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 Youth | 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
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
About the Blog
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.
Recent Blog Posts
→ Health Atlas for the City of Los Angeles’s Health and Wellness Chapter
→ Changing the Prognosis for Sickle Cell Disease through the Affordable Care Act
→ Winning the battle against health disparities through new technology
→ Improving Data Collection on Native Hawaiian and Pacific Islander Health
→ 2013 Report to Congress on Minority Health Activities