Medical breakthroughs in curing sickle-cell anemia and treating HIV/AIDS and prostate cancer may dramatically improve life for the millions of people struggling with these diseases, but there are significant barriers that may keep African Americans from receiving this new, high-quality care. This article is the first in a series about how health care costs, policies and even the structure of the health care system may increase, rather than decrease, the health disparities we face. To read other articles in the series, click here.
The first thing you notice about Andrew Chase is his mischievous grin and laughing eyes — hallmarks of a typical, happy 15-year-old. "I like playing basketball, helping my mom cook, and I like to write," he says. It's only when you speak to Andrew's mom, Syreeta Chase, that you realize he is anything but average.
"He doesn't really talk about it," Chase says, her voice filled with both admiration and deep affection for her eldest child, "but Andrew was diagnosed with sickle-cell anemia when he was 3 months old. At age 3 he had his first major stroke. For a time he was unable to walk. At age 5 he developed moyamoya [a rare brain disease caused by sickle-cell complications], and since about age 2, he's been in and out of the hospital several times a year for transfusions, treatments for iron overload, and he has repeated viruses and fevers."
Having sickle cell means that Andrew is also missing out on just being a teen. "I can't do certain activities. I have chronic headaches, and I can't just run around like other kids," he says. That means even though Andrew — who is small for his age because of the disease — triumphed over his illness and made the county basketball team, he had to stop playing to protect his health.
Unwilling to spend his youth on the sidelines, Andrew, at age 10, shocked his mom by announcing that he wanted to have a stem cell transplant.
"I said, 'Absolutely not,' " says Chase, who had Andrew as a single 17-year-old and has fought hard to get him the best care. "I was just too afraid."
Her fear was understandable. Stem cell transplants are the only cure for sickle cell, but there are serious risks, such as transplant-related illnesses. And in about 5 percent of cases, patients may die. "But," Chase says, "I finally realized that Andrew was tired, so I said yes."
In 2009 Andrew and his family began his long journey toward a cure. "It takes careful planning, a lot of support, qualifying for a clinical trial and grueling chemotherapy to prepare Andrew's immune system," explains Chase, who works in records at a law firm near her Waldorf, Md., home.
By November 2011, Andrew was scheduled to become one of only nine patients to undergo a new type of stem cell transplant at Johns Hopkins Children's Center in Baltimore. Nearly 90 percent of sickle-cell patients can find a stem cell donor match with the new method — a great benefit to African Americans — because only a 50 percent donor-cell match is required. Healthy parents, siblings, even half-siblings, can donate stem cells. His mom became Andrew's donor.
From the Lab to Life
By participating in the Hopkins trial, Andrew may be helping thousands with severe sickle-cell disease. "Andrew and his mom are not average patients," says Dr. Allen Chen, director of Pediatric Bone Marrow Transplantation at Hopkins, and Andrew's physician. "They are pioneers. To help us perfect these treatments and make them widely available, pioneers must come forward to participate in clinical trials."
Chen's point is part of the much larger discussion about how to ensure that African Americans — the population with the highest rate of health care disparities — gain access to the latest generation of lifesaving medical treatments.
"It's really hard to link to new discoveries because of the cost," says Ira Bragg, director of the American Sickle Cell Anemia Association in Ohio. "Many people with sickle cell are ill so often, they have problems with employment, and they receive much of their care in emergency rooms."
Even though breakthroughs such as stem cell treatments and personalized medicine (treatments drawn from a patient's own genes or DNA) are funded, in large part, with federal dollars, current reports from the National Institutes of Health reveal funding cuts in many sickle-cell-related initiatives since 2007.
Research investigating pain management and a variety of therapies was funded at lower levels in 2010 than in previous years. Cuts in federal Maternal and Child Health grants in 2009-2010 also translated into cuts to many basic sickle-cell-care programs. Yet these types of programs often help people access advanced treatments.
"We have the potential to create the best treatments here in the U.S. But those systems are disconnected from the people the treatments target," says Dr. Keith Norris, principal investigator for the NIH's translational-research program for minority institutions. "New therapies are often too expensive to have any impact on disparities."
Barriers to Care
Access to the not-exactly-new stem cell cure for the roughly 100,000 Americans (and 1 out of every 500 African-American newborns) with sickle cell is a case in point. "The first successful cure of sickle cell with a stem cell transplant actually occurred in the 1980s. The procedure has improved dramatically since that time," says Dr. Mitchell Horwitz, at Duke University's Adult Stem Cell Transplant Program, but access to the treatment has not.
While transplants, which cost $200,000 to $300,000, are slightly more available to children, Horwitz says, "I do not see many sickle-cell patients. To have access, they must be referred by a physician. If they don't have insurance, we advise them not to make the trip. This is a difficult time to get expensive treatments." He adds, "There is a great need for advocacy."
This is especially true when 17 percent of blacks under 65 — the age group most likely to have sickle cell — are on Medicaid, says Cara James, director of the Disparities Policy Project at the Kaiser Family Foundation. In order for Medicaid to cover a transplant, the patient must have had a stroke or else prove stroke risk. "In addition, 34 million blacks are uninsured, and not all insurance pays for transplants," she says.
With 25.8 percent of blacks living in poverty and 16.7 percent unemployed, "income-related inequities create other problems," James continues, including an inability to travel to top medical centers and the challenges involved in having to take long sick leaves. "So there's definitely a possibility that these treatments could exacerbate disparities," she says.
Reality Check: More Work to Be Done
For people living with sickle cell, new treatments are greatly appreciated, but Tosin Ola, a nurse and the founder of the activist organization Sickle Cell Warriors, understands the difficulty of access.
"Being able to have a sickle-cell cure seems very far-fetched to me. I've considered going to Hopkins, but financing the procedure keeps me away," says Ola, who lives in Portland, Ore., and pays $650 per month for medical insurance while working two jobs. "There's no clear way to a transplant for most sickle-cell patients," says Ola, who is also part of a passionate Facebook sickle-cell community of thousands.
"There certainly are barriers to transplants," says Dr. Lanetta Jordan, chief medical officer at the Sickle Cell Disease Association of America Inc. Jordan believes that advocacy is key. "We are going to have to fight to bring these treatments to our communities."
Ola, Jordan and other advocates suggest two paths: lobbying legislators for better insurance coverage and working with community liaisons at hospitals to demand advanced treatments.
"We want medical innovations like this that will add value and extend life," says Ruth Faden, director of Hopkins' Berman Institute of Bioethics. "But we must ask, how will these innovations impact disparities? There's a moral imperative to address these questions."
A Brighter Future
As for Andrew, he is on his way to getting his wish of a normal childhood. Surrounded by his siblings, cousins and grandparents, Andrew received his transplant on Nov. 16. Family members report that he was excited and in great spirits. It will now take a few weeks to learn if the procedure was completely successful — leaving Andrew free of sickle cell and able to get back out on the court and play some ball.
For more information about sickle-cell research and other resources, click here.
Sheree Crute is a 2011 University of Southern California/Annenberg National Health Journalism fellow and journalist in Brooklyn, N.Y. This article is first in a series, funded by USC, about how the latest medical advances will affect health care disparities among African Americans.