Trenton Health Team Help Sickle Cell Patients Find Better Care
TRENTON – Adults suffering from sickle cell anemia and the excruciatingly painful episodes that come with it often found themselves with few treatment options in the Trenton area.
So when they weren’t traveling to hospitals in New Brunswick and Philadelphia for care, patients often turned to local emergency rooms to deal with the pain crises and other complications brought on by the genetic blood disorder – so much so that local health providers found that the No. 1 diagnosis for ER patients turning up at the city’s two hospitals was sickle cell disease. The disease slows blood flow and starves the body of oxygen.
In 2010, one study found the 167 sickle cell patients visited Trenton emergency rooms 857 times. Eighteen of those patients were considered “high utilizers,” logging 624 ER visits in one year.
“We had a couple of our sickle cell patients in Trenton die, die really unfortunate, miserable deaths,” said Dr. Robert Remstein, vice president for Medical Affairs at Capital Health and president of the Trenton Health Team. “The clinical leaders here said this is not right, there are things we can do for these people to reduce the risk of dying from complications of sickle cell. We’d been doing a bad job in Trenton and we had to do something about it.”
For the past two years or so, members of the Trenton Health Team, a collaboration between the city and local hospitals and clinics, have worked to steer more adult sickle cell patients to the Capital Health Family Health Center on Bellevue Avenue. There, a group of primary care residents associated with the Robert Wood Johnson Medical School and its Family Medicine Residency Program have received special training for patients with sickle cell, giving them access to primary care doctors and helping to cut down on costly emergency room admissions.
“Our goal was to basically see if we can help them, not only from the perspective of keeping them out of the ER but are there things we can do to make their lives better and prevent them from utilizing the ER so much?” said Dr. Sameer Panjwani, an instructor of family medicine and community health at RWJ Medical School and a doctor at Capital Health’s clinic.
A small sample study of five local sickle cell patients shows it’s a promising approach, Panjwani and Remstein said.
The Trenton Health Team tracked those five patients for a 15-month period in 2011 and 2012 after they were directed to doctors at the Family Health Center and found ER admissions among the group had dropped by 33 percent, from 216 visits per year in 2011 to 145 in 2012.
Sickle cell disease, also known as sickle cell anemia, affects red blood cells, transforming them from their normal round shape to crescent-shaped sickles that slow blood flow, resulting in painful episodes called pain crisis, organ failure and other complications such as strokes.
The U.S. Centers for Disease Control and Prevention estimate up to 100,000 Americans – including one in 12 African-Americans – have sickle cell disease, which can shorten life expectancy. Medical studies have found patients with sickle cell typically receive less care than patients with other genetic diseases, such as cystic fibrosis, and only one drug, hydroxyurea, exists to treat the disease.
Panjwani said the patients he sees – he currently treats six at the clinic – often suffer from accompanying conditions including asthma, high blood pressure and depression.
One patient, Hamilton resident David Elliott, 43, called himself a “jack-of-all-trades” but said he’s had to miss work and has been fired from two jobs due to the pain he suffers during crises, when a lack of oxygen in the blood can cause quick spurts of agonizing pain.
“I’ve dealt with pain all my life but no one can get used to pain,” he said in a Trenton Health Team release. “I’ve endured a lot.”
Andrew Bobbitt is a city resident who heads the nonprofit Never Give Up organization, which works to increase local awareness of sickle cell. Bobbitt’s son Elijah was diagnosed with the disease at age 3 and he’s pushed Capital Health and St. Francis Medical Center to bring on more sickle cell specialists and create a floor or facility dedicated to sickle cell care. The recent progress is encouraging, but it doesn’t go far enough, he said.
“I know they have the clinic on Bellevue but the clinic closes at 6 p.m.,” he said. “What happens when people go through crisis at that time period? They always have to go over to Philadelphia or New Brunswick. It’s a good cause they’re trying to do, but they can do a lot more.”
About the Trenton Health Team
Trenton Health Team (THT) is an alliance of the city’s major providers of healthcare services including Capital Health, St. Francis Medical Center, Henry J. Austin Health Center and the city’s Health Department. In collaboration with residents and the city’s active social services network, THT is developing an integrated healthcare delivery system to transform the city’s fragmented primary care system and restore health to the city. THT aims to make Trenton the healthiest city in the state. Support for the Trenton Health Team was provided in part by a grant from The Nicholson Foundation. For more information, visit www.trentonhealthteam.org.