(NNPA) - For Marvin Jackson, getting advanced treatment for prostate cancer was a matter of life and death. Jackson (not his real name in order to protect medical privacy) was just 52 years old when the sore shoulder he had been nursing for months turned out to be prostate cancer that had metastasized to his bones.
“I really wasn’t having any symptoms except for my shoulder which kept getting more and more sore,” he said, describing the pain that eventually convinced him to visit a doctor. “The doctor and I thought it was a golf injury or at worst arthritis. He was just as surprised as I was.”
Like many men his age, Jackson had not been to a doctor in years, still, at 52 he was considered young for such an advanced stage of the disease. He later learned that African-American men tend to get prostate cancer at higher rates than other races, and the cancer is often more aggressive. For this reason, the American Cancer Society recommends African American men age 45 or above to have a prostate cancer-screening test yearly. Jackson had thought he was too young to worry about such screening.
After delivering the wrenching diagnosis of Stage 4 cancer, the doctor told Jackson to seek treatment from a medical facility beyond his southern California suburb.
“He told me not to even consider local treatment,” he recalls. “He told me “you need to go to a university or somewhere where advanced treatment is being offered.” He even mentioned Atlanta or Texas.”
As a father of two and the breadwinner for his family Jackson knew traveling out-of-state would be a problem. The doctor ended up referring him to the University of Southern California (USC) Norris Cancer Institute in Los Angeles, some 50 miles from his home.
It was at the Cancer Institute that Jackson first learned of clinical trials that he might be eligible for. The first trial for which he was recommended did not work out because it was too painful for him to lay on the machine for a required scan. However, after radiation shrunk the shoulder tumor, he felt much better and was accepted into another trial for a drug designed to prevent bone metastases in prostate and breast cancer patients.
Dr. Fadia Attia a Corona, California-based General Practitioner says patients are more receptive to advanced treatment options and cancer clinical trials when they are feeling better.
“Many times people are very sick when they are first diagnosed with cancer and they think ‘this is it.’ However, this is not true!” says Attia. “Treatments have come a long way. I saw a patient recently who had a bad diagnosis ten years ago and couldn’t see the promise of advanced treatment at first. Now she understands the treatment saved her life!”
Attia says, like most local practitioners, she is not aware of what trials are available and usually sends patients with late stage cancer to an oncologist or recommends UCLA Med School, USC Norris, or the City of Hope Hospital. She says she makes a point of telling patients with a bad diagnosis, “It’s not the end of treatment…it’s just the beginning!”
Participation in a clinical trial is often presented as a ‘last hope’ for patients with advanced disease. However, Dr. Claudia Baquet, Associate Dean and Principal Investigator at the University of Maryland Medical School stresses that there is a difference between clinical research and clinical treatment or care. “Clinical Care is to treat an individual patient,” she says. “A Clinical Research Study, or trial, is to gain knowledge that can be generalized to groups of people.”
Dr. Baquet, who is one of the leading experts in the area of African-American participation in Clinical Research, sees a need for “cultural diversity in the bio-ethics field.” Even more so, she stresses there needs to be more African-American participation in clinical trials to help fight diseases like prostate and breast cancer which are often more aggressive and lethal among blacks.
When Jackson was presented with a clinical trial option he accepted because the risks seemed low and the benefits positive. He says, “On TV you always see cancer patients turning to some experimental drug for their last hope, and usually the drug doesn’t save them. However, with a clinical trial you have to make a decision to try to help save multiple lives. Maybe if you’re lucky it will help you too.”
Participation in the trial requires Jackson to make the 100-mile round-trip trek to the Cancer Institute for monthly injections of the drug that is being tested. This is in addition to regular visits to various doctors at the center. For the trial, he must also fill out long questionnaires, undergo scans and blood tests, and be interviewed each time he visits.
He admits that participation in the trial could be hard for most people. “It’s normally an all day process at least once a month,” he says, adding, “It’s easy for me because I’m self-employed and I work from home. I have the advantage of not having to tell a boss or co-workers I’m receiving cancer treatment. Most employees would have to let their boss know why they need the time off and with the bad economy people don’t want to seem expendable. Then there is the transportation issue. Not everyone can easily travel long distances on a regular basis.”
Dr. Baquet says economic and travel issues are not the only reasons African-Americans participate in clinical trials in low numbers. Some suffer from too many underlying diseases—such as hypertension and diabetes—that make them ineligible for research.
Others distrust the medical establishment and cite past racial abuses, particularly the Tuskegee experiments from the 1940’s through the 1960’s, where unsuspecting Black men were passed over for syphilis treatments against their knowledge.
Still, researchers like Dr. Baquet agree there is a growing need for African-American participation to study new drugs and treatments. There is now an Informed Consent process where U.S. law that requires patients be given all necessary details prior to participation.
Jackson feels comfortable that he has received all pertinent data on the trial. He knows his study does not involve a ‘placebo’ or inactive drug. He says he is not sure how much the drug has helped prolong his life. His initial diagnosis was 18 months, but that was three years ago. He is also happy that he is pain free and has not needed chemotherapy.
When asked why he agreed to participate in a clinical trial Jackson summed up his feelings by saying, “to be honest, my initial thought about being in the trial was that I probably wouldn’t make it, but this drug might help somebody else. However, I’m still here and feeling great and maybe this drug has helped me.”
Copyright 2010 NNPA
“I really wasn’t having any symptoms except for my shoulder which kept getting more and more sore,” he said, describing the pain that eventually convinced him to visit a doctor. “The doctor and I thought it was a golf injury or at worst arthritis. He was just as surprised as I was.”
Like many men his age, Jackson had not been to a doctor in years, still, at 52 he was considered young for such an advanced stage of the disease. He later learned that African-American men tend to get prostate cancer at higher rates than other races, and the cancer is often more aggressive. For this reason, the American Cancer Society recommends African American men age 45 or above to have a prostate cancer-screening test yearly. Jackson had thought he was too young to worry about such screening.
After delivering the wrenching diagnosis of Stage 4 cancer, the doctor told Jackson to seek treatment from a medical facility beyond his southern California suburb.
“He told me not to even consider local treatment,” he recalls. “He told me “you need to go to a university or somewhere where advanced treatment is being offered.” He even mentioned Atlanta or Texas.”
As a father of two and the breadwinner for his family Jackson knew traveling out-of-state would be a problem. The doctor ended up referring him to the University of Southern California (USC) Norris Cancer Institute in Los Angeles, some 50 miles from his home.
It was at the Cancer Institute that Jackson first learned of clinical trials that he might be eligible for. The first trial for which he was recommended did not work out because it was too painful for him to lay on the machine for a required scan. However, after radiation shrunk the shoulder tumor, he felt much better and was accepted into another trial for a drug designed to prevent bone metastases in prostate and breast cancer patients.
Dr. Fadia Attia a Corona, California-based General Practitioner says patients are more receptive to advanced treatment options and cancer clinical trials when they are feeling better.
“Many times people are very sick when they are first diagnosed with cancer and they think ‘this is it.’ However, this is not true!” says Attia. “Treatments have come a long way. I saw a patient recently who had a bad diagnosis ten years ago and couldn’t see the promise of advanced treatment at first. Now she understands the treatment saved her life!”
Attia says, like most local practitioners, she is not aware of what trials are available and usually sends patients with late stage cancer to an oncologist or recommends UCLA Med School, USC Norris, or the City of Hope Hospital. She says she makes a point of telling patients with a bad diagnosis, “It’s not the end of treatment…it’s just the beginning!”
Participation in a clinical trial is often presented as a ‘last hope’ for patients with advanced disease. However, Dr. Claudia Baquet, Associate Dean and Principal Investigator at the University of Maryland Medical School stresses that there is a difference between clinical research and clinical treatment or care. “Clinical Care is to treat an individual patient,” she says. “A Clinical Research Study, or trial, is to gain knowledge that can be generalized to groups of people.”
Dr. Baquet, who is one of the leading experts in the area of African-American participation in Clinical Research, sees a need for “cultural diversity in the bio-ethics field.” Even more so, she stresses there needs to be more African-American participation in clinical trials to help fight diseases like prostate and breast cancer which are often more aggressive and lethal among blacks.
When Jackson was presented with a clinical trial option he accepted because the risks seemed low and the benefits positive. He says, “On TV you always see cancer patients turning to some experimental drug for their last hope, and usually the drug doesn’t save them. However, with a clinical trial you have to make a decision to try to help save multiple lives. Maybe if you’re lucky it will help you too.”
Participation in the trial requires Jackson to make the 100-mile round-trip trek to the Cancer Institute for monthly injections of the drug that is being tested. This is in addition to regular visits to various doctors at the center. For the trial, he must also fill out long questionnaires, undergo scans and blood tests, and be interviewed each time he visits.
He admits that participation in the trial could be hard for most people. “It’s normally an all day process at least once a month,” he says, adding, “It’s easy for me because I’m self-employed and I work from home. I have the advantage of not having to tell a boss or co-workers I’m receiving cancer treatment. Most employees would have to let their boss know why they need the time off and with the bad economy people don’t want to seem expendable. Then there is the transportation issue. Not everyone can easily travel long distances on a regular basis.”
Dr. Baquet says economic and travel issues are not the only reasons African-Americans participate in clinical trials in low numbers. Some suffer from too many underlying diseases—such as hypertension and diabetes—that make them ineligible for research.
Others distrust the medical establishment and cite past racial abuses, particularly the Tuskegee experiments from the 1940’s through the 1960’s, where unsuspecting Black men were passed over for syphilis treatments against their knowledge.
Still, researchers like Dr. Baquet agree there is a growing need for African-American participation to study new drugs and treatments. There is now an Informed Consent process where U.S. law that requires patients be given all necessary details prior to participation.
Jackson feels comfortable that he has received all pertinent data on the trial. He knows his study does not involve a ‘placebo’ or inactive drug. He says he is not sure how much the drug has helped prolong his life. His initial diagnosis was 18 months, but that was three years ago. He is also happy that he is pain free and has not needed chemotherapy.
When asked why he agreed to participate in a clinical trial Jackson summed up his feelings by saying, “to be honest, my initial thought about being in the trial was that I probably wouldn’t make it, but this drug might help somebody else. However, I’m still here and feeling great and maybe this drug has helped me.”
Copyright 2010 NNPA
