Moderated by Rick Badie
When it comes to transplants, kidneys are the most sought-after organs. My friend, a three-time kidney recipient, needs one now that his body has begun rejecting the one his younger brother gave him 15 years ago. Here’s his story, one shared by many Georgians in need of donors. Companion essays continue the health theme — one on a health disparity based on zip codes in our city, the other on biotechnology ethics.
Thousands wait for kidney donors
Every Monday, Wednesday and Friday, a machine cleans Matt Schneider’s blood and removes waste products. It’s a three-hour process that taxes the body and heart.
“Dialysis is very draining,” he told me. “You can only eat and drink certain things and amounts that can mess with your energy as well. I have to schedule my life around dialysis. If I want to go away for vacation, I have to schedule with a clinic in that area. If they are booked, I can’t go there.”
Schneider was born with Prune Belly syndrome, also known as Eagle-Barrett or triad syndrome, which is defined by a particular set of physical problems some children are born with. The major medical issue for Schneider was his kidneys, which at birth functioned at only 10 percent. He was 11 when he had his first kidney transplant, followed by two more.His mother was the first to donate in August 1987, followed by his father in October 1994 and a younger brother five years later. Now, at 38, that third transplant has failed him, and the Mets fan and Alpharetta resident has been on dialysis since mid-January.
I met Schneider years ago at Camp Braveheart, a summer getaway for cardiac kids held annually at Camp Twin Lakes in Rutledge. He’s veteran of medical camps. He volunteers for Camp Independence — a camp for young people who have kidney disease, received an organ transplant or are on dialysis. And he’s a fixture at Camp Second Chance, which serves transplant recipients, candidates and families. He joined the Braveheart family in 2002, where he’s known for his selflessness.
“He can do just about anything, and the teens look up to him,” said Shannon Antinarella, the director of Camp Braveheart. “He strikes that perfect balance between being a friend and being that adult role model who is going to tell them what’s best, while being sincere and honest.”
The average life span of a donated kidney is about 10 to 15 years and can be higher if it’s from a living donor. Schneider’s last kidney functioned for 10 years before it began to fail, causing his health to decline. Colds lingered, and he felt run-down.
Rather than be confined to dialysis, which offers a life expectancy of five years, he wants a new kidney and has taken proactive steps to procure one. “Matt’s Kidney Page” tells his story and links readers to information regarding organ donation and kidney transplantation.
On Tuesday, Schneider had lunch with a retired professor from Berry College, his alma mater. She needs a second donor and, like him, has hopes for transplant success.
“If everyone signed up to be an organ donor,” he said, “there wouldn’t be a waiting list. I want people to know that they can help. Living donors can help, too. There are almost 4,700 people waiting on a kidney in Georgia. We can find that many donors. I want to help everyone waiting.”
Visit www.facebook.com/mattskidneypage for more information.
Creating a healthy life for all
By Karen Minyard and Mary Wilson
It’s just a few miles from Buckhead to Vine City, where the Rev. Martin Luther King Jr. lived as an adult. But when it comes to health, the communities are worlds apart. If you are born in Buckhead, you can expect to see your 84th birthday, but for babies born in Vine City, only their 72nd.
This staggering disparity was made clear in a new map released recently by Virginia Commonwealth University and the Robert Wood Johnson Foundation. The map — which shows life expectancy by ZIP code across the Atlanta region — demonstrates short distances between large gaps in health.
Where we live affects our health and well-being in multiple ways. For example, education and income are directly linked to health. Communities with weaker tax bases cannot support high-quality schools. Jobs are often scarce in neighborhoods with struggling economies. Neighborhoods with unreliable or expensive transit options can isolate residents from good jobs, health and child care, and social services. And in many ZIP codes, stores and restaurants selling unhealthy food outnumber markets with fresh produce or restaurants with affordable, nutritious food.
Many times, where you live will determine whether your children have access to quality education and safe places to play, or whether they attend school where 40 percent of children do not read at grade level and teachers spend more time dealing with the impact of exposure to violence than teaching.
Regardless of what we map in the Atlanta region — poverty rates, unemployment, educational attainment, HIV rates or crime — disparities show up between the same neighborhoods.
In 2011, Atlanta leaders came together to say there must be a better way forward. We realize the problems are complex; the only chance we have in closing the gaps is if we work together.
Through this common mission, the Atlanta Regional Collaborative for Health Improvement, ARCHI, was formed. It’s a partnership of hospitals, public health officials, local governments, regional planners, businesses, academics, non-profits and philanthropic groups. Led by the Atlanta Regional Commission, United Way and Georgia Health Policy Center, ARCHI engages partners and community members to increase opportunities for healthy behaviors and pathways to family self-sufficiency, and to support innovative ways to finance and deliver health care.
ARCHI brings together partners who have a stake in improving our neighborhoods — those planning parks and sidewalks, running local schools and hospitals, creating jobs and developing affordable housing. We are starting to see meaningful changes that could help change the region’s health gaps.
We’re on the ground in the Tri-Cities area of College Park, East Point and Hapeville, where new data show a life expectancy of 71 years. We’re attacking factors that contribute to poor health on multiple fronts.Grady Healthcare System is modifying its hours and services to accommodate residents who visit its neighborhood clinic. Community development and health partners are working to improve access to safe, affordable housing in East Point. The United Way of Metropolitan Atlanta is providing funds to move the needle in education, income, health and housing stabilization.
Piedmont Healthcare is implementing non-clinical interventions, such as support for community gardens, to promote health. And Morehouse School of Medicine has a neighborhood project that targets 40 to 75 year olds with risk factors for chronic disease.
Because the health of neighborhoods is shaped by a web of factors, everyone has a role to play, from residents to policymakers. At ARCHI, we believe these changes and other coordinated efforts will add up to improvements over time. They will affect the fabric of our communities and create an Atlanta where everyone, no matter who they are or where they live, can have a healthy life.
Karen J. Minyard is director of the Georgia Health Policy Center at Georgia State’s Andrew Young School of Policy Studies. Mary Wilson is a community builder/activist.
Biotech summit set for Atlanta
By Paul Root Wolpe
Most people don’t think much about biotechnology, mainly because they don’t see its connection to their daily lives. Biotechnology is becoming an increasingly important part of our lives, sometimes in surprising ways.
While we may not be surprised at obvious uses of biotechnology – in drug development, reproductive technologies and medical diagnostics – people are less aware of its uses in manufacturing and in the development of things like household products.
Cell-based biotechnologies, such as stem-cell research and synthetic biology, may unlock the secrets of cell development, perhaps allowing us to repair organs and regrow missing limbs, or to control and eventually cure diseases like Parkinson’s, multiple sclerosis and cancer.Other genetic technologies are being used to create new kinds of hybrid animals and plants, move genes between species, design animals with new kinds of traits, and engineer bacteria for medical and industrial uses.
Stem-cell research, synthetic biology and other cellular genetic manipulations are fraught with ethical and moral dilemmas. If not carefully controlled, altered organisms could adversely effect the environment, develop into pathogens and toxins or be used as biological weapons.
Some worry about the extent to which it is wise to manipulate the basic building blocks of life before we fully understand the implications. Advances in biotechnology are expensive. Questions arise how to distribute them justly and fairly.
The current regulatory environment for cellular biotech is confused how to address these ethical challenges. Laws differ from state to state and nation to nation. The confusion is bad for business, academic research and the public. A scientist doing cellular research in California might not be legally able to do that same research in Georgia.
Given the potential of such research, businesses and academics need a more stable, consistent environment to pursue research and development.
Questions about manipulation of the human genome — once relegated to college philosophy courses — now need input from leaders in business, science, religion and government. The biotech field needs to develop a consensus of its aspirational goals to contribute to human flourishing, and on reasonable ethical and policy guidelines.
With these challenges in mind, the Emory University Center for Ethics, with 14 Georgia-based academic partners, has organized a global summit to discuss these topics and arrive at an international consensus on human cellular biotechnology.
Next Monday through Wednesday, Atlanta will host Biotechnology and the Ethical Imagination: A Global Summit (BEINGS). This international gathering of world leaders on highly debated issues of stem-cell research, synthetic biology and other human cellular biotechnologies will work to establish a vision and consensus on ethical guidelines and policy standards for modern cellular biotechnologies. Hometown partners like Coca-Cola and the Marcus Foundation have stepped up to fund this inaugural event.
Our hope is BEINGS 2015 will be a milestone in reaching consensus on international goals and guidelines in biotechnology. If successful, we will have new standards that can help shape global biotechnological advancement for years.
Paul Root Wolpe is executive director of Emory University’s Center for Ethics.
