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Ed. note: This was originally published on The Sullivan Alliance Leadership Blog.
I recently had the opportunity to participate in DHHS’ celebration recognizing the 30th anniversary of the release of what’s now referred to as “The Heckler Report.” The report was developed thanks to Secretary Margaret Heckler who recognized the “sad and significant fact… [that] there was a continuing disparity in the burden of death and illness experienced by Blacks and other minority Americans as compared with our nation’s population as a whole.” Secretary Heckler created the national platform that made the issue of minority health disparities a national issue – but I’d like to share a little of the history that led her to create the “Heckler Report” which has shaped minority health policy for the last 30 years.
Walter Bowie (Dean, Tuskegee), Ralph Cazort, MD (Dean, Meharry Medical School), Anthony Rachal (Vice President, Xavier University) and I (Morehouse School of Medicine) founded the Association of Minority Health Professions Schools (AMHPS) in 1977. These four individuals came together with the purpose of working together to develop and promote programs that were (and remain) important to improving minority health status.
We were soon joined by the other health professions schools from the HBCUs (Drew, Florida A&M, Hampton, Howard, and Texas Southern). AMHPS now included colleges of medicine, dentistry, pharmacy and veterinary medicine. The common thread that bound us was our interest in creating more African-American health professionals in these fields. We soon added Latino, Hispanic American and Native American programs to our priorities.
In the early 1980s, we commissioned a study that was led by Dr. Ruth Hanft. The study entitled “Blacks and the Health Professions in the 1980s: A National Crisis and A Time for Action” was a concise report that clearly showed the shortage of minorities in the key medical professions. The health status of Blacks was worse than Whites and we needed greater support in order for that to change. We wanted to make this issue a national priority.
In March 1983, Al Haynes (Charles Drew), David Satcher (Meharry), Walter Bowie (Tuskegee) and I met with Secretary Heckler to inform her about the AMHPS study’s key findings. She was very positive and agreed to review the study closely and get back to us soon. As we left the meeting, we had mixed feelings because although we were well received, we weren’t sure if she really meant it.
But a month later, she let us know that she was setting up a Secretarial Taskforce lead by Dr. Thomas Malone, Deputy Director of the National Institutes of Health, and Dr. Katrina Johnson. Dr. Robert Graham (first administrator of HRSA) was a prominent member of the Taskforce. We were heartened by this development. And two years later in August 1985, Secretary Heckler released the “Report of the Secretary’s Taskforce on Black & Minority Health” that both affirmed our report and extended far beyond it.
Based on the report’s recommendations, DHHS’ Office of Minority Health was created by Secretary Heckler within a year and Dr. Clay Simpson was appointed as the office’s first director. Creating OMH got a lot of attention and helped to set the tone. It began a cascade of Federal-level activities that focused the nation on minority health.
In 1990, during my tenure as U.S. Secretary of Health and Human Services, I created the Office of Minority Health at NIH which first evolved into the Center for Minority Health and Health Disparities, then in 2010 with Congressional legislation, became the National Institute on Minority Health and Health Disparities (NIMHD).
And there are many other examples of the growing prominence of minority health, including the two seminal reports published by the Sullivan Commission and the Institute of Medicine (IOM) in 2004. We can’t ignore the disparities that still exist – such as the low percent of African American scientists who have received NIH research grants – but much has improved.
The Heckler Report was a significant historic touch point for the nation. That’s why it’s so appropriate that DHHS is celebrating its 30th anniversary. Whenever I see Margaret, she always reminds me that the AMHPS report and our meeting focused her on the issue of health equity. It’s good to be a part of the history that made this issue a national priority. With today’s U.S. demographics, these long-standing and recalcitrant disparities have become everyone’s issue, and not just a minority issue.
Louis W. Sullivan, M.D. is the Chairman and Chief Executive Officer of The Sullivan Alliance to Transform the Health Professions.
Hardly anyone knew that 28-year-old Monique Gore-Massy was sick on her wedding day in 2008, but just two months earlier, she had been diagnosed with lupus.
Before then, Monique had been coping with symptoms such as fever, chronic body pain, swelling of her joints, hair loss, shortness of breath and mouth sores without understanding why. First she was prescribed antibiotics and then told she was suffering from a viral infection. After nearly a year of confusion and misdiagnosis, Monique was finally diagnosed with lupus.
Unfortunately, Monique’s experience is all too common. A recent study found that a majority of people with lupus surveyed (63 percent) reported being incorrectly diagnosed. Of those reporting incorrect diagnosis, more than half of them (55 percent) said they had been to four or more different healthcare providers for their lupus symptoms before being accurately diagnosed.
Even though an estimated 1.5 million Americans have lupus, knowledge about the disease remains staggeringly limited, with nearly two-thirds of the public having little or no knowledge of lupus. The disease is unpredictable and can damage any organ from the skin or joints to the heart or kidneys. Lupus is also two to three times more prevalent among women of color compared to white women.
That’s why this May, Lupus Awareness Month, the Lupus Foundation of America launched the KNOW LUPUS campaign to bring greater awareness of lupus and increase support for lupus research. The campaign features a series of television public service announcements which include testimonials and statements from people with lupus and celebrity advocates. The centerpiece of the campaign is an online, animated and interactive game to test people’s knowledge of lupus and drive support ford lupus research.
For people like Monique, there is no normal. Every day might bring a different challenge, a new medical complication or a new side effect from harsh medications. The Lupus Foundation of America is constantly working toward a future with NO lupus, but to achieve it everyone needs to KNOW lupus. Spread the word. Get involved and help us solve this cruel mystery.
To learn more, visit: www.lupus.org/know.
Nicole Dueffert is the Communications Director at the Lupus Foundation of America.
As the daughter and granddaughter of immigrants from Haiti, I have a deep respect for the rich traditions of the generations that preceded me. My family’s elder women – especially my late maternal grandmother and my mother – have been great matriarchs and their lessons are too important to forget. We should also not forget that celebrating and valuing our family history means helping to address the health challenges our seniors face.
Across the lifespan, the health status of racial and ethnic minorities has often long lagged behind that of whites, and this is no more plainly evident than with minority seniors who oftentimes battle multiple chronic illnesses. For older women of color, the impact of health disparities can have a greater impact for a variety of reasons including language barriers and access to affordable, healthy food to ensure proper nutrition. Poverty and cultural norms that often differ from their health care providers can be major challenges to promoting health and wellness in their later years.
And now, on the 80th anniversary of the Social Security Act, the 50th anniversaries of the Medicare and Medicaid and the Older Americans Act, as well as the 30th anniversary of the Report of the Secretary’s Task Force on Black and Minority Health, we are at another pivotal point in the health of our nation. This moment is being shaped by the most significant legislation in a generation that will help to reduce health disparities: the Affordable Care Act.
An estimated 12.5 million women of color – 5.1 million black women, 4.9 million Latinas, and 2.5 million Asian American women – with private health insurance now have guaranteed access to women’s preventive services including well-woman visits, mammograms, domestic violence counseling and other services without any out-of-pocket costs. This type of access is especially critical for minority women who are less likely than white women to receive preventive services such as osteoporosis, cancer and diabetes screening, as well as flu and pneumococcal vaccinations.
While access to affordable, quality health care through the Affordable Care Act is a monumental start, it is one factor in a complicated set of issues that impact our goal of realizing health equity in America. We are making strides in addressing these issues and enhancing the health care experiences of older women of color through initiatives and policy standards such as the National Standards for Culturally and Linguistically Appropriate Services in Health and Health Care. Equally important, is ensuring that our mothers, grandmothers, aunts and other loved ones have access to programs like From Coverage to Care. This valuable resource can help seniors fully understand their benefits and find health care services, which is crucial to helping them live their longest – and healthiest – lives.
Addressing the challenges and opportunities ahead for older women of color is not work that any one person, group or organization can do alone. It is a collective effort, and we as a nation – across public and private sectors, must pull together like a tightly knitted quilt to advance the work that remains to be done. In the same way that it takes a village to raise a child, it takes us all to achieve better health for women of all ages.
For more information, visit www.minorityhealth.hhs.gov.
Ed. note: This was originally published on The White House Conference on Aging Blog.
On April 24, I was honored to represent our nation’s older women in a roundtable discussion hosted by the White House Council on Women and Girls.
The meeting, “Promoting Equal Futures across the Lifespan,” brought together leaders from the fields of aging, health, abuse in later life, and financial security to discuss key issues affecting older women, complementing the 2015 White House Conference on Aging.
I was joined by Deputy Director for Minority Health Dr. Nadine Gracia, Acting Social Security Commissioner Carolyn Colvin, and Nora Super, Executive Director of the White House Conference on Aging. Kicking off the conversation, Executive Director of the Council on Women and Girls, Tina Tchen, spoke of the commitment of the Council to address inequalities and barriers facing women and girls of all ages. Tina’s leadership in expanding our national dialogue on women and girls to include older women sets an example I hope others will follow.
I say this because all too often, conversations about women and girls do not include older women. If we look across the lifespan, however, we see that many of the challenges older women face are the same barriers they encountered earlier in their lives: wage discrimination; unequal expectations of caregiving and raising children; higher costs of health care; violence and abuse. Gender disparities exist regardless of age and can be intensified by discrimination based on disability, sexuality or gender identity.
For example, Dr. Gracia pointed out that women of color often face food insecurity, along with the stress and expense that comes with managing multiple chronic conditions. “Health disparities can be exacerbated by cultural and language barriers for minority women, as well as reduced access to health care,” Dr. Gracia said.
Adding to these challenges is widespread financial insecurity for many older women. As Carolyn Colvin explained, “Because of their greater longevity, women are at greater risk of exhausting their savings. While income from other retirement programs and savings may run out, Social Security benefits continue for life.” Social Security is truly a lifeline for some older adults—mostly women—who rely on this as their only source of income.
Good health and economic security are undermined by abuse. The more we learn about elder abuse, neglect and financial exploitation, the more we understand that elder abuse predominantly impacts women—and that’s not simply because women outnumber men as they age. In fact, one of the most common forms of violence against older women is abuse by an intimate partner or spouse, which can include economic coercion or fraud. And, just as women and girls with disabilities are victimized at higher rates, older adults with severe dementia and Alzheimer’s disease are at increased risk of experiencing abuse.
Last month, I addressed this issue as part of the U.S. Delegation to the 59th United Nations Commission on the Status of Women, highlighting the urgent need for data collection that counts women and girls of all ages and abilities. As a vital support to so many families around the world, we must eliminate negative stereotypes that depict older women as burdens, rather than honoring them.
Older women—mothers, aunts, and grandmothers—are the backbone of our families and communities. Their lifetime contributions to the success and well-being of children and grandchildren; to our economy and our workforce, deserve special recognition.
Thanks to the White House Council on Women and Girls and all who joined us at the roundtable, older women are becoming more visible.
Kathy Greenlee is the Assistant Secretary for Aging and Administrator of the Administration for Community Living (ACL) at the U.S. Department of Health and Human Services (HHS). ACL brings together into a single entity the Administration on Aging, the Office on Disability, and the Administration on Developmental Disabilities.
I was working the evening shift at a Crisis Unit in a Community Mental Health Center in California. A young adult female was brought in by her family. She was severely ill with psychosis and was nine months pregnant – and her Chinese-speaking parents had no awareness of either condition. Later that evening, an elderly African American man with a lengthy history of institutionalization for mental and substance use disorders was brought in – in handcuffs – by the police for disorderly conduct. He was homeless and disoriented. He was cleaned up, given a meal and some meds and then discharged. Early the next morning a Latino couple could be seen rejoicing in the hall, having found their 21 year old son who was removed from their home by the police when summoned by a neighbor for hallucinations and disruptive behavior. With limited English proficiency, the couple searched for three days but because of privacy regulations, hospitals were not allowed to tell them if he had been admitted.
These are routine stories of ordinary people and families from different cultures trying to understand mental and substance use disorders and navigate a confusing health care system. These are stories from the early 1980’s. Now, three decades later, some things are the same, but much has changed. The Report of the Secretary’s Task Force on Black and Minority Health (also known as the Heckler Report) highlighted the inequities in access and quality of care for individuals and families from diverse and underserved racial and ethnic minority populations.
For behavioral health, especially mental health care, there was much misunderstanding, misdiagnosis and miscommunication between providers and recipients of care. Pathways to care became divided into two branches with young people and adults of color more likely to be referred to child welfare and criminal justice rather than to specialty behavioral health care. As a result, more ethnic/race-specific community-based organizations were developed to address the cultural and class-specific behavioral health needs of these communities, and the federal government took steps toward ensuring better behavioral health services for racial and ethnic minorities.
In 2001, then US Surgeon General Dr. David Satcher issued the report Mental Health: Culture, Race and Ethnicity which underscored the poor access, treatment and outcomes for people of color with mental health disorders. Research continued to show similar prevalence of these disorders across populations, but very uneven access to appropriate care, thus creating a substantial burden in these communities. In 2003, the President’s New Freedom Commission on Mental Health reiterated the imperative to reduce disparities in behavioral health care and the Substance Abuse and Mental Health Services Administration (SAMHSA) was charged with addressing these disparities and the recommendations of the report. And in 2010, the SAMHSA Office of Behavioral Health Equity was created by the Affordable Care Act.
SAMHSA also provides critical funding for minority and vulnerable populations, an outcome of the HHS Action Plan to Reduce Racial and Ethnic Health Disparities. And, through its National Network to Eliminate Disparities in Behavioral Health consisting of over 750 community-based organizations addressing the mental and substance use disorders in communities of color around the country, SAMHSA works to build capacity in these organizations and provide a platform to promote collective impact to reduce disparities.
Looking back, we can see how these advances in behavioral health grew out of the Heckler Report, started us on a path to understanding health and health care as a civil right and laid the basis for the new approach to social determinants of health and achieving health equity for all.
Larke N. Huang, PhD is the Director of the Substance Abuse and Mental Health Services Administration Office of Behavioral Health Equity.
The Substance Abuse and Mental Health Services Administration (SAMHSA) is the agency within the U.S. Department of Health and Human Services that leads public health efforts to advance the behavioral health of the nation.