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 | 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 8/20/2013 by Ailin Lu
During the past decade, climate change has been a major topic of concern and discussion. Much of the time, environmental ethics has been framed in terms of energy divestment, renewable resources and conservation of ecosystems. However, what is often overlooked is how industry disposal of hazardous by-products takes a toll on the health of many communities.
Despite the passing of Executive Order 12898 20 years ago under the Clinton Administration, poor living conditions persist in cities like Baltimore, which has experienced growing rates of asthma [PDF | 251KB] due, in part, to neighboring coal burning plants. These coal burning plants, among the largest in the Mid-Atlantic, are allowed to emit almost four times more sulfur dioxide (a compound that causes bronchoconstriction and increased asthma symptoms) than is recommended by the Environmental Protection Agency’s (EPA’s) National Ambient Air Quality Standard.
Environmental justice advocates argue that no community should disproportionately face more hazardous waste than another, but we find time and time again that low-income and majority minority communities are suffering more [PDF | 145KB] so from environmental build-up of toxins than any other demographic. It is indeed important to talk about creating less waste to preserve the integrity of Earth’s ecosystems for future generations, but it is also important to talk about environmental justice and recognize that current patterns of toxin build-up and disposal endanger the lives of people in present and future generations.
The unfortunate truth is that we typically aren’t aware or concerned about these issues until we see the negative effects in our own backyard. With this logic, it would make sense to expect low-income and majority minority communities to lead the push for environmental justice. However, these communities are also ones that encounter poverty, food deserts and unsafe neighborhoods – meaning they have limited community resources available to protest the building of industrial complexes in their area. In the end, the communities that suffer the most face additional challenges that prevent their voices from being heard.
Environmental pollution is a concern that, if left unaddressed, will continue to negatively impact the quality of life today and in future generations. It is one of many compounding factors that impact the health of vulnerable communities and widen health disparities. Working together to decrease environmental pollution will not only improve the health of the nation, but help to increase health equity in the U.S.
It is necessary to acknowledge the importance of environmental justice, because conserving our ecosystems is an integral way to preserve health. You can learn more and get involved by:
Posted in: Health OMH Promising Practices Health Disparities Health Equity 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 8/1/2013 by Dora Tao
According to estimates from the Centers for Disease Control and Prevention, 1 in 110 children in the United States is affected by Autism Spectrum Disorder (ASD), and the rates are rapidly increasing. ASD can affect human development in a variety of ways and may interfere with an individual’s social interactions. While no single cause of autism has been discovered, trends have shown possible relationships between ASD and certain other conditions such as Down Syndrome.
It can often be difficult for parents to realize that their child is autistic. Some children may, at first, appear to be shy or have difficulty focusing before receiving the diagnosis. Although relatively little is known about ASD, symptoms of ASD usually become most obvious during early childhood (2 to 6 years old). Diagnosing ASD can be complex, however, because many of its symptoms often coexist with other health problems such as seizures, gastrointestinal issues, sleep issues and attention deficit/hyperactive disorder (ADHD), and therefore may be associated with these other conditions.
An earlier diagnosis gives parents and medical professionals more time to build an education and therapy plan that will best cater to the child’s needs for the future. However, the social and environmental factors influencing autistic children can greatly impact their treatment plans and management as they grow into adulthood.
A recent study published in Pediatrics done by researchers from Massachusetts General Hospital (MGH), however, showed that there were racial and ethnic disparities in the number of autistic children who went to see a specialist. This study of over 3,500 autistic children found that while 37 percent of white children saw specialists, only 30 percent of African American autistic children received specialized care. The greatest disparity came in children who saw a gastroenterologist, with 14 of white children and only 10 percent of Hispanic children and 9 percent of African American children receiving care.
A 2002 study from the Journal of the American Academy of Child & Adolescent Psychiatry identified an additional inequality; Medicaid-eligible white children were usually diagnosed earlier than Medicaid-eligible minority children with autism.
Although exact reasons behind these findings were not cited in the studies, researchers from the MGH study have hypothesized as to why minority autistic children are less likely to receive specialized care. Possible explanations include health care accessibility and cultural competency issues that would prevent minority families from following up with specialists that they are referred to, and/or differing frequencies of doctor referrals to appropriate services. A paper that was published in early 2012 also found that there may be differences in autism symptoms between non-minority and minority children based on cultural and linguistic gaps between parents and health care professionals.
With the growing rates of ASD in the United States, it is important to notice the emerging disparities in our communities. We need to better understand some of the challenges that Hispanic and African American families may be facing when accessing services so that we can ensure that all autistic children are receiving the best quality care that they can.
To achieve wellness, it is important to consider social factors in addition to treatment and care in order to ensure health equity for all. Not only do we need to make health professionals more aware of the disparities that may be afflicting minority communities, we also need to ensure that minority communities are able to access all the services they may need.
Take action! End health and healthcare disparities among minority communities by joining the National Partnership for Action to End Health Disparities (NPA).
For more information about autism, please check out http://www.autismspeaks.org
Posted in: Health Minority Populations OMH NPA Partners NPA Partners Health Disparities African American Health Equity Hispanic/Latino Mental Health | Comments | Add a Comment | Comment Policy | Permalink
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