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 9/18/2013 by Amirah Abdullah
A world free of disparities in health and health care, where all people are able to attain the highest level of health, may appear utopic. However, this is the vision of the Southeastern Health Equity Council (SHEC) for the states of Alabama, Florida, Georgia, Kentucky, Mississippi, North Carolina, South Carolina and Tennessee. These states are comprised of a diverse population, with some groups demonstrating an increased risk of adverse health outcomes, and many residing in rural locations that restrict access to care.
To achieve its vision of health equity, the SHEC is collecting and utilizing data to outline the challenges and opportunities facing the region. Data is a powerful tool that can illuminate issues, inform decisions, and portray the impacts of such decisions.
As an intern working with the SHEC, I have had the opportunity to contribute to their latest efforts to improve the health of the population by increasing awareness on state-level policies and practices related to health care access, healthy food choices, and cultural competency. From June through August 2013, I researched data in 12 domains using 19 indicators to help answer questions about the physical environment, food choices, health behaviors, diversity in the health care workforce, and health care coverage affect an individuals’ lifespan, with the intent to generate a regional health equity report card.
This report card, which will be available this fall, will present detailed data by race, ethnicity, gender, sexual orientation, urban/rural location, and disability, which will be used by the SHEC for the first time to inform local policy makers. It will allow a look at several domains across multiple demographic measures at the same time, to generate a much needed holistic response to resolving health disparity issues. The SHEC will emphasize health disparity indicators and gaps in existing data to illustrate the importance of collecting data from minority groups. The SHEC developed the report card using Healthy People 2020 goals (where available), year comparisons, and national comparisons to grade each indicator.
Although the SHEC region is known to have some of the poorest performing states in the nation, the data never cease to provide compelling evidence of unequal burdens of disease in our communities. The Southeast represents 19 percent of the total population in the country. Yet in 2010, this region accounted for 21 percent of heart disease mortality nationally, with factors such as obesity, diabetes, and hypertension affecting this population at a substantially higher rate than other areas of the country.
A health equity report card could not come at a more opportune time, with the ongoing national discourse about health care access and reducing the costs of health care. In spotlighting the disparities in the Southeastern region of the country, we create a unique opportunity to educate local and national policy makers, and generate discourse that can influence health outcomes in the region for the better.
We can effectively point policy makers toward decisions that improve healthy food choices, enhance health care access and promote well-being. We also create the opportunity to specify populations and issues that merit the attention of state and local policy makers and communities. Over time, we have a real opportunity to look back in time and ask – “did we make the grade?”
The development of the SHEC health equity report card is an exciting first step in making this vision a reality. However, it is important to remember that we must all play our parts in making the states in the Southeast a healthier place to live.
How do you grade progress on health disparities indicators in your state or region? Let us know by commenting below.
Posted in: Minority Populations NPA Partners Promising Practices Health Disparities Federal Prevention Data & Statistics Health Equity Minority Health | Comments | Add a Comment | Comment Policy | Permalink
Posted on 9/11/2013 by Pamela Ascon
You are in a foreign country and your child is feeling sick. You rush her to the hospital and want to quickly speak to a doctor. Instead, you are given a long form asking many questions in a complete different language. You ask for help, but no one seems to comprehend your heavy accent.
This is the reality that my family and I encountered when visiting medical facilities for many years. As a child who had recently arrived to America, I attempted to act as a translator between the doctor and my mother with the few vocabulary words that I had learned so far in school. I remember my mother’s face emanating discomfort with her inability to fully express her feelings and concerns.
I now understand that the helpless look on my mother’s face was a true reflection of the challenges consistently encountered by many minority populations.
Some of the most significant barriers between healthcare providers and patients are language and cultural differences, which can play a crucial role in patient health outcome. If patients have a hard time communicating with their healthcare provider, this can lead to errors in diagnosis or treatment. With the ample range of cultures in the United States, patients’ cultural beliefs are of equal importance. If a patient’s belief interferes with their treatment option, the clinician should respectfully accommodate the patient while ensuring that they have a successful health outcome.
In 2050, it is estimated that the minority population will account for almost half of the U.S population [PDF | 283KB], underscoring the necessity of culturally and linguistically appropriate approaches. To inform these approaches, the U.S Department of Health and Human Services has recently released the Enhanced National Standards for Culturally and Linguistically Appropriate Services in health and health care, also known as the CLAS Standards. This blueprint guides implementation to advance and sustain culturally and linguistically appropriate health services. It also highlights the importance of providing quality and equal health services to minorities.
Currently, CLAS Standards are being utilized to improve operational functions within the workplace by equipping culturally and linguistically competent staff to serve the needs of the populations that they serve. CLAS Standards improve quality of care and patient safety while decreasing the liability risk for health care providers. They will ultimately prepare health and healthcare organizations to meet the needs of minorities while improving health care quality.
Therefore, I encourage health and health care organizations to adopt and implement CLAS Standards. Working as a team, we can narrow the cultural and language gaps within the health care system and eliminate a major barrier to achieving health equity in the nation.
Posted in: Health Minority Populations Promising Practices Health Disparities Federal CLAS Cultural & Linguistic Competency Health Care Minority Health | Comments | 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
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