Gaps in healthcare for adults make children victims, too

What happens to at-risk children whose parents die prematurely, leaving them orphaned?

This is a question that has not been examined in depth, even though we know disparities account for early death in certain minority populations, leaving their children in precarious emotional, educational and financial situations.

For my National Health Journalism Fellowship project, I plan to write about at-risk children who have lost their parents to illuminate this societal problem.

We’ve known for a long time that gaps exist in health care, causing early death among certain populations, including African Americans, Hispanics and the rural poor of all races and ethnicities.

For example, the Sinai Urban Institute reported in March 2014 that African American women who have breast cancer are, on average, 40 percent more likely to die from the disease than are white women.

In some cities, such as Los Angeles, the risk is even greater — African American women with breast cancer are 70 percent more likely to die from the disease than are white women.

Many cancer experts, including Dr. Otis Brawley, chief medical officer for the American Cancer Society, believe this gap “is something black socially, not biologically.”

He cites a study that showed that African Americans were more likely to die from early-stage colon cancer than were whites. That study was later shown to be inaccurate because the pathologists were not examining as many lesions in African Americans as they were in whites, classifying the toll of disease in African American men inaccurately.

Other disease groups show similar gaps in survival, and many, such as stroke and diabetes, show a higher prevalence in minority populations. The South’s Stroke Belt is evidence of long-standing gaps in primary care in the rural South. African American men are four times more likely to die from homicide compared to other American men — and about seven times more likely to die from homicide than white men.

We in the media are getting better at writing about health disparities, even if our readers wince or want to click to another page when we use the word “disparity.” It’s always been challenging, though, just to interest our editors in these kinds of stories. These stories often do not appeal to people who buy a newspaper or subscribe to a website, and they are not the fun, immediate, or sensational stories most likely to get Tweeted, shared on Facebook or shared on YouTube.

Talk about disparities has been most likely to be included in articles about the Affordable Care Act and discussion about the need for insurance. But not much, if any, has been written about the toll that premature death takes on the children who lost their parents.

I learned about this gap firsthand when I was writing my thesis last year at Columbia on the burden of cancer on the poor, and I fell into its trap. My focus was on a 44-year-old single mother of six who was battling metastatic breast cancer. Donna had to take a bus, then a train, then a bus to get to treatment. She had no one to cook or clean for her or run errands, pick up a prescription, or make dinner for the kids on the days she received chemo. Of course, she never had that kind of help on any day, but the lack of it was most pronounced on the days she would return from the hospital, weary and sick, with a houseful of kids, the youngest one 7, to take care of.

As time passed, I saw how these children had become their mother’s caregiver, carrying her to the toilet when she couldn’t walk to it, taking care of one another, managing her prescriptions, giving her baths. Things only became worse after Donna died on Sept. 9 last year. Because they have no living relatives to adopt them or take them in, they live in Donna’s apartment with their 24-year-old sister, her toddler, her boyfriend and his child. Their sister, who must work of course, barely has time for her younger brothers, who often are left on their own and have no help with homework and medical appointments. I wrote about the family's experience for The Atlanta Journal-Constition.

Sad as this is, I know it cannot be unique. It dawned on me, after watching what Donna’s kids go through, that the same conditions that led to Donna’s diagnosis and early death also led to a deprivation for her children that will likely keep them imperiled educationally and financially their entire lives.

For my project, I am going to examine how often children are orphaned by the death of a parent and what their lives are like. First, I will look at death rates in Georgia by age and race, and I aim to see which agencies have data that I can look at to establish how many at-risk children lose their parents each year in Georgia. I want to focus on metro Atlanta, but I also want to start larger to see what kind of data I am able to get from the state. Georgia has a horrible problem with rural health care, and it may be that the problem is even more pronounced there.

The second part will tell the stories of children who are affected by this early loss of a parent. While I am most familiar with Donna’s children, I am far too close to write about them. If my hypothesis holds up, I will find stories equally compelling.

This is one of those stories that you almost wish you would find no one for. I don’t want there to be at-risk children living in neglect and abandonment. But, I know there are. Getting to know the story of Donna’s children has opened my eyes to a sad side of life that I never thought about — the burden of the health care gap when it comes to the survivors of those who die young. I'm eager to begin.

[Photo by La Citta Vita via Flickr.]