Illinois state Rep. La Shawn Ford beats prostate cancer, urges early screening and greater understanding of health inequities

When Illinois state Rep. La Shawn Ford requested a screening for prostate cancer, his primary care physician told him it was unnecessary. He had no symptoms. He was only 48, and the average age of onset is 66. He was healthy — he never smoked, ate well, exercised regularly, went to the doctor, got adequate sleep. There was no apparent cause for concern.

Still, Ford knew that prostate cancer disproportionately affects Black men, so he didn’t let up. The second provider he saw gave him a prostate specific antigen (PSA) test, which came back alarmingly high. That doctor sent the results to Ford’s PCP, who referred Ford to the oncology department at Northwestern Memorial Hospital. They performed blood work a few times and each time, PSA levels came back higher. An MRI was ordered, which showed complications with the prostate, leading to a biopsy and the discovery that Ford indeed had prostate cancer.

Ford’s cancer was swiftly operated on, leading to a full recovery. Prostate cancer is a generally slow-growing disease, according to Dr. Edward Schaeffer, chief of urology at Northwestern , who operated on Ford. But in the legislator’s case it was already in an aggressive stage. Had Ford not been so steadfast in advocating for himself, he might have had a very different outcome.

“If I had not advocated for myself and said, ‘Look, I need to get a PSA,’ even against my doctor’s recommendation — my cancer covered a lot of my prostate, it was aggressive. And it was soon to be leaking out of the prostate, which would have metastasized (spread) ... to the bones, the organs. … People would say, ‘Wait a minute — La Shawn was healthy. How did he die of cancer? How does he have terminal cancer at this point in his life?’”

“The truth is, it’s because I didn’t get an exam.”

The prostate specific antigen test is considered the “gold standard” for screening for prostate cancer. It’s recommended at age 40 for African American men and men with a family history of cancer.

African American men are about 1.8 times more likely than white men to develop prostate cancer in their lives, according to Schaeffer, and are about 2.5 times more likely to die from it. However, the equation is not that simple, he warns.

“If you never make it to a doctor because of (access problems) ... you could argue that if there’s really such poor access to health care, there could be less prostate diagnosis but maybe more fatality,” Schaeffer said. “So it’s a complicated equation about what’s going on in the prostate that no one’s really figured out.

“A PSA of 100 may mean that you have prostate cancer that’s spread. A PSA of 4 may (also) mean you have prostate cancer, but it may not be a lethal kind. If you’re 45 and your PSA is 4, thats 4 ½ times normal. If you’re 65 and your PSA is 4 that could be considered in the normal range.”

Prostate cancer is the most common type of cancer in men and its risk increases with age. Symptoms may include difficulty with urination or blood in the urine, erectile dysfunction and more, but in its early stages it is often symptomless.

Ford speaks out about his journey in hopes that it propels men to advocate for their own health. Asking for a PSA screening, a colonoscopy, cholesterol tests and more are all examples of preventative measures he thinks people should take when visiting their physicians for check-ups or other concerns. Not only can these preventative measures be life-saving, as Ford’s case demonstrates, but they are much less costly and invasive than surgeries and ongoing treatments and medications.

As a state representative, Ford has previously advocated for health-related legislation. He recounted a bill he worked on that called for the inclusion of HIV screening questions in routine checkups, so as to minimize the stigma of asking for HIV health care and avoiding the discomfort caused by doctors’ sometimes probing questions — such as are you gay, have you had sex with a male, or are you a drug addict — that can deter men from disclosing issues or seeking care.

Ford also wants his story to encourage more cultural competence training within the medical field. Teaching physicians and other health professionals critical race theory could go a long way in mitigating some racial health disparities, Ford says. Northwestern Medicine is currently conducting research to explore these disparities.

Schaeffer says the reasons for these inequities are not entirely known.

Ford thinks a reason is because “there is not an understanding of Black culture and Black health the way it should be. It seems to me that the responsibility for life expectancy has been put on minorities and not on health care.”

Ford does not fault his primary care physician. As soon as he received the results of the PSA test, he recognized his misstep and advocated for Ford, connecting him to a urologist.

But higher PSA levels do not always equal prostate cancer, and having these tests can lead to biopsies that can cause harm to male patients.

“You don’t need to go to a urologist to get a test for prostate (cancer),” Ford said. “That’s why it’s so important that you have access to a medical home or primary care doctor. So that you could talk about prostate health, so you could talk about colorectal cancer as well.

“People think that Black people and minorities live a more unhealthy lifestyle. But the truth is, that’s not always the case when you look at the life expectancies,” Ford said, citing the 11-year life expectancy difference between those in suburban Oak Park and the nearby Austin neighborhood in Chicago.

Along with its ongoing research, Northwestern Medicine is also leading three programs aimed at educating communities about health disparities and reducing the gap in health outcomes.

One, Project HOPE (Health Outreach Promoting Equity), started as a COVID-19 outreach program and is expanding to continue connecting people to health resources surrounding issues like diabetes, routine health screening and other health education.

Another program is Clergy and Clinicians, which partners with religious organizations to deliver important health information.

“We feel like (religious leaders) are authentic voices in many communities that really connect with individuals that trust what they say versus what a doctor or hospital says,” said Posh Charles, vice president of community affairs at Northwestern Medicine, referencing the lack of trust that minority communities often have in the medical system.

The third program, the African American Transplant Access Program, aims to break down barriers in access to transplant care in the African American community.

Northwestern Medicine is also incorporating social determinants of health screenings into primary care— asking questions about factors like food insecurity and housing insecurity to get to the root causes of health problems in order to partner with community organizations and resources to combat those causes.

Schaeffer wants people to know that there exists a wealth of free information on prostate cancer specifics and treatment on the internet through the National Comprehensive Cancer Network. He hopes Ford’s journey inspires others to take charge of their health.

“People take their cars to get oil changes and check-ups more than they take their bodies for check-ups,” Ford said. “It just doesn’t make sense.”

“Life is so fragile. It’s really, really amazing how early detection can really, really prevent a lot of pain and anguish for yourself and family,” he said. “The moral of the story is get a doctor that understands and respects you and make sure that you advocate for yourself.”

mmokh@chicagotribune.com

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