Racial Disparity

06.27.22

By Son of Inequity

Part 3

This is Part 3 in a series of blogs about my diagnosis and recovering from colorectal cancer. To start at the beginning, click here for Part I or Part II.

All told, the biopsies, tests, my surgery and follow-ups appointments cost nearly $40,000!

And I was lucking.

Treating stage 3 or 4 CRC—which is what most African American CRC patients must face—easily exceeds $100,000.

According to the Centers of Disease Control, CRC surgery and treatment costs the U.S. $14.1 billion in 2014. The CDC estimates that it is now over $20 billion.  More than 10 percent of the cancer treatment costs in the U.S. is spent on CRC. In fact, CRC is the second most costly cancer in the U.S.

But that’s just the tip of the iceberg. For the year 2006, it is estimated that the lost productivity cost for people who are diagnosed with CRC was $15.3 billion, or $288,468 per person.

Now, contrast these incomprehensible financial and human costs with the cost of screening:

• Colonoscopy cost about $1,500 every 5 years, for an annual total of $300
• Cologuard costs about $500 every 5 years, for an annual total of $100
• FIT and other fecal blood tests costs between $30 and $90, depending on the brand but must be done annually

But remember from Part I of this blog that Cologuard is more accurate that FIT:

In a 2014 head-to-head comparison of FIT and Cologuard, published in the New England Journal of Medicine, Cologuard detected colorectal cancer accurately 92 percent of the time while FIT was accurate only 73.8 percent of the time. Cologuard was also better at detecting early tumors, or advanced precancerous lesions, than FIT, with a 42% accuracy for Cologuard and 23% accuracy for FIT.

FIT simply misses a huge number of colon cancers—compared to Cologuard and colonoscopy—a disproportionate number of which occur in African Americans. Conversely, Cologuard is more accurate and is designed to find tumors that are specific to African Americans.

I haven’t done the math, but I’m certain that Cologuard not only saves more lives than FIT, it saves more money too.

“The only color that really matters is green.”

This was one of my grandfather’s favorite sayings. When it came to racial hatred or racial solidarity, both could be overcome by money. There’s a lot of truth here, but every rule has some exceptions.

Because genetic testing finds tumors long before there are any symptoms, like in my case, it allows for early intervention when medical care is much cheaper and more likely to succeed. So, you would think payors would go out of their way to test high-risk patient groups with genetic tests. Afterall, it would save them money.

Here’s the exception to my grandfather’s favorite saying. Payors, private ones as well as public ones like Medicare and Medicaid—are actively trying to reduce genetic testing for cancers, particularly breast and colorectal cancers. Both tumors cost the most to treat and disproportionately impact African Americans.

“STFU!”  No, you heard me right.

Despite the fact that genetic testing for CRC in African Americans is readily available and affordable, African Americas are often not even told that this option exists.  A 2018 study titled Low Referral Rate for Genetic Testing in Racially and Ethnically Diverse Patients Despite Universal Colorectal Cancer Screening concluded:

“Overall, 92% of colorectal tumors were analyzed for mismatch repair deficiency without significant differences among races/ethnicities. However, minority patients were significantly less likely to be referred for genetic evaluation (21.2% for NHW patients vs 16.9% for African American patients and 10.9% for Hispanic patients; P = .02). Rates of genetic testing were also lower among minority patients (10.7% for NHW patients vs 6.0% for AA patients and 3.1% for Hispanic patients; P < .01). On multivariate analysis, African American race, older age, and medical center were independently associated with lack of referral for genetic evaluation and genetic testing.”

Just a reminder: African Americans have the highest mortality rate from colorectal cancer than any ethnic group in the United States!

If your head is still stuck in the sand and you want to hold onto the idea that CRC is a strange anomaly in the U.S. healthcare system, guess again. A study published in April of this year in the journal Oncologist reveals that genetic testing for the three most deadly cancers to African Americans are severely underutilized in the diagnosis of African Americans.

“STFU!” Are you beginning to see the pattern?

These researchers looked specifically at breast tumors that result from a genetic mutation called BRCA1/2. These tumors are extremely difficult to treat and are very deadly. But, when diagnosed early, survivability improves dramatically and treatment costs decrease dramatically.

The researchers report that in a population of 28,000 breast cancer patients, 5.65% of African American women carried the BRCA1/2 gene compared to 5.06% for non-Hispanic White women with breast cancer. But Black women were still less likely to be tested for this cancer-causing mutation.:

“However, compared with other races and ethnicities, African-American patients with breast cancer have lower rates of referral for genetic evaluation.”

The authors of the Oncologist paper cite additional research revealing that “41.2% of African-American women who were eligible for BRCA1/2 mutation testing according to National Comprehensive Cancer Network (NCCN) guidelines did not receive it as part of their routine care. Healthcare providers were 16 times less likely to discuss genetic testing with African Americans than with their non-Hispanic White counterparts.”

This research revealed the same deadly trend among Black men with prostate cancer, which is the second most common cause of cancer-related death in African-American men. Prostate cancer occurs much more frequently and at an earlier age in African Americans than in Whites. 1 in 7 African American men and 1 in 9 non-Hispanic White men will be diagnosed with prostate cancer in the U.S. The 5-year mortality for African Americans remains 2.5-fold higher than for White American men with prostate cancer. Despite all of this evidence for early detection with readily available genetic tests, African American men are far less likely to receive genetic testing for prostate cancer compared to White men.

So why does this still happen. There seems to be three broad answers:

1. It’s a long-ignored oversight by a well-intentioned healthcare system.
2. It’s an unfortunate blind spot in a system designed by white Americans for white Americans.
3. It is the callous disregard for the lives of African Americans.

I still don’t know the answer to that question. The doctor who pleaded with me to get a CRC screen is white. And he saved my life. Depending on my mood and the day of the week, I’m likely to blame all three.

But in the next post in this series, I’m going to discuss something that makes me OTT, FTS, burn-it-all-down cynical.

I’m going to reveal that insurance providers—starting with Medicare and Medicaid—are actively trying to reduce access to Cologuard and the genetic tests that identify BRAC1/2 breast cancers: two of the deadliest tumors to African Americans.

Not only are they trying to reduce access, they’ve already successfully reduced access. How do I know?  Because they brag about it on their own website.

06.06.22

By Son of Inequity

Part 2

This is Part 2 in a series of blogs about my diagnosis and recovering from colorectal cancer. To start at the beginning, click here for Part I.

The results of the FIT test I took came back negative, which didn’t put my mind at ease—knowing all too well about my own family history and that FIT isn’t a very robust test for early detection of CRC, particularly in Black people. I spoke to the HR director at my company, which has a self-funded health plan that isn’t particularly good.

Based on my history, I insisted on a Cologuard test or a colonoscopy. The HR director wasn’t very helpful or concerned, but she said she would look into my options.

About two months later, another test was delivered to my house. Guess what/it was another FIT test kit.

Prior to taking this job, I worked at a hospital and kept in touch with many of the ICU and ED staff who I worked closely with, including nurses, docs and EMTs. One of those docs knew that both my parents died young from CRC. All through my late 30s up to and including my 40^th birthday, this doctor never let a week pass without texting or calling me about my CRC screen. He was insistent and I have to admit, kind of annoying.

But I thank God today for his persistence.

A month or so after I tossed the second FIT kit into the trash, I got a package in the mail: it was a Cologuard test. I can’t say I was surprised because this doctor was texting me daily, asking if I had received anything interesting in the mail.

I still don’t know how he managed this, but he did and with no charge to me.

So I carefully followed the instructions and sent the sample back to the lab.

Lo and behold, the result was positive. My doctor friend back in North Carolina recommended a doctor and surgeon where I live now. The genetic test revealed the KRAS mutation that I discussed in Part 1 of this blog, the genetic mutation that is a common genetic biomarker for CRC in African Americans and one of about a dozen mutations the Cologuard test can detect.

The following month—and almost a year after this whole process started—I had surgery to remove a small stage 1-2 colon tumor.

The tumor was very small and localized. There were no signs of metastasis. My liver, lungs and lymph nodes all were clear and unaffected. For more advanced tumors, which have spread throughout the body, the 5-year survival rate is 15 percent.

While my tumor was caught early—very early when compared to most African Americans–the tumor was still too large, and my risk was too great, to remove it with a colonoscopy, so it required surgical resection. The tumor had not penetrated my colon wall, which is good. But my surgeon still wanted to remove a small part of the colon wall surrounding the tumor, as well as remove a nearby lymph node to confirm that it had not metastasized yet.

It had not!

During this process, I never really feared death, probably because I knew that CRC is very survivable if treated early. But I began to fear the thought of having a to use a colostomy bag. The very thought of this led me to hyperventilate. And it made no difference that my doctor constantly reassured me that this would not be necessary.

Both of my parents ultimately had to use colostomy bags because their cancers had so ravaged their colons that they could not defecate normally.

I have many horrible memories from this time so the thought that I too might need this procedure triggered uncontrollable anxiety.

If you met me, you would probably never believe that I had the broken and violent childhood that I had. But, thanks to my grandmother, I overcame it.

I’m very fit and dress well. I pride myself on my appearance and my vocabulary.  I speak in front of large groups of people regularly. I hold a significant amount of equity in the startup where I work.

For a guy with an AA degree, I’ve done very well for myself.

The idea of a colostomy bag filled me with dread because it threatened my self-image, which is something I worked very hard to build…or rebuild. But it was more than just the fear of a leak or the smell.

The real fear was exposure. Exposure of my past, my family and where I really came from.

No matter all my effort and hard work, I feared being exposed as the son of heroin addicts and repeat felons. No matter how much I fit in, the truth would be obvious to everyone.

It may not make sense, but I associated all of that ugly history with a colostomy bag.

The very thought… I could smell it.

The fear was irrational and overwhelming. I didn’t get a full night’s sleep for weeks. And the dreams and nightmares were otherworldly. And I mean it! I wouldn’t wish those dreams on my worst enemy.

Ultimately, I was only able to manage these fears with the help of a therapist who I saw daily for several weeks after my surgery.

3.22.22

By Son of Inequity

This New England Journal of Medicine study titled “A Pragmatic, Randomized Clinical Trial of Gestational Diabetes Screening,” is billed as the largest study to date intended to determine the best of two common methods to diagnose Gestational Diabetes Mellitus (GDM) in pregnant women. All told, the Kaiser Permanente researchers who conducted the research included 23,792 pregnant women at two Kaiser Permanente hospitals in Portland OR and Honolulu, HI.

In addition to the age, weight and Medicare status of these women, the researchers documented the ethnicities of the participants with the number of patients (percentage) in each the two study cohorts:

• White 6608 (55.4) 6586 (55.5)
• Asian 1789 (15.0) 1782 (15.0)
• Native Hawaiian or Pacific Islander 623 (5.2) 619 (5.2)
• Black 329 (2.8) 328 (2.8)
• American Indian 49 (0.4) 50 (0.4)
• Multiple races 1317 (11.0) 1310 (11.0)
• Other 40 (0.3) 42 (0.4)

 

Recruiting less than 3 percent of the total with African American women and no Hispanic women is notable because of the staggering negative impact these two communities face from GDM. Hispanic women are the most likely in the U.S. to be diagnosed with the dangerous condition and African American women are the most likely to suffer long-term complications from it.

In a 2001 study of pregnant women tested for GDM at a Detroit MI medical center, the prevalence of the disease was 5.4% among Hispanic women and 3.9% among African American women. While the rate of GDM was elevated in African American women compared to White women, Hispanic women were at the greatest risk. After adjusting for other risk factors, Hispanic women were 2.5 times more likely than African Americans to develop GDM, the researchers concluded. The 2001 study included 552 black women and 653 Hispanic women who were tested at a large Detroit health system.

The Detroit study confirmed that many well-defined risk factors were predictive of GDM, including family history of diabetes, age of the mother, weight, BMI and excessive weight gain during pregnancy (1).

A 2019 study of the prevalence of hyperglycemia in women diagnosed with GDM concluded: “Non-Hispanic black women had 63% higher risk and Hispanic women and `other’ racial/ethnic women had more than double the risk for diabetes compared with non-Hispanic white women.” (2)

Since obesity is a risk factor of GDM, virtually excluding African American women from this study is inexplicable considering the elevated rate of obesity among African Americans in general, who have a 51% greater prevalence of obesity than White Americans, according to a 2009 report by the Centers for Disease Control and Prevention (3).

In a huge 2001 study conducted by Kaiser Permanente—the very same health system that neglected African American and Hispanic women in the GDM study—researchers concluded that pregnant African American women who develop GDM have a 52 percent increased risk of developing diabetes after childbirth than White women also were diagnosed with GDM during pregnancy. In fact, African American women had the highest risk of developing diabetes following GDM than any other racial group. The 2001 study included 77,666 women who gave birth from 1995 to 2009 (4).

The 2011 review article “Why Do Black Americans Have Higher Prevalence of Hypertension? An Enigma Still Unsolved” published by the Journal Hypertension, details how obesity, hypertension, familial history and other risk factors strongly associated with GDM are elevated in African Americans.

So why were Hispanic and African American expecting mothers so underrepresented in this Kaiser NEJM study?

It’s possible that the researchers were unconcerned about race and ethnicity because they believed the method used to screen for GDM, the basic blood glucose test, shows no variation due to race or ethnicity. It’s also likely that it was difficult to recruit African American and Hispanic women at the two Kaiser study sites of Portland and Honolulu, where very few Hispanics and African Americans reside.

In any event, neglecting to enroll from the two American populations that suffer the most from GDM was extremely short sighted. Kaiser is the largest managed care organization in the U.S., with approximately 12 million members in its healthcare plan, nearly 40 hospitals and more than 700 medical offices in California, Washington, Oregon, Colorado, Hawaii, Maryland, Virginia, Georgia and Washington DC. With this kind of reach, recruiting minority women at great risk of GDM should have been easy.

References:

1. J Am Med Womens Assoc, Fall 2001;56(4):181-7, 196; Obesity and gestational diabetes among African American women and Latinas in Detroit: implications for disparities in women’s health.
2. Bower JK, Butler BN, Bose-Brill S, Kue J, Wassel CL. Racial/Ethnic Differences in Diabetes Screening and Hyperglycemia Among US Women After Gestational Diabetes. Prev. Chronic Dis. 2019;16:190144.
3. Centers for Disease Control and Prevention (CDC). Differences in prevalence of obesity among black, white, and Hispanic adults – United States, 2006–2008. MMWR. 2009; 58:740–744.
4. African American women with gestational diabetes face high long-term diabetes risk, ScienceDaily, Oct. 20, 2011.

3.18.22

By Son of Inequity

For those of you who have followed my blogging, you know I never write about myself. There’s one very good reason for that. But for this post, I’m going to make an exception because who I am is central to this story.

I’m a black American man living on borrowed time.

At age 41, I’ve outlived both my parents and three of my grandparents. Both of my parents died of colorectal cancer before age 40.

While cancer killed them, soda, fried food and substance abuse were definitely accessories after the fact.

My paternal grandmother died in her 30s of an unknown cancer and my paternal grandfather died violently at 40. But he was diagnosed with lung cancer just months before he passed. Maybe he was even receiving treatment, but that’s unlikely. He was reckless and his cancer diagnosis was likely his first and last doctor’s visit as an adult.

My maternal grandfather died at 36 or 37 of lung cancer. My maternal grandmother, who avoided early death and raised me, died from complications of COPD and diabetes within a year of retiring at age 65.

Thanks to her, I didn’t make the same mistakes my parents made. I finished school and avoided drugs. I got a degree and was working in a medical lab full time by the time I turned 22.

Working in healthcare, I learned things my parents and grandparents never did, especially the importance of prevention, of genuine health care, not sick care. So, based on my family history and consultation with my doctor, I was eligible for a colonoscopy when I turned 40. But then coronavirus showed up and changed everyone’s plans.

All colonoscopies were cancelled so my doctor order an at-home screening test. For those with delicate stomach’s I won’t go into too much detail. You basically collect a stool sample and mail it to a lab that looks for early signs of colorectal cancer.

If those signs are present, you get an immediate colonoscopy to see if and where you have colon tumors, how big they are and what stage they are in. If there are no signs, you’re off the hook for another few years before you have to repeat the test.

As it turns out, there are two very different kinds of at-home colorectal screening tests:

The Fecal Immunochemical Test (FIT) detects blood in the stool sample. Blood isn’t a sure sign of cancer. Several other less dangerous health problems can leave blood in your stool as well. For example, hemorrhoids.

The other major at-home test for colorectal cancer is the multi-target stool DNA (mt-sDNA) test, better known as Cologuard, which you’ve probably seen on TV commercials. The multi-target DNA markers that Cologuard can identify are 11 genes that are very strong indicators of colorectal cancer.

In the same way there is a specific gene for brown eyes, there are specific gene mutations that are specific for tumors. If you find those gene mutations, there’s likely a tumor growing inside that patient somewhere.

This kind of cancer testing, called molecular diagnostics, is increasingly becoming a major new weapon against colorectal cancer and, in fact, all kinds of cancers. By identifying telltale genes that reveal tumor growth, molecular diagnosis allows for the early detection of tumors, often long before tumors cause symptoms or are even big enough to detect.

One of the genes detected by Cologuard is a gene called KRAS. In particular, the Cologuard test finds the sequence of the KRAS gene with a specific mutation that causes colorectal cancer. This 2015 paper titled Racial Differences in BRAF/KRAS Mutation Rates and Survival in Stage III Colon Cancer Patients revealed that the KRAS gene mutation was very common in black people with colorectal tumors, much more common than in whites, Hispanic and Asian Americans patients with colorectal cancers.

“KRAS mutation rates were highest in tumors from blacks,” the researchers write. Almost half (44.1%) of the tumors from black colorectal cancer patients had the KRAS mutation. They also found that KRAS tumors were much harder to treat that other kinds of colorectal cancer.

KRAS tumors were also more likely to lead to death or tumor recurrence in young patients. “Among patients younger than age 50 years, blacks had shorter Disease-Free Survival (HR = 1.80, 95% CI = 1.21 to 2.66, P = .004) and Time To Recurrence (HR = 1.77, 95% CI = 1.18 to 2.65, P = .006) compared with whites,” according to this research.

In a 2014 head-to-head comparison of FIT and Cologuard, published in the New England Journal of Medicine, Cologuard detected colorectal cancer accurately 92 percent of the time while FIT was accurate only 73.8 percent of the time. Cologuard was also better at detecting early tumors, or advanced precancerous lesions, than FIT, with a 42% accuracy for Cologuard and 23% accuracy for FIT.

According to the National Cancer Institute, African Americans have lower colorectal cancer screening rates than white Americans. This disparity in screening has increased as a result of the Covid-19 pandemic. The NCI anticipates a significant increase in colorectal cancer fatalities in the coming decade due to a decrease in screening from the Pandemic.

Finally, according to the National Cancer Society, African Americans are about 20 percent more likely to get colorectal cancer and about 40 percent more likely to die from it than most other groups.

So, when my colonoscopy was cancelled, guess which test I was sent?

Keep in mind that I’m an African American at high risk of colorectal cancer, one of the most deadly cancers to African American men and women. Also don’t forget that one of the tests specifically detects a gene that is very common in colorectal tumors that are frequently fatal to young African American men, just like me.

If you guessed the FIT test, you are correct.

In fact, FIT is the test that most African Americans are given for at-home screening of CRC.

Why? Because it’s cheaper than the Cologuard test.

As they say, you get what you pay for. Maybe this explains the elevated fatality rate of colorectal cancer among black Americans.

In my next post, I’ll tell you about my test results from FIT and the results when I was retested.

9.1.21

By Son of Inequity

Grand Rounds Health, which describes itself as an “integrated virtual care company” designed to “raise the standard of healthcare” has partnered with two of the biggest impediments to quality care for African Americans, Walmart and Target, to somehow do what these two companies have refused to do for their African American employees for decades.

Grant Round Health describes this new effort in a press release as follows: “Developed using insights from an innovation coalition of Global and Fortune 500 companies, the product will be the first dedicated care concierge and healthcare navigation platform focused on improving the healthcare experience and advancing health equity for Black Americans. The Black Community Innovation Coalition is comprised of EHIR members Accenture, Best Buy, Genentech, Medtronic, State Farm, Target, and Walmart.”

So, it’s an app?

The average American family spends 11% of its income on health insurance premiums, while the average African American family spends nearly double that amount (20% percent of its family income) for the same thing.

Nearly 20% of adult African Americans are underinsured and are forced to pay high out-of-pocket costs for basic health healthcare needs not covered by these inferior plans.

Government provided health insurance for the poorest American’s is provided by the Medicaid program, which provides coverage for nearly 70 million Americans. Nearly one-third of the total black population of the U.S. receives insurance through the inefficient and inferior Medicaid program.