Blog: National Partnership for Action
Posted on 9/27/2013 by Coleen A. Boyle, PhD, MSHyg, and J. Nadine Gracia, MD, MSCE.
A generation ago, almost 15 percent of children in the United States born with sickle cell disease died before the age of two. Many more died in their teens. 1
Today, babies born with sickle cell disease face a far more promising future. Children and adults can benefit from treatment options that help mediate complications of the disease. According to data from CDC's National Vital Statistics System, the proportion of deaths from sickle cell disease among children decreased from 12 percent in 1979 to approximately 3 percent in 2006. Since the signing of the National Sickle Cell Anemia Control Act 41 years ago, considerable progress has been made in biomedical research, disease surveillance, and care coordination.
But as patients and families know all too well, barriers to care and quality treatment persist. Between 90,000 and 100,000 people in the U.S. currently live with sickle cell disease, making it the most common inherited blood disorder in the country. Minorities bear a disproportionate burden, with the disease occurring in roughly one out of every 500 African American births and one out of every 36,000 Hispanic American births. And far too many have struggled to access the quality care that they need to manage the disease and live a healthy life.
That began to change three years ago, with the passage of the Affordable Care Act.
By directly addressing barriers to care and coverage, the Affordable Care Act has created new opportunities for those living with sickle disease to access affordable, high-quality health insurance and medical services – opportunities that many may never have had before.
Because of the law, sickle cell disease and other pre-existing conditions can no longer be grounds for denial of coverage from health insurers – a provision of the law that would provide security to 129 million Americans with pre-existing conditions.
Young adults living with sickle cell disease can now stay on their parents' health insurance until the age of 26, ensuring smoother transitions from pediatric care to adult care.
In addition, screening for sickle cell disease among newborns is now one of the preventive services covered at no cost under the Affordable Care Act. Thanks to the law, approximately 71 million Americans can now access these screenings and other important preventive services without having to pay a co-pay or deductible.
The law is also helping community health teams to explore new opportunities for improved disease management through the Centers for Medicare & Medicaid Services' (CMS) Innovation Center – and expanding access to care through investments in community health centers, where nearly two-thirds of patients served are people of color.
Meanwhile, agencies across the Department of Health and Human Services are working to make the most of these opportunities. At the Centers for Disease Control and Prevention (CDC), researchers are studying how sickle cell disease is managed at the community level through a state-based project called PHRESH (Public Health Research Epidemiology and Surveillance of Hemoglobinopathies). Using data collected from the program, CDC is helping states build capacity to monitor health system changes stemming from the Affordable Care Act – giving them the tools they need to identify the most effective interventions, highlight quality measures, and zero in on the "hotspots" of chronic conditions where they are needed most.
At the Office of Minority Health, one of the office's strategic priorities – leading the implementation of the first-ever HHS Action Plan to Reduce Racial and Ethnic Health Disparities – includes strengthening the cultural and linguistic competency of the health and health care workforce to improve health care quality and reduce health disparities. And as implementation of the Affordable Care Act continues, the Office of Minority Health's outreach and education efforts in minority communities are helping to reach those living with sickle cell disease and others who stand to benefit most from the health care law.
Three years after its passage, the Affordable Care Act has touched the lives of millions of Americans – including the thousands living with sickle cell disease. And this is just the beginning. On October 1, millions of Americans will have a chance to enroll in affordable health insurance coverage through the new Health Insurance Marketplace, with coverage beginning as early as January 1, 2014. While the fight against sickle cell disease continues, the health care law is giving patients and families affected by sickle disease unprecedented opportunities for improved care and expanded coverage – and new hope for a healthier future.
Learn more about the Affordable Care Act and the Health Insurance Marketplace at www.healthcare.gov.
Posted in: Health Minority Populations OMH Promising Practices HHS Health Disparities Partnership Federal Prevention Affordable Care Act/Health Care Law African American Asian American Health Care Health Equity Hispanic/Latino Promotores/Community Health Workers Research & Evaluation | Comments (1) | Add a Comment | Comment Policy | Permalink
Posted on 8/21/2013 by J. Nadine Gracia, MD, MSCE
Cross-posted from the Huffington Post blog.
Recently, I traveled to Oakland, California, to participate in a town hall about how the Affordable Care Act is improving health and strengthening communities - especially communities of color that have long faced disparities in health and health care.
As the event was coming to a close, a woman in the audience stood up and asked if she could read a letter from her daughter. Her daughter hadn't been able to attend the event, she told us, but wanted to share her story with everyone.
She had started college a few years later than most, at the age of 22. During her freshman year, she was diagnosed with rheumatoid arthritis - a devastating discovery. But there was one source of relief: thanks to the health care law's provision enabling young people to stay on their parents' health insurance until the age of 26, she was able to stay on her parents' health plan, access the treatment that she needed, and continue her studies. And even though she has since turned 26, the opening of the new Health Insurance Marketplace - and the law's ban on discrimination due to pre-existing conditions - will provide her with new opportunities to secure affordable coverage.
The last excerpt that the woman read from her daughter's letter was directed to President Obama. Thank you, she wrote. The health care law had helped to save her life.
There are many ways we can measure the impact of the Affordable Care Act - from the more than 500,000 previously uninsured African American young adults who have gained coverage from a parent's health plan, to the 10.2 million uninsured Latinos who will be eligible for coverage through the Marketplace, to the 7.3 million African Americans and 8.2 million Latinos who already had insurance but can now receive preventive services, such as diabetes and cancer screenings, at no extra cost.
But perhaps the most powerful measure of the law's capacity to change lives and lift communities comes from real-life stories such as the one I heard in Oakland. Beyond the numbers and the reports, these may be the most telling testaments to what the Affordable Care Act means for our communities: security, peace of mind, the opportunity to lead a healthy life - and the freedom to pursue our dreams.
To learn more about the Affordable Care Act and the Health Insurance Marketplace, visit HealthCare.gov.
Follow Sec. Kathleen Sebelius on Twitter: www.twitter.com/Sebelius
Posted in: OMH HHS Affordable Care Act/Health Care Law Health Equity | Comments (1) | Add a Comment | Comment Policy | Permalink
Posted on 8/2/2013 by Joy Liu
We would all like to believe that where you are born does not determine or sentence your fate, but that’s only partially true. Birthplace can limit the care a newborn receives, the quality of nearby education or access to healthy food choices. Increasingly, researchers are also finding evidence of biological connections between early life experiences (including those inside the mother’s womb) and long-term health.
Last year, as I spent time conducting a research study on neonatal mortality in rural India and observing procedures at a tertiary-care hospital in the U.S., it became clear to me that the circumstances of one’s birth determines so much of what happens afterwards. As I walked through the neonatal intensive care unit listening to the beeping and hissing of machines that kept children who could fit into my palm alive, I was singularly aware of the great separation that exists after the moment of birth.
I was struck that the health of those babies is related to both the nutrition and stress levels of their mother while in the womb and access to health care once they are born. Many of the neonatal deaths I documented in rural India were attributable to factors linked to the types of stressors that preconception care tries to address.
This summer, during my internship with the Office of Minority Health Resource Center, I’ve written and edited resources for the Peer Preconception Educators program (PPE). The program seeks to train college students as peer educators on topics related to preconception health.
Preconception health care helps women and men take steps during their reproductive years to protect the health of a baby they might have in the future. Critically, it fills the gap between conception and access to prenatal care. Nearly one-fifth of pregnant women who give birth in the U.S. don’t receive prenatal care before the end of the first trimester, a figure that jumps to over a quarter for minority groups such as African Americans, Latinas and American Indians. Yet by that time, most of the developing fetus’ major organs have already formed. It also misses a critical window between four and 10 weeks of pregnancy when the fetus is most sensitive to maternal conditions and environmental exposures.
For many mothers, prenatal care begins too late to take essential steps in order to ensure the best possible birth outcome for their children. This problem is compounded by difficulties in accessing preconception care, particularly for non-pregnant, low-income women who don’t qualify for Medicaid.
The Affordable Care Act (ACA) has recently offered new opportunities for preconception care. In addition to requirements that health insurance plans must cover women’s preventative services, at least one well-woman preventive health visit is covered annually, which includes preconception care. Other highlighted services include screening for gestational diabetes, testing and counseling for HIV, and screening and counseling for domestic violence. All are key components of the PPE curriculum and critical services for women’s health.
If we truly want to talk about ending health disparities, reducing infant mortality rates or giving every child in this country the same opportunity to be all that they can be, we need to actively promote preconception care. After all, why should circumstances before and during birth determine a person’s future?
Posted in: Health Minority Populations OMH HHS Health Disparities Federal Affordable Care Act/Health Care Law African American American Indian & Alaska Native Health Care Health Equity Hispanic/Latino Infant Mortality Minority Health Preconception Health Preconception Peer Educators Women's Health | Comments | Add a Comment | Comment Policy | Permalink
Posted on 7/24/2013 by Jeremy Hsiao
You probably know someone who is affected by mental illness.
According to the National Institute of Mental Health, one in four Americans currently suffer from a mental illness, and one in two will suffer from a mental illness in their lifetime. These statistics do not include the family, friends and community who are deeply affected by their loved ones' mental illness. Here at the Office of Minority Health, we are elevating the importance of this issue as a part of Minority Mental Health Awareness month.
During my freshmen year at the University of Maryland, I became involved with an on-campus organization called Active Minds. Active Minds' goal is to promote positive mental health while fighting the stigma associated with mental illness.
One of the first events that we put together was "Send Silence Packing." The centerpiece of this national event is 1,100 backpacks representing the number of college students that commit suicide annually. Some of the backpacks being displayed are the actual backpacks that these college students left behind. Family and friends will add stories and memorabilia so that whoever looks at the backpack can imagine the person that it was once attached to.
During that event, there was one backpack in particular that stood out. It belonged to a former student, John. John was rock climber, and a great student – sociable and beloved by everyone. His backpack must have had 50 or so personal letters from friends and family, each describing a precious memory they had of him. Those stacks of letters were all laminated and bound to the backpack by a single ring that seemed to be overwhelmed by the memories. Also attached to the backpack were pieces of rock-climbing equipment that he so often used with his buddies. It was obvious that John's backpack never looked like this when he was using it, but I have never been able to imagine anyone more vividly than John that day.
As I moved on, I recognized a woman looking at display in the far corner of the room. It was my 10th grade Earth, Space and Science teacher, Mrs. Suzanne Martin. When she saw me, she immediately gave me a hug and asked how I was adapting to college life. Mrs. Martin looked younger with her new hair style and she was as energetic as I ever remembered. When I asked her what she was doing here, she looked away and said, "I will show you". She took me to the entrance of the room and pointed to a backpack.
She took me to John's backpack. Suzanne Martin was John's mother.
At this point, I realized that I knew someone who was affected by mental illness.
Luckily, there are resources available for people living with mental health issues as well as their family, friends and caregivers. President Obama and Secretary Sebelius recently launched the website mentalhealth.gov, which examines mental health from many angles. The website includes the following mental health resources:
Join me and the Office of Minority Health to become part of the movement to promote positive mental health.
*Names have been changed.
Posted in: HHS Federal Mental Health Minority Mental Health Month Youth Peer Educators | Comments | Add a Comment | Comment Policy | Permalink
Posted on 7/12/2013 by Tyler White
'Clean air' is a concept that resonates with Akeelia Adams-Smith, a mother of two living in the north side of St. Louis, MO. She and her children suffer from asthma and symptoms that are often triggered by poor air quality. Akeelia has started following recommendations to ensure that her family has healthy air quality within their living space, and is now taking action to reduce outdoor pollution.
Akeelia is one of many concerned African American parents in her community. According to a study by the St. Louis Regional Health Commission, black children in north St. Louis are approximately seven times more likely to visit the emergency room for asthma than white children.
Akeelia and others shared their stories during the Clean Air Health Fair on April 27 to raise awareness around the issue of air quality. The event was hosted by Mt. Carmel Missionary Baptist Church in St. Louis with support from the National Climate Action Plan, and the Heartland Regional Health Equity Council under the National Partnership for Action to End Health Disparities, led by the U.S. Department of Health and Human Services Office of Minority Health. The fair, which was attended by public officials, advocacy groups, academics and local faith leaders, was designed to raise awareness about climate change and how it will impact the health of St. Louis residents, with special attention to air quality.
Speakers included EPA's Region 7 Administrator, Karl Brooks, who highlighted the link between the changing climate and poor environmental conditions, such as reduced air quality. Spurred by the commitment that President Obama made during his second inauguration to minimize the health impacts of climate change, Mr. Brooks emphasized a renewed commitment by the EPA and other federal agencies.
Other speakers included Rev. Earl Nance Jr. of Mt. Carmel Missionary Baptist Church, Dr. Roger Lewis of St. Louis University, St. Louis County Assessor Jake Zimmerman and Akeelia Adams-Smith. Whether from a faith-based organization, academia, public service or the community, the speakers united under the common goal of promoting scientific literacy and minimizing the impacts of climate change and poor air quality.
The remarks of each speaker were extremely encouraging, conveying broad and scientifically complex topics in a way that was relevant to the specific needs of the community. Moreover, the active engagement of the attendees with speakers and organizers represented the type of dialogue that gathers people from all walks of life to address the multi-faceted causes of health disparities.
Several organizations and partnerships committed to addressing climate change and asthma in the St. Louis area participated in the event. Through handouts, trivia and conversations, community members and church attendees received facts on climate change and air quality. More importantly, they received resources and information on steps they can take to minimize their energy consumption and protect their health and the health of their loved ones. Among the resources provided were mattress covers, water bottles, guidelines for home weatherization, example emergency plans for extreme heat and weather events, and instructions on checking air quality and minimizing asthma triggers.
The organizations providing helpful information at the fair included:
Get involved with environmental awareness initiatives in your community! Find out more about this issue on the Healthy People 2020 website or the Environmental Protection Agency's Environmental Justice webpage.
Posted in: NPA Reports Health Minority Populations OMH NPA Partners Promising Practices Successful Events HHS Health Disparities Partnership Federal African American Health Care Health Equity Minority Health | Comments | Add a Comment | Comment Policy | Permalink
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