescription Drug Affordability Review Initiatives and legislative tracker.
Resources to Help States Improve Maternal and Infant Health
The Biden-Harris Administration continues to make investments in improving maternal and child health. The Department of Health and Human Services (HHS) recently announced a $350 million dollar investment to support safe pregnancies and babies. Funding, distributed through the Health Resources and Services Administration (HRSA), supports home visiting services for families, community doulas, data infrastructure, and infant health equity.
Explore the resources on this page to learn more about states’ efforts to improve maternal and infant health.
Home Visiting
- State Medicaid Financing of Home Visiting Services in Seven States
- Medicaid Financing of Home Visiting Services for Women, Children, and Their Families
- Public Insurance Financing of Home Visiting Services: Insights from a Federal/State Discussion
Doulas
Investments in Behavioral Health Service Systems: Top Three Emerging Themes from State Home and Community-Based Services Spending Plans
States, taking advantage of federal flexibilities and new federal funding, are implementing policy changes that seek to increase availability of and equitable access to behavioral health services. In anticipation of the one-year, 10% increase in the federal medical assistance percentages (FMAP), provided by the American Rescue Plan Act (ARPA), states have submitted spending plans to the Center for Medicare and Medicaid Services (CMS) outlining how they intend to use these one-time funds to invest in home and community-based services (HCBS) that aim to keep individuals out of high cost institutional settings. These proposals reveal priorities across states for investing in home in community based behavioral health services.
State behavioral health systems have been experiencing multiple challenges since before the onset of the COVID-19 pandemic: the opioid crisis is ravaging communities, mental health crisis services are not sufficiently available, and behavioral health systems face serious staffing shortages. The pandemic has brought these crises into focus. Since 2019, more than half of states saw a more than 30% increase in overdose fatalities, emergency department visits for suspected suicide attempts by teenagers and young adults increased by 31%, and according to the Centers for Disease Control and Prevention (CDC), 40% of adults surveyed this spring reported struggling with their mental health or substance use. This accelerated demand for behavioral health services and the heightened risks of working in healthcare settings during the pandemic have left states facing staffing shortages, in some cases so severe that institutional settings are experiencing full on crises. Five of Virginia’s state mental health hospitals temporarily suspended admissions in July, Oregon’s state hospital saw a 45% increase in direct-care staff on COVID-related leave between February and March of this year, and New York Governor Hochul declared a statewide disaster emergency due to healthcare staffing shortages in September. As such, states and the federal government are preparing to make considerable financial investments in home and community-based services, to both relieve stressors on institutional settings as well as to provide comprehensive behavioral healthcare at an accessible delivery point to Medicaid members.
Developing and Enhancing Mobile Behavioral Health Crises Response
Through ARPA, states see an important opportunity to improve behavioral health systems, with a particular interest in enhancing crisis response systems. Several state HCBS spending plans propose to use funds to develop and expand the capacity of mobile crisis response, and some states plan to use these funds to bolster supports to specific, underserved populations. West Virginia and New York’s propose expanding existing mobile crisis capacity to better serve individuals with intellectual disabilities, while Michigan and Washington plan to build out crisis response for children. Other states propose using funds to add crisis stabilization units and to use ARPA funds to implement 988, a nationally-accessible hotline for people in suicide and other mental health crisis situations, established by the National Suicide Hotline Designation Act of 2020.
Updating Technology and Data Infrastructure
State HCBS spending plans underscore the need to improve technological capacity in HCBS systems. Several states propose extending facility-based data such as admissions, discharge, and transfer notifications to HCBS providers; others, including Alabama, Maine, New Jersey, and Texas plan to provide grants to providers and/or families for assistive technology and broadband access. Several states, including Colorado, plan to connect and share data across state agencies and/or among providers to better track and coordinate services for the HCBS population. Similarly, Georgia plans to develop a comprehensive case management platform for all HCBS populations that would include a dashboard for outcomes and reporting, streamlining data collection and usage. Georgia also builds in funding to train staff on new technology. New Jersey proposes using funds to develop a public facing registry, to allow members and families to access information on their waitlist status, available services, wait times.
Investing in the Behavioral Health Workforce
State HCBS spending plans reflect widespread and increasing shortages in the behavioral health workforce. States propose multi-faceted approaches: a handful of states seek to implement permanent rate increases for some sectors of the HCBS workforce, and North Carolina, Minnesota, Vermont, New York, and others plan to raise rates for mental health and substance use disorder (SUD) providers specifically. As a shorter-term strategy, other states are taking a specialty pay approach, building in one-time hiring and sign-on bonuses for behavioral health and other direct care workers. States are also planning to allocate funds for training staff to encourage specialization in behavioral health, or to develop specific skills particularly in-demand in the field. For example, Iowa plans to provide training and scholarships for Crisis Response and Behavioral Health Technician certification. Michigan plans to provide loan forgiveness and internships for students in behavioral health who commit to working in behavioral health shortage areas.
COVID-19 and its related risks in institutional settings have heightened the need for care in the community for people with significant behavioral health needs. State ARPA spending plans reflect the tremendous demand for behavioral health services across states, as well as the growing need to address workforce and build more technological capacity for a sector that has long lagged behind physical health systems. Nearly all state HCBS spending plans have been conditionally approved by CMS, final versions are likely to change in response to CMS comment and guidance.
Case Study of California’s ACEs Aware Initiative
Download the case study.
This case study highlights California’s ACEs Aware initiative and its key elements. The ACEs Aware initiative provides education, training and clinical protocols for the state’s Medicaid program (Medi-Cal) providers on screening for ACEs and covers the cost of screenings and related services under Medi-Cal. The goal of ACEs Aware is to identify and improve the health and well-being of Californians enrolled in Medi-Cal and who have experienced ACEs and toxic stress, providing a sustainable path to integrating identification and response to ACEs and toxic stress into the state’s Medicaid program.
This case study is the latest in a series from a partnership between NASHP, the National Governors Association, the Duke-Margolis Center for Health Policy, and a former state policy leader from Building Strong Brains Tennessee.
Ensuring Sustainability and Reach of COVID-19 Vaccine Distribution
As part of a comprehensive effort to support state leaders as they navigate the COVID-19 response, the Duke-Margolis Center for Health Policy and the National Academy for State Health Policy (NASHP) convened a meeting in July 2021 with a geographically diverse set of state officials and national experts to share best practices and innovative approaches to increase COVID-19 vaccinations.
Though the landscape continues to evolve rapidly, the participants discussed several themes that remain relevant given the current state of the pandemic. Participating state officials discussed strategies to reach unvaccinated individuals and policy and operational shifts to living with COVID-19 as a constant rather than a crisis.
This issue brief includes a summary of the meeting discussion as well as additional details on specific state approaches, including:
- Identifying reasons for hesitancy and identifying effective, culturally responsive messaging to reach all populations
- Enhancing targeted partnership and outreach and including trusted messengers
- Reducing barriers to vaccine access in primary care settings
- Engaging communities and providing easy access
- Using financial strategies to incentivize vaccine uptake
- Navigating political and legal issues
- Improving the use of data to increase equitable access to vaccines
Washington Demonstrates Cost Savings and Improved Outcomes from Supporting Family Caregivers
Washington has been at the forefront of providing supports to family caregivers, in large part, because state policymakers have been able to demonstrate cost savings and improved quality of life. Washington’s Medicaid Transformation Project proactively supports caregivers of individuals likely to spend down to Medicaid long term services and supports (LTSS). It was designed after Washington’s Family Caregiver Support Program, (FCSP) which assesses caregivers and provides training, respite, and other resources. Robust data collected from these programs demonstrate that Washington’s investments in family caregivers have ultimately contained costs while improving the wellbeing of caregivers and individuals receiving care.
Proven Return on Investment
Washington’s comprehensive Medicaid 1115 waiver program, the Medicaid Transformation Project, has shown a return on investment since its inception in 2017. This waiver has two caregiver support programs: Medicaid Alternative Care (MAC), which serves caregivers of Medicaid-eligible individuals not using Medicaid LTSS, and Tailored Services for Older Adults (TSOA), which supports individuals and caregivers of individuals who are not yet eligible for Medicaid or are choosing to not participate in Medicaid, but likely to eventually need Medicaid LTSS. TSOA and MAC both offer similar benefits for caregivers, including:
- Caregiver assistance with household tasks, respite, home-delivered meals, and minor home repairs
- Training and education
- Specialized medical equipment and supplies
- Health maintenance and therapy supports, such as adult day centers and counseling
The dollar value of the benefits depends on the caregiver’s assessment. Caregivers are eligible for benefits if they receive a screening with TCARE, an evidence-based tool for assessing a caregiver’s own needs. Caregivers can receive up to $4,362 over a six-month period depending on their assessed level of need and care plan. Eligibility is determined primarily by age, income, and assessment, with more flexibility with income and asset limits than traditional Medicaid. Perhaps due to these flexibilities, more individuals and caregiver/recipient pairs have enrolled in TSOA than MAC. Enrollment in the program has been lower than anticipated, in part due to challenges reaching people who do not self-identify as caregivers.
| Eligibility for Medicaid Transformation Project LTSS Initiatives | |
| Medicaid Alternative Care (MAC) | Tailored Supports for Older Adults (TSOA) |
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Washington analysts determine cost effectiveness with a synthetic estimate projection, a method of statistical analysis that compares actual expenditures with projected expenditures if no program had been implemented. Though the waiver is still in progress, data from the first few years show that the program is succeeding in delaying Medicaid LTSS and preventing hospitalizations. Furthermore, survey results find high levels of satisfaction among caregivers and recipients. Washington’s evaluation is largely based on data from TCARE family caregiver assessments combined with data on emergency department visits, inpatient admissions, 30-day readmission rate, nursing home admission rate, and mortality rate.
Prior to the initiation of the Medicaid Transformation Project, Washington used data to demonstrate the cost-effectiveness of expanding its Family Caregiver Support Program (FCSP) in 2012. Under Washington’s FCSP, interested caregivers receive a TCARE screening. Subsequently, eligible caregivers receive support in finding local resources, training on caregiving topics, help with securing respite, and advice and support on specific challenges. This assessment strategy produces a range of data on caregivers and recipients of care and allows the state to establish a baseline from which to study the impact of the program. In an analysis of the FCSP expansion, Washington found that care recipients whose caregivers were screened following FCSP expansion were 20 percent less likely to enroll in Medicaid LTSS in the year post-screening, controlling for other factors. These results identified a return on investment using baseline and implementation data, demonstrating the value of the state’s investment in caregivers and serving as a precursor to the Medicaid Transformation Project waiver.
Multi-Faceted Approach to Support Caregivers and Reduce Medicaid Costs
Washington’s efforts on caregiver supports are multi-faceted to delay the need for Medicaid services. Both Washington’s FCSP expansion and its Medicaid waiver place an emphasis on identifying caregivers in need of support before more formal LTSS are needed and connecting them with resources. These initiatives align with other efforts Washington has taken to support caregivers and older residents, including the state’s Paid Family Leave program and its first-in-the-nation public long-term care insurance program. The combination of these supports, emboldened by robust data demonstrating their effectiveness, forms a cohesive caregiver support strategy that allows Washington to provide LTSS care while spending less per resident on Medicaid LTSS than the national average.
Acknowledgement: Thank you to Susan Engels, Office Chief, Home and Community Services, Washington State Department of Social and Health Services, for presenting much of this information to NASHP’s State Medicaid Policy Institute on Family Caregiving on June 16, 2021. This blog is part of NASHP’s RAISE Act Family Caregiver Resource and Dissemination Center and is supported by The John A. Hartford Foundation.
RAISE Family Caregiving Advisory Council Releases Report to Congress: September 2021 Meeting Summary
On Tuesday, September 21, the RAISE Family Caregiving Advisory Council met to discuss the release of the RAISE Initial Report to Congress and recognize the outstanding work of all those who helped make the report a reality.
Call to Order
Acting Administrator and Assistant Secretary for Aging of the Administration for Community Living (ACL) Alison Barkoff began the meeting by commending the council for their work in completing the report to Congress, especially under the challenging circumstances of the COVID-19 pandemic. This report is the first major step of the RAISE Act, and the recommendations serve as the foundation for the next step, the National Caregiver Strategy. Barkoff expressed her eagerness to move expeditiously on the National Caregiver Strategy and seize this opportunity to support America’s 53 million caregivers.
Overview of Report
Council co-chairs Nancy Murray, MS, Casey Shillam, Ph.D., and Alan Stevens, Ph.D. shared their appreciation for the report as the culmination of years of advocacy and two years of intense work with a wide range of stakeholders. While caregiver stories are intensely personal and unique, the report captures common themes across all caregivers. They also expressed their gratitude for the help that NASHP, ACL, and The John A. Hartford Foundation provided.
Following the co-chairs’ presentations, Barkoff shared a video featuring numerous caregivers speaking about their experiences with caregiving. Following the video, Barkoff spoke with two family caregivers featured in the video, Sarah and Debbi. Sarah discussed how important it is for caregivers to be engaged as partners in an individual’s care. Debbi shared the challenges and sacrifices she has made to serve as a caregiver to her son, but also the powerful bonds for her entire family that have formed through caregiving. She described caregiving as giving quality of life to others and said that it has enhanced her life in ways she could not have imagined.
Looking Ahead to the National Strategy Development
Jessica Schubel, Director of Affordable Care Act and Health Care for the Domestic Policy Council at the Executive Office of the President, shared the Biden administration’s priorities on family caregiving. She described how states can use the American Rescue Plan to expand home and community-based services (HCBS) by using funding to support telehealth, reduce waitlists, and pay for transition costs. Other possibilities to support family caregivers include paying for supplies and equipment, PPE, and in-home vaccination.
Two speakers from the National Alliance for Caregiving (NAC) followed Schubel. First, Mike Wittke shared how caregiving is a dynamic experience. As a result, it is important that the strategy receives ongoing attention to ensure it remains effective. Then, C. Grace Whiting of NAC shared the five pillars of the national effort to implement the RAISE Act:
- Awareness and outreach- not all caregivers identify as such and some resist the label. It is the responsibility of systems to reach out to individuals, not vice versa.
- Recognizing caregivers as partners- the CARE Act is a good start, but there are other opportunities to engage caregivers, such as those in the 21st Century Cures Act 2.0.
- Income security- caregivers would benefit from paid family and medical leave and wage replacement programs. Additionally, the Credit for Caring Act and universal family care would assist caregivers and recognize the value of their work.
- Family centered support- Important work is being conducted to engage the caregivers who are often forgotten, especially young caregivers. State actions like Maryland’s Caregiver Services Corps have helped during COVID.
- Research and data gathering- Actions like expanding the caregiver module of the Behavioral Risk Factor Surveillance System (BRFSS) and implementing the strategic plan created by the National Institute of Nursing Research would help with gathering robust, consistent data.
Closing Remarks
Alison Barkoff concluded the meeting by once again expressing her excitement for the release of the report and for this opportunity to change the landscape for caregivers. She ended the meeting by expressing that the strategy will recognize the hard work of caregivers to let others live with dignity and independence, with the hope that the report will make caregiving sustainable.
For individuals living with complex, often chronic conditions, and their families, palliative care can provide relief from symptoms, improve satisfaction and outcomes, and help address critical mental and spiritual needs during difficult times. Now more than ever, there is growing recognition of the importance of palliative care services for individuals with serious illness, such as advance care planning, pain and symptom management, care coordination, and team-based, multi-disciplinary support. These services can help patients and families cope with the symptoms and stressors of disease, better anticipate and avoid crises, and reduce unnecessary and/or unwanted care. While this model is grounded in evidence that demonstrates improved quality of life, better outcomes, and reduced cost for patients, only a fraction of individuals who could benefit from palliative care receive it. 
