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 9/19/2013 by Eric Yurkovich
Los Angeles is a city with many health disparities and where residents live often determines their health destiny. A recent study on health conditions in Los Angeles found that low-income communities such as South Los Angeles and Boyle Heights face disproportionate rates of obesity, asthma and violent crime. Geographic location is such an important determinant of health that a person born and raised in Watts can expect to die 12 years sooner than a person born and raised in Brentwood.
The city of Los Angeles’ new planning effort seeks to reduce the consistent gap in health outcomes by elevating “health equity” as a priority for the city. Los Angeles is among the first of cities nationwide to launch the creation of a Health and Wellness Chapter, a high-level policy vision of health that will be embedded in the City’s General Plan, which serves as the city’s planning constitution for long term management and development. Through this effort, the city is prioritizing community health and establishing policies to make Los Angeles a healthier place to live, work and play.
The Health and Wellness Chapter is an important recognition that health happens in communities. A Los Angeles resident who lives in quality housing in a safe community with good schools, open space and access to affordable, healthy food and good jobs has greater opportunities to thrive. Recently, LA’s Health and Wellness Chapter project team released the “Health Atlas”, which provides a data-driven snapshot of health in Los Angeles.
The Health Atlas [PDF | 163 MB] articulates the baseline health conditions in the city and provides a context for understanding how demographic conditions, social and economic factors, the physical environment, access to health care, and health behaviors contribute to the health of Los Angeles residents. The report maps and analyzes over 100 health indicators and identifies where health issues are concentrated, illustrating the opportunity to address health through better community design.
The maps and data will help guide the creation of a new Health and Wellness Chapter for the general plan. It will also be used to target community outreach, with a focus on vulnerable groups and the areas with the greatest health disparities to include their needs in planning for healthier communities.
A draft of the Health and Wellness Chapter will be available for public review in early 2014.
Learn more about the Health and Wellness Chapter .
Posted in: Health NPA Partners Promising Practices Health Disparities Prevention Health Equity Minority Health | Comments | 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 9/10/2013 by Alice Dalton
How do we create interventions that can encourage all members of society to be more physically active and eat better diets? It’s a knotty question with many different factors to be considered. One basic element is where the interventions are. We’re pretty sure that good neighborhood design, with well-located resources, can reduce health disparities associated with poverty. However, an intervention is less likely to improve minority health if it’s not accessible to those most in need. I investigated this using the English ‘Healthy Towns’ communities, a group of ethnically diverse towns and cities, including neighborhoods in London, experiencing poverty and ill health. The government had funded health promoting infrastructure in these places. I tested a technique for spatial equity analysis to help us understand what infrastructure was put where, for whom and why.
This technique can be used to identify resource gaps and suggest locations where interventions should be located to address health disparities. The process is relatively straightforward, but you need to be thorough when collecting your evidence. It’s not just a case of drawing, say, a one mile circle around existing play parks and claiming that children living in these areas are well-provided for and those outside aren’t. For example, some locations have more children living there, therefore a higher demand. Or, parks may be plentiful but underused because of their poor quality or poor access. These considerations are crucial for directing infrastructure and other interventions to where they’re needed most.
Overall, this work indicated that spatial equity analysis can be useful as the first step in future evaluations for health interventions, especially when it’s too early to measure direct health impacts. In the case of the ‘Healthy Towns’ program, we found that interventions were generally well-located in areas of highest population need, as determined by program managers. This is a good start, but we’ll need to wait to see if the aims – to make people more active and healthier eaters – will be met.
You can read the full article here .
Posted in: NPA Partners Promising Practices Health Disparities Prevention Health Equity Research & Evaluation | Comments | Add a Comment | Comment Policy | Permalink
Posted on 8/22/2013 by Stefanie Brown James
When I was a kid my mother would often tell me, "You know, you don't have anything if you don't have your health." And my response would be, "Yeah, ok, Mom…whatever." Why would I, a young girl full of energy, ever think about a day when I wouldn't be in good health? My horizon was bright and I believed that nothing – especially my health – would keep me from achieving my dreams.
Once I graduated from college however, I realized the flaw in my thinking. It wasn't so much how I viewed my own health, but the lack of appreciation I had for the safeguard that supported me all along – my parent's' health insurance.
My first job out of college was with a nonprofit organization in Baltimore that offered amazing healthcare benefits. But like most young adults who take leaps into pools without water, I soon grew tired of "working" and decided that I would move back home to figure out my next steps. Unfortunately, there was one major thing I failed to calculate with my move back to Cleveland: I couldn't pack up my health insurance and take it with me!
This was in 2005, five years before the Affordable Care Act allowed children to stay on their parents' health insurance through their 26th birthday. As an unemployed 24 year old, I suddenly realized that I didn't have the safety net I unknowingly relied on all my life. Even when I landed a job at a temp agency, it didn't provide health coverage, let alone a salary that would allow me to purchase my own insurance.
Now, eight years and a number of jobs later, I run my own consulting company in DC and a leadership organization for young black women called Brown Girls Lead . I'm finally conquering the goals that I laid out for myself – especially living a life as an entrepreneur with the ability to chart my course on a daily basis. But taking creative risks has come with its own set of challenges. At times I have lived without insurance, and I always knew that a random fall or a sudden illness could set me back – especially financially.
With the implementation of the Affordable Care Act, young people who want to live life to its fullest are able to do so without the fear of getting sick and not being able to afford a visit to the doctor. Thanks to the ACA, 97,000 young people in my home state of Ohio gained health insurance. In addition, more than 500,000 African Americans between the ages of 19 and 25 will now have coverage under their parents' employer-sponsored plan or if they individually purchase a health plan. They are now free to explore different kinds of work, take creative risks and follow their dreams with the knowledge that they'll have a health care safety net beneath them.
So whether you're a young adult at a start-up company or a baby boomer ready to start a second career as an entrepreneur, take comfort in knowing that the Affordable Care Act is there to care for you.
Posted in: Health Disparities Prevention Affordable Care Act/Health Care Law Health Equity Youth | Comments | Add a Comment | Comment Policy | Permalink
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The NPA works to achieve health equity -- the highest level of health for all people. This blog is a venue for professionals from all fields and sectors to share their thoughts on pressing issues, news and events pertaining to health equity. Follow and participate in this candid discussion.
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