Support and Resources for Addressing Health Inequity and Inequality in the US


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ByDeb Gordon
Edited byRae Osborn
ByDeb Gordon
Edited byRae Osborn

Updated: May 22, 2024

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The United States may be a land of opportunity, but when it comes to health and health care, too many people are left behind. Inequities related to race, gender, income and other factors are widespread and lead to gross disparities in health status and even life expectancy. Addressing these disparities is essential to improving the wellbeing of people in marginalized communities. Many advocacy organizations, health care providers and policymakers are working on reducing health disparities to improve equity and health outcomes. The implications of health inequities go far beyond individuals to impact society as a whole.

Health Outcomes by Race and Ethnicity

 

People of color experience worse health outcomes across a wide range of conditions. Income, health insurance status and overall access to care can all play a part in health disparities, as do bias and discrimination. Socioeconomic factors contribute to health disparities due to lack of access to quality care. Poor health also deepens economic disparities as people lose economic mobility due to illness.

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Lower life expectancy: Life expectancy can vary by as much as 30 years, depending on where you live and who you are. In 2021, Black Americans had an average life expectancy of just under 71, compared to over 76 for white Americans. Indigenous people, referred to as American Indians and Alaska Natives, had an average life expectancy of just over 65.

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Poor perceptions of health status: Approximately 20% of Black and Hispanic Americans and 25% of Indigenous Americans rate their health as fair or poor, compared with 14% of white respondents.

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Higher maternal and fetal death rates: Black women die during pregnancy or childbirth at a rate more than 2.5 times higher than white women. Mortality rates for Black infants are nearly 2.5 times higher than for white babies.

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Higher chronic disease rates: Black, Hispanic and Asian Americans were more likely to have diabetes than white Americans, and Black children were nearly twice as likely to have asthma as white kids.

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Less mental health care access: Among adults with mental illness, roughly half (52%) of white adults got mental health care services, while Black, Hispanic and Asian adults were much less likely to receive mental health care — 39%, 26% and 25%, respectively.


Understanding the Interplay of Health Inequity and Inequality

People often use the terms “inequality” and “inequity” interchangeably, but these terms have important differences. “Health inequalities” are differences in health status between groups, such as higher rates of certain conditions in one ethnic group compared to another. “Health inequities” refer to disparities that result from societal factors and structures, sometimes called “social determinants of health.” Both concepts are related and need to be addressed. For people without health insurance, accessing care can be difficult if not impossible. In turn, going without needed medical care can lead to poor health outcomes. Being uninsured is an inequity that leads to unequal health status.

VICIOUS CYCLE: HOW INEQUITY AND INEQUALITY FUEL HEALTH DISPARITIES

Asthma is a good example of how inequities and inequalities are intertwined. People with lower income are more likely to have asthma than those with higher income due to a range of factors. They're more likely to be uninsured and lack access to high-quality health care. People living in lower-income communities are also more likely to live in worse conditions and experience lower air quality, which can make asthma worse. People in poverty suffer disproportionate rates of conditions such as asthma.

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The High Price of Health Disparities

Health inequities are the result of a range of non-medical factors, often called “social determinants of health.” These factors include socioeconomic status, education, employment, housing and local community environments — all of which are interrelated. People living in poverty, for example, have less access to quality education, may have fewer economic opportunities and may live in worse housing conditions. People in unstable housing may have more difficulty getting or keeping a job, and people without jobs are more likely to be uninsured. This vicious cycle of inequity isn’t merely a set of unfortunate circumstances. Rather, many people in poverty face systemic discrimination, and people of color routinely face bias and discrimination.

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    Lower life expectancy

    The poorer you are, the more likely you are to die young. Data show that women in the bottom 1% of income live 10 years less than women in the top 1%. For men, the difference is 15 years. Similarly, people with lower educational attainment have shorter life expectancies than people with higher education degrees.

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    Higher infant mortality

    Despite improvements in overall infant death rates in the United States, infant mortality in Native Americans and Alaska Natives is 60% higher than in white infants. In 2019, nearly 11 Black infants per 1,000 live births died in their first year of life, more than double the rate of mortality in white and Asian infants, according to the CDC.

    Economic burden

    According to the National Institute on Minority Health and Health Disparities, the economic burden of racial and ethnic health disparities was $451 billion in 2018, or more than $1,300 per person. Those costs represent 2% of GDP. Costs were highest for Black Americans. Similarly, the cost of health disparities by education level is estimated to be $978 billion, nearly $3,000 per person, and 5% of GDP. Researchers measured the economic burden in terms of excess medical costs, lost labor market productivity and premature deaths.

    Harm to vulnerable groups

    LGBTQ+ people experience significant health inequities, including worse physical and mental health status. They’re more likely to report having difficulty paying their medical bills and many experience discrimination by healthcare providers. Costs and bias can keep LGBTQ+ patients from seeking needed care, which can worsen health problems. With approximately 20% of Gen Z identifying as LGBTQ+, if left unchecked, health disparities will become increasingly costly as this younger generation ages.

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    Worse mental health

    Overall, one in five American adults live with mental illness. Research shows that some groups experience compounding effects of poverty and inequity on mental health; people of color with mental illness are more likely to live in poverty, be unemployed, have been arrested in the past year and/or report being in fair or poor health overall. Further amplifying the burdens of mental illness, people of color are less likely to get treatment. Untreated mental illness further stigmatizes people and may exacerbate poverty by keeping them out of the labor force.

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Initiatives to Close the Health Equity and Equality Gap

The roots of health disparities run deep, but there are many people and organizations working to reduce inequities and inequalities. For example, government policies can expand access to health insurance, which can help improve access to care and reduce disparities. Nonprofit agencies work with individuals to help them access the care they need while also working to raise awareness about these experiences to try to reduce disparities for whole segments of the population.

Government Initiatives

Federal, state and local government agencies can play a major part in addressing health inequities and disparities. Some of the most meaningful advances in health equity have come through government policies to expand insurance coverage, protect vulnerable people from discrimination and fund services for people who need them most.

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Affordable Care Act (ACA)

The ACA, commonly known as Obamacare, did many things to help Americans get health insurance. The ACA protects consumers from rate or coverage discrimination based on gender or pre-existing conditions. It allows young adults to stay on their parent's plan until age 26. And it created the Health Insurance Marketplace. Through these marketplaces, adults without access to other insurance can buy high-quality individual health insurance, something that was hard to come by and harder to afford before the ACA. Through the ACA, approximately 20 million people who had previously been uninsured gained coverage in the first five years of the program. Of those, 11 million were people of color. By 2022, the total number of people covered by ACA changes increased to 35 million.

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Medicaid Expansion

One of the most important features of the ACA was the option for states to expand their Medicaid programs. Since 2010, 40 states and the District of Columbia have expanded their Medicaid program to cover people who earn up to 138% of the federal poverty level, according to the KFF. By 2022, nearly 20 million people who had gained coverage through the ACA did so via Medicaid expansion. Numerous studies have demonstrated the positive impacts of Medicaid expansion on access to care, insurance coverage, healthcare affordability, individual financial security, self-reported health status and state economies.

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Children’s Health Insurance Program (CHIP)

CHIP is the public insurance program for kids in families that earn too much to qualify for Medicaid but not enough to afford private insurance. In most states, families who earn at least up to 200% of the federal poverty level qualify. In many states, CHIP is administered seamlessly through the Medicaid program. CHIP was created through the Balanced Budget Act of 1997 and now covers nearly 10 million lower-income children who would otherwise be uninsured.

4
Americans With Disabilities Act (ADA)

The landmark disability rights legislation, the Americans with Disabilities Act (ADA), was signed into law in 1990. It has had sweeping impacts, protecting people with disabilities from discrimination in every aspect of American life. Some health conditions constitute a disability according to the ADA, ensuring protections for people with cancer, diabetes, HIV, traumatic brain injury, and mental health conditions such as post-traumatic stress disorder (PTSD) and major depression, among others. Additionally, the ADA requires hospitals and clinics to offer sign language interpreters and other support for people who are deaf or hard of hearing. The ADA also requires businesses that serve the public to provide equal opportunity to access the goods and services they offer, which extends to accessibility requirements for hospitals and other healthcare facilities.

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National Institutes of Health (NIH)

Historically, scientific research has lacked focus on diversity in study participants. As a result, there are large knowledge gaps about diseases and treatments in women and people of color. However, since 1994, the NIH has had a policy requiring its funded research to include women and people of color. Though inclusive research is a long-term approach to reducing health disparities, it is vital to first understand disparities.

Non-Governmental and Community-Based Initiatives

Nonprofit organizations and private institutions play important roles in addressing health disparities. Countless community-based organizations and health care providers offer programs to address non-medical barriers to health. These programs address everything from housing improvements and food to transportation and employment. Health insurers also increasingly offer programs to address social determinants of health.

Families USA

Families USA is a national, non-partisan, nonprofit organization dedicated to expanding access to high-quality, affordable health care and improved health for all. One of its focus areas is health equity, on the principle that “no one should face barriers to a healthy life because of who they are or where they live.” The organization works to achieve its mission by conducting policy analysis and advocacy. It also partners with organizations representing people of color, people with disabilities, people in rural areas and others to shape a policy agenda that addresses inequities and social determinants of health.

Community Catalyst

A national nonprofit and advocacy organization, Community Catalyst's mission is “to build the power of people to create a health system rooted in race equity and health justice and a society where health is a right for all.” The organization works toward a vision where everyone has what they need to be healthy and refers to equity as its “north star.” Community Catalyst advocates for reducing medical costs, expanding health coverage and benefits and making sure people can access trusted health care providers. Specific initiatives include work to expand Medicaid coverage and improve Medicaid benefits, raise state and national standards for private and public health insurance providers, and reduce limitations on access to health care providers, among others.

Institute for Healthcare Improvement (IHI)

The Institute for IHI is a nonprofit organization dedicated to health care quality and safety. IHI argues that “there can be no progress on quality without equity.” It offers health equity programming, including white papers and courses for health care professionals to guide health care organizations to improve health equity in their institutions and communities.

American Hospital Association (AHA) Health Equity Roadmap

The AHA developed this framework to guide hospitals and health systems to become more equitable and inclusive. The initiative includes an assessment tool that health care organizations can use to understand their current performance on health equity measures. It also offers tools and resources for improving patient care, organizational policies, leadership and governance.

Health insurer programs

Many national and local health insurers have created programs to reduce health disparities. For example, Humana’s Bold Gold program focuses on reducing food insecurity, isolation and loneliness and transportation barriers for its members. The Blue Cross Blue Shield Association, the association of independent Blue Cross Blue Shield companies, launched an initiative to reduce maternal health disparities, with steps such as expanding postpartum coverage and enabling access to birthing centers, doulas and nurse midwives. Because health insurers benefit when their members are in good health, most now have programs to tackle some form of disparity that worsens member health.

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Fighting Health Disparities: Strategies for Accessing Health Care

Everyone should be able to get high-quality health care delivered with respect. That’s not always the case. If you’re struggling to get the health care and coverage you need because of your identity or where you live, you can and should advocate for yourself. But you don’t have to go it alone. Know where and how to find help, resources and information to arm yourself with and the tools you need to overcome barriers.

Build Knowledge and Awareness

Health care information may seem dense, confusing and overwhelming. But the more you know, the more power you have. If you can get informed about your rights and options, you’re more likely to get what you need. Just knowing what questions to ask can give you authority and help you get support you might not get otherwise.

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ARM YOURSELF WITH KNOWLEDGE

If you feel overwhelmed by health care information, break it down. Make sure you understand the terminology and don’t be afraid to ask questions of your health care provider and/or your health insurer. Check the Healthcare.gov glossary.

Understand your insurance. Most coverage is governed by federal rules. You can learn more at Healthcare.gov or visit the Centers for Medicare and Medicaid Services (CMS) to understand your rights and benefits. You can also contact your state’s department of insurance or consumer protection agency. The Patient Advocate Foundation offers consumer-friendly health insurance information.

Seek Affordable Care Options

For people with limited financial resources, free or subsidized health insurance is available on the Health Insurance Marketplace. It doesn’t hurt to apply and see what subsidies you may be able to get. There are also community-based providers around the country that receive funds to provide free or lower-cost health care services. Don’t go without care or coverage — research resources for affordable options.

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DON’T ASSUME YOU CAN’T AFFORD HEALTH CARE

Health care is expensive. Everyone gets that, so there is no shame in looking for free or low-cost options. Look for the community health center in your area. Many community-based providers and nonprofit insurers offer truly high-quality care and coverage. Don’t assume you won’t be able to afford good quality.

Plan for Your Health Care

Depending on who you are, you may face extra barriers or have specific needs when it comes to your health and health care. For example, transgender people can face burdensome expenses if their insurance won’t cover gender-affirming care. Or, if you’re in a same-sex couple, you may have extraordinary expenses associated with starting a family. Plan and budget for your needs and seek support from organizations dedicated to helping people in your situation afford the care they need and deserve.

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PLAN FOR YOUR SITUATION

Gathering the financial resources to pay for the care you need can be tough, but it helps to make a plan. Knowing what you need can help you strategize. What can you save on your own? What resources are available to you from your state or local government? And what community-based groups, locally or nationally, may be able to provide resources? You don’t have to go it alone.

Find Providers You Trust

It may be easier said than done, but working with health care providers you trust can make a huge difference in the care you get. You’ll be more comfortable opening up about your needs and concerns, which will help your providers help you. Finding a provider who shares your racial identity may improve trust, according to research that shows patients feel better about the quality of care they receive when they get that care from a provider of the same race or ethnicity. But you may not need to see a provider who looks like you or shares your background to get the best care; other research shows that diverse care teams provide better care, even if the provider you see doesn’t come from your background.

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FIND A HEALTH CARE PROVIDER WHO GETS YOU

Like any relationship, you deserve to have a health care provider who you trust. You’ll be a more open patient, and they’ll probably provide better care for you.

Shop around to find a provider who fits. If you live in a place without a lot of options, or if your health insurance doesn’t give you many choices, that doesn’t mean you have no alternatives. Maybe there’s another provider in the practice or clinic that you could see. Or, try telehealth services to access a wider range of providers, at least for the care you can get remotely.

No matter who you see, take ownership of what you need and prefer. Voice those preferences to the provider. By asking for what you need, you’re more likely to get it.

Leverage Community Resources

No matter who you are, you are not alone. There are people like you and people who care about you out there working to make sure you get the health care you need and deserve. Community-based organizations exist to advocate for and support all kinds of people. Research the nonprofits in your area. The hospital or clinic where you get care may also know who can help.

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FIND YOUR COMMUNITY

Some of the best resources to help you get high-quality care will be right in your neighborhood. Community-based health care providers tend to hire diverse staff and connect with other community-based providers. If you feel like you’re not getting the care or treatment you need, especially if you feel like it’s because of your identity, find local organizations to help. You may also find patient groups on social media platforms that can point you to resources in your community.

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Accessing Health Insurance in the Face of Inequity

One of the most important ways to make sure you get the health care you need is to make sure you have high-quality health insurance. Too many people, though, lack affordable coverage. According to KFF, 27.5 million nonelderly adults in the United States were uninsured in 2021. People of color were most likely to be uninsured. Most uninsured people were in families with at least one full-time worker, with household incomes below 400% of the federal poverty level, or about $58,000 per year for an individual. Many earn less than 200% of the federal poverty level.

Despite the availability of reasonably affordable insurance options, the majority of people who are uninsured cite the cost of coverage as the main reason. Uninsured people were more than twice as likely to report trouble paying medical bills and may wind up going without care as a result. But there may be health insurance options if you know where and how to look.

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    Shop on the Health Insurance Marketplace

    The Health Insurance Marketplace at Healthcare.gov lays out government-approved health insurance options that include mandated benefits and consumer protections. Like millions, you may qualify for free coverage or heavy subsidies, making these options potentially more affordable than you realize.

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    Splitting up may get you better deals

    You may be able to save money or get better coverage by putting different family members on different types of coverage. For example, instead of automatically signing up for one partner’s employer-sponsored coverage, consider the Marketplace or Medicaid options for the other spouse and kids. Compare employer options if you have multiple options; each spouse may do better on their own plan.

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    Consider a high-deductible plan

    Unless you have extremely complex healthcare needs, you may save money by opting for a higher-deductible plan. That means you’ll need to pay out-of-pocket for your care until you meet the deductible, but you’re likely to save even more overall in monthly premiums.

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    Consult a helper

    Enrollment specialists at hospitals, community health centers and other nonprofit agencies are often extremely knowledgeable about local health insurance options. As insiders, they know who qualifies and how to get the best possible coverage.

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    Don’t overlook COBRA

    COBRA is the program that lets you buy your employer-sponsored insurance at full price for 18 months if you lose your job and your health insurance. COBRA can be pricey, but before you dismiss it outright, check. It may turn out to be a good value for excellent coverage. If you have doctors you like or if you have complex health needs, it may be worthwhile to stay connected to those services.

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    Look at direct primary care

    Direct primary care is a membership model where you pay a monthly fee for unlimited access to primary care. These practices don’t usually accept insurance. You still need insurance coverage for high-cost or catastrophic events, but for routine care, you may be able to get much more personalized care from a doctor who’s not beholden to insurance bureaucracy. If you’ve felt dismissed or diminished by the healthcare system, this can be a great solution to feel more connected and get the respect and attention you deserve

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    Avoid skinny plans

    So-called “skinny plans” that don’t meet ACA rules and coverage requirements can look cheaper than more robust coverage on a monthly basis, but buyers beware. These plans can leave you uncovered when you need it most. And many people can pay less on an ACA-compliant plan via the Marketplace because of subsidies. Don’t wind up paying more for less coverage.

Additional Resources

From research and policy organizations advocating for improvements to community-based organizations that directly help people from marginalized communities access care and other services, countless local, state and national organizations exist to improve health equity. Just a snapshot of available resources includes:

  • Commonwealth Fund: The Commonwealth Fund supports independent research and publishes high-quality reports on health care access, quality and equity. Its mission is to promote a high-performing, equitable health system that focuses on improving access and quality for vulnerable populations.
  • Urban Institute: The Urban Institute is a nonprofit research organization that publishes data to advance equity. Among its focus areas is federal health care reform, along with several other social determinants of health, such as housing, education and economic mobility.
  • Deloitte Health Equity Institute: An arm of the global firm Deloitte, the Deloitte Health Equity Institute aims to address disparities in the drivers of health, racism and structural flaws in the system. It publishes research reports, playbooks and data dashboards and tools to advance health equity.
  • AMA Center for Health Equity: The American Medical Association’s Center for Health Equity works to embed equity across AMA activities. It publishes guides and resources for medical professionals to improve awareness and practice of health equity principles and strategies.
  • Patient Advocate Foundation: The Patient Advocate Foundation is a national nonprofit organization that provides case management and financial support to people with chronic and serious illnesses. It publishes consumer-friendly resources and a financial resources directory.
  • Patient Access Network Foundation: The National Patient Access Foundation was founded as an advocacy organization alongside the direct support organization, Patient Advocate Foundation. It advocates for health system reforms to protect patient rights and partners with other advocacy groups and community-based organizations to create programs that improve access to and quality of care for all.
  • Community Catalyst: Community Catalyst is a national nonprofit organization dedicated to creating a health care system rooted in racial equity and health justice. It produces guides and other resources to help consumers manage their health care and supports advocacy efforts to advance health policy for better coverage and access to care.
  • Black Mamas Matter Alliance: The Black Mamas Matter Alliance is a national, nonprofit network of Black women-led organizations focused on ensuring Black women can thrive before, during and after pregnancy. The organization’s work includes advocacy, research and cultural shifts for Black maternal health, rights, and justice.
  • National Center for Cultural Competence: A program of Georgetown University, the National Center for Cultural Competence provides national leadership on cultural and linguistic competency in health and mental health care delivery, administration, education and advocacy. It provides training and consulting to organizations and publishes research, tools and resources to promote cultural and linguistic competency.
  • The Cross Cultural Health Care Program: The Cross Cultural Health Care Program is dedicated to serving as a bridge between communities and health care organizations to advance culturally and linguistically appropriate health care. It provides training and consulting to support culturally competent communication and practices within health care institutions.
  • Eidos LGBTQ+ Health Initiative at the University of Pennsylvania: The Eidos LGBTQ+ Health Initiative, housed in the University of Pennsylvania’s School of Nursing, connects community leaders, researchers, academics, business leaders, investors and entrepreneurs to improve LGBTQ+ health. It conducts research, education and community engagement “to further the sustained wellbeing of the LGBTQ+ community.”
  • Center for Excellence in Transgender Health: Part of the University of California San Francisco, this center provides training and education and conducts research to advance health equity for transgender and gender non-binary communities. It publishes studies, resources and guides to help providers and others effectively support transgender and non-binary patients.
  • LGBTQ+ Healthcare Directory: The LGBTQ+ Healthcare Directory is a free, searchable database of doctors, medical professionals and other health care providers in the United States and Canada who are knowledgeable and sensitive to the unique health needs of LGBTQ+ people. It is a project of the Tegan and Sara Foundation and GLMA – Health Professionals Advancing LGBTQ+ Equality.
  • Allies for Reaching Community Health Equity: This organization produces events and materials to help advocates and public health practitioners advance health equity in their communities.
  • Health Equity Tracker:The Health Equity Tracker from the Satcher Health Leadership Institute at Morehouse School of Medicine gathers and provides detailed data on health outcomes by race, ethnicity, sex and other factors. The Tracker aims to address health disparities by providing policymakers, community leaders and researchers with the data they need to make informed decisions to achieve health equity and justice for all.

About Deb Gordon


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Deb Gordon is the co-founder and CEO of Umbra Health Advocacy, and author of The Health Care Consumer’s Manifesto (Praeger 2020), a book about shopping for health care based on consumer research she conducted as a senior fellow in the Harvard Kennedy School’s Mossavar-Rahmani Center for Business and Government between 2017 and 2019. Her research and writing have been published in JAMA Network Open, the Harvard Business Review blog, USA Today, RealClear Politics, TheHill, and Managed Care Magazine.

Deb previously held executive roles in health insurance and health care technology services. Deb is an Aspen Institute Health Innovators Fellow and an Eisenhower Fellow, for which she traveled to Australia, New Zealand and Singapore to explore the role of consumers in high-performing health systems. She was a 2011 Boston Business Journal 40-under-40 honoree, and a volunteer in MIT’s Delta V start-up accelerator, the Fierce Healthcare Innovation Awards and in various mentorship programs.


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