Editor’s Note: Marjorie A. Speers, Ph.D., is the executive director of Clinical Research Pathways, a nonprofit organization that works to improve health and well-being for all by creating pathways to new medicines and treatments.
Cancer is color blind. It affects adolescents and young adults (AYA) of all races and ethnic groups. Yet young patients in some groups tend to do worse than others.
The obvious question is “why?” And the answer is that we simply don’t know.
What we do know is that African-American adolescents and young adults are less likely to get cancer than whites of the same age—but more likely to die of the disease.
We also know that this difference, or disparity, is unfair, and there is no better time to call attention to it than during Black History Month.
What the data tell us
At first glance, the news looks good for young African-Americans. For most childhood cancers, the rate of new cases, or incidence, is lower among blacks than whites. The reasons for this are unclear. Incidence rates may be related to genetics or biology, but without additional research we can’t be sure.
Dig a little deeper, and things change.
Five-year survival rates for the most common childhood cancers are considerably worse for blacks than whites. Only 73 percent of black children are likely to live five years after being diagnosed with cancer, compared with 81 percent of white children. Depending on the type of cancer, black children and young adults are 38 to 95 percent more likely to die than white patients of the same age.
Researchers at the University of Minnesota wondered if social factors—such as income, health insurance coverage, and education—might play a role. The answer turned out to be “yes.” In fact, the researchers found that these social factors reduced survival rates for black children and young adults by:
The social factors all have something in common. One way or another, they make it harder for black patients to get the care and information that could help them live longer. In other words, the issue is access—or, more accurately, the lack of it.
The link between access and survival
Black children and young adults, especially those who live in rural areas, are less likely to have access to healthcare services, to high-quality healthcare and, especially, to innovative treatments and clinical trials.
Some families don’t have adequate health insurance—or any insurance at all—to help pay for incredibly expensive cancer treatments. Even those with insurance may not be able to afford the other costs that come with cancer care. Examples include co-payments for covered treatments; gas or taxi or bus fare to get patients to their appointments; day care or babysitting expenses for younger brothers and sisters; and the cost of taking time off from work.
Many families that struggle with expenses haven’t had the same educational opportunities as those with higher incomes. This lack of opportunity compounds the problem because lower education levels are linked to lower survival rates. Why? Once again, researchers are not sure.
Certainly, it’s not because those with lower levels of education don’t care about their disease or have less desire to live. Some researchers suggest looking at the doctor-patient relationship. Is it possible that doctors and nurses do not fully explain the risks, side effects, and benefits of all treatment options to patients of lower education levels? Do healthcare providers take the time to ask all patients—regardless of education level—about what they wish to do to fight their disease?
What you can do right now
Improving access will not be easy. It requires major changes to policies, practices, and ways of thinking. But it is the best way to address racial disparities in cancer care and treatment of other potentially life-threatening diseases. Organizations like Clinical Research Pathways, which seeks to increase access to new medicines, are working on long-term solutions.
But what can be done now for today’s cancer patients and survivors?
One of the most important things you can do is to reach out—to your doctors and other healthcare providers, support groups, and other resources. That’s not easy, especially when every aspect of your life is being taken over by this dreadful disease. Keep reminding yourself that, by asking questions, you will get access to better treatments that could increase your chance of a better health outcome. If you can’t do the outreach yourself, ask a friend or family member to help.
Every visit with your doctor is an opportunity to get answers to your questions. If your doctor is too busy, ask a nurse or another member of your healthcare team. Most hospitals and many medical practices have people on staff whose job is to help you and your family get through your cancer experience. Don’t be shy about taking advantage of these services.
Access to care often depends, in part, on where you live. Cancer treatment is complicated so, if possible, it’s better to get care at a hospital or medical center that specializes in cancer or treating children. Forty-two states have a National Cancer Institute (NCI)-funded cancer center that provides the newest, most innovative treatments for cancer patients, including children and young adults. In addition, there are more than 220 children’s hospitals in the U.S. For adolescents and young adults, one of these hospitals might be the best option.
Medical care alone is not enough. Ask your doctor or another member of your healthcare team to help you find a support group or put you in touch with other cancer patients. There also are lots of resources that young cancer patients can tap online. The NCI, American Cancer Society, Life with Cancer, Cancer.Net, and CancerCare all have information about cancers that affect adolescents and young adults (AYA). A Google search of words like “children and cancer,” “cancer resources” and “AYA cancers” will turn up additional helpful websites. E-newsletters, like The Weekly Herd from Elephants and Tea, can be a wonderful source of support.
The critical role of clinical trials—and Clinical Research Pathways
Clinical trials for childhood cancers play an important role in improving treatments. We’ve had major successes in treating childhood cancers, in part because so many young patients participate in trials. As many as 50 percent of children and young adults with cancer will enroll in a clinical trial. Most of these patients will be white.
Less than 5 percent of black patients of all ages participate in clinical trials. As a result, when new drugs are introduced, no one knows how well they work with African-Americans—or what side effects they will have—because blacks weren’t included in the testing process.
That’s where Clinical Research Pathways comes in. We have partnered with Morehouse School of Medicine (MSM) in Atlanta, Georgia, (a historically black medical school) to increase the number of minority patients who sign up for clinical trials. If we succeed in Atlanta, we will expand our project so that, eventually, we will increase minority participation in clinical trials across the U.S.
Our project draws on what we’ve learned from research on how to make patients more comfortable with clinical trials. For example, we know that talking with a trusted physician—about the risks and benefits of a trial, how long the trial will take, and whether there will be extra tests and costs involved—makes a big difference in what patients and their families decide. We also know that many African-American patients are more likely to choose and trust African-American physicians, and that we need more minority physicians to conduct clinical trials.
MSM has one of the largest networks of minority physicians and an excellent reputation as a trusted healthcare provider. It makes sense for Clinical Research Pathways and MSM to partner to recruit minority physicians and train them to run clinical trials. These physicians will then be in the best position to talk with their minority patients about clinical trials and options for care.
We believe this approach will increase minority participation in clinical trials. It will help make sure that more minority patients are aware of clinical trials, have discussed their options and, with help from a trusted physician, have decided whether a trial is the right choice. Those who do take part in a trial will have the opportunity to try new medicines and realize the benefits they might provide. At the same time, minority patients will help us learn how well new medicines work for African-Americans and whether they are at risk for different side effects. That information will help lead to better medicines, higher-quality healthcare and, ideally, improved health and well-being for minority patients.
Marjorie A. Speers, Ph.D.