Yves here. One factor that may contribute to the reluctance of black families to seek out what amounts to charity is how uncharitable our government is. Applications for social safety nets are by design so difficult as to be punitive. When you are on the receiving end of that sort of thing, even when it is purely bureaucratic, it’s hard not to take it personally.
However, the article points to a second big issue: crowdfunding by blacks gets much lower donations than by whites.
Another possible reason for reluctance by blacks is underlying poverty. That does not merely mean fewer with much disposable income in their immediate community. It also means that they were barely making ends even before the illness, and medical costs plus income loss and uncertainty as to whether and when they’ll be able to earn income at their old level means fundraising may feel like a fraud. Even if it might solve their debt problem, they don’t see a way to fill the income hole too.
I imagine our non-US readers will be appalled at the fact that we let medical charges drive patients into bankruptcy and even poverty and homelessness. I’ve similarly heard of cases (as in individuals two degrees of separation from me, not remote news stories) of elderly couples where they didn’t have enough income to pay for the medications both needed, so they had to decide who would go without and die. We are not a civilized nation.
By Noam N. Levey, Senior Correspondent at KFF Health News, previously a reporter at Los Angeles Times, for his last 12 as the paper’s national health care reporter He has also been published in Health Affairs, JAMA, and The Milbank Quarterly. Before his stint at the L.A. Times, he was an investigative reporter for the San Jose Mercury News. Originally published at KFF Health News
When Kristie Fields was undergoing treatment for breast cancer nine years ago, she got some unsolicited advice at the hospital: Share your story on the local news, a nurse told her. Viewers would surely send money.
Fields, a Navy veteran and former shipyard worker, was 37 and had four kids at home. The food processing plant where her husband worked had just closed. And Fields’ medical care had left the family thousands of dollars in debt.
It was a challenging time, said Fields, who has become an outspoken advocate for cancer patients in her community. But Fields and her husband, Jermaine, knew they wouldn’t go public with their struggles. “We just looked at each other like, ‘Wait. What?’” Fields recalled. “No. We’re not doing that.”
It was partly pride, she said. But there was another reason, too. “A lot of people have misperceptions and stereotypes that most African American people will beg,” explained Fields, who is Black. “You just don’t want to be looked at as needy.”
Health care debt now burdens an estimated 100 million people in the U.S., according to a KFF Health News-NPR investigation. And Black Americans are 50% more likely than white Americans to go into debt for medical or dental care.
But while people flock to crowdfunding sites like GoFundMe seeking help with their medical debts, asking strangers for money has proven a less appealing option for many patients.
Black Americans use GoFundMe far less than white Americans, studies show. And those who do typically bring in less money.
The result threatens to deepen long-standing racial inequalities.
“Our social media is inundated with stories of campaigns that do super well and that are being shared all over the place,” said Nora Kenworthy, a health care researcher at the University of Washington in Bothell who studies medical crowdfunding. “Those are wonderful stories, and they’re not representative of the typical experience.”
In one recent study, Kenworthy and other researchers looked at 827 medical campaigns on GoFundMe that in 2020 had raised more than $100,000. They found only five were for Black women. Of those, two had white organizers.
GoFundMe officials acknowledge that the platform is an imperfect way to finance medical bills and that it reaches only a fraction of people in need. But for years, health care has been the largest category of campaigns on the site. This year alone, GoFundMe has recorded a 20% increase in cancer-related fundraisers, said spokesperson Heidi Hagberg. As Fields learned, some medical providers even encourage their patients to turn to crowdfunding.
The divergent experience of Black patients with this approach to medical debt may reflect the persistent wealth gap separating Black and white Americans, Kenworthy said. “Your friends tend to be the same race as you,” she said. “And so, when you turn to those friends through crowdfunding for assistance, you are essentially tapping into their wealth and their income.”
Nationally, the median white family now has about $184,000 in assets such as homes, savings, and retirement accounts, according to an analysis by the Federal Reserve Bank of St. Louis. The assets of the median Black family total just $23,000.
But there is another reason Black Americans use crowdfunding less, Fields and others said: a sensitivity about being judged for seeking help.
Fields is the daughter of a single mom who worked fast-food jobs while going to school. The family never had much. But Fields said her mother gave her and her brother a strict lesson: getting a hand from family and friends is one thing. Asking strangers is something else.
“In the Black community, a lot of the older generation do not take handouts because you are feeding into the stereotype,” Fields said.
Her mother, whom Fields said never missed paying a bill, refused to seek assistance even after she was diagnosed with late-stage cancer that drove her into debt. She died in 2019.
Confronting the stereotypes can be painful, Fields said. But her mother left her with another lesson. “You can’t control people’s thoughts,” Fields said at a conference in Washington, D.C., organized by the National Coalition for Cancer Survivorship. “But you can control what you do.”
Fields said she was fortunate that she and her husband could rely on a tight network of relatives and friends during her cancer treatment.
“I have a strong family support system. So, one month my mom would take the car payment, and his aunt would do the groceries or whatever we needed. It was always someone in the family that said, ‘OK, we got you.’”
That meant she didn’t have to turn to the local news or to a crowdfunding site like GoFundMe.
UCLA political scientist Martin Gilens said Fields’ sensitivity is understandable. “There’s a sort of a centuries-long suspicion of the poor, a cynicism about the degree of true need,” said Gilens, the author of “Why Americans Hate Welfare.”
Starting in the 1960s, that cynicism was reinforced by the growing view that poverty was a Black problem, even though there are far more white Americans living in poverty, according to census data. “The discourse on poverty shifted in a much more negative direction,” Gilens explained, citing a rise in critical media coverage of Black Americans and poor urban neighborhoods that helped drive a backlash against government assistance programs in the 1980s and ’90s.
Fields, whose cancer is in remission, resolved that she would help others sidestep this stigma.
After finishing treatment, she and her family began delivering groceries, gas cards, and even medical supplies to others undergoing cancer treatment.
Fields is still working to pay off her medical debt. But this spring, she opened what she calls a cancer care boutique in a strip mall outside downtown Suffolk. PinkSlayer, as it’s called, is a nonprofit store that offers wigs, prosthetics, and skin lotions, at discounted prices.
“The one thing my mom always said was, ‘You fight whatever spirit that you don’t want near you,’” Fields said as she cut the ribbon on the store at a ceremony attended by friends and relatives. “We are fighting this cancer thing.”
In one corner of her small boutique, Fields installed a comfortable couch under a mural of pink and red roses. “When someone is in need, they don’t want to be plastered all over your TV, all over Facebook, Instagram,” Fields explained recently after opening the store. “They want to feel loved.”
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“Applications for social safety nets are by design so difficult as to be punitive”
Reminds me of a book I read as an undergraduate, “Street-Level Bureaucracy Dilemmas of the Individual in Public Services” by Michael Lipsky
The core dilemma of street-level bureaucrats is that they are supposed to help people or make decisions about them on the basis of individual cases, yet the structure of their jobs makes this impossible. Instead, they are forced to adopt practices such as rationing resources, screening applicants for qualities their organizations favor
https://www.russellsage.org/publications/street-level-bureaucracy
It’s not uncommon for those street level bureaucrats to be hired from the populations they “serve” and to lord it over them. Years ago when I was a teacher in Philly, my adult students had scads of stories of being treated like (rap by the people who were supposed to be helping them. People who were their neighbors.
Ego gratification perhaps? Being fair, and I don’t want to be, it is often orders given from on high to the people doing the actual work of interviewing and processing those applications that is often the problem. Even if someone wants to approve an application they are often forbidden from doing so.
It still is unpleasant to have some sanctimonious twenty something informing me that the ginormous monthly GA (general assistance) payments of $65 were a loan that I am supposed to pay back, but that they wouldn’t necessarily look to catch me if I didn’t.
I occasionally think that our whole society has been reorganized to inflict gratuitous cruelty as an entertaining perk for those higher up.
And here I’m thinking about the subprime mortgages triggered into default by what I can’t only call US govt fraudulent HAMP mortgage mod promises. If you look at the demographics of those who were defrauded, the black and brown communities lost a much large portion of their family wealth than the white demographic overall.
The Crisis in Black Homeownership
How the recession turned owners into renters and obliterated black American wealth.
https://slate.com/news-and-politics/2014/07/black-homeownership-how-the-recession-turned-owners-into-renters-and-obliterated-black-american-wealth.html
At this point the neoliberal corporate or govt “helping hand” looks like a trap to many, including me. (Remember when B said he’d eliminate student loan debt, or allow student debt to be discharged in bankruptcy. Good times.)
Cancer is ubiquitous and seemingly everywhere. Even given everything I disagree with about the Biden administration, I submit the cancer moonshot is worth pursuing. The above anecdote is discouraging to say the least, because a GoFund me page if one is deemed absolutely necessary is a true last resort. Good to see a counter, that a close knit family or community is standing in to assist. Added, we are not a serious country.
I hate to go onto the personal route, both parents passed away from cancer. I can think up a list of 10 to 15 that were family relations or immediate connections to a colleague from work where an individual passed away. The survivors are out there, lest I sound decidedly hopeless.
I hear you on the personal side of cancer, and on the idea of a moonshot cure.
However, when i look at the causes of the cancer in my own family…it’s quite clear to me that prevention is the answer, NOT cure.
Hormone Replacement Therapy was marketed to my mother as a solution for the difficulty she had with menopause symptoms. She got breast cancer a year later.
My sister got lymphoma…best guess was that it related to all the fake sure she consumed. Lots and lots of equal in her coffee.
Maybe we should be asking our government to stop GIVING us cancer in the first place???
RFK jr, for all his faults, at least has a good focus on environmental issues.
I’ve had three cancers so far. One might begin to think it’s fate, except there’s no cancer on either side of the family. Everything else (the usual suspects)… but not cancer.
I’ve been prescribed metformin for the last five years, up to 2000 mg. a day over the last six months. The lab tests say I have a blood glucose problem, but as it turns out not because of insulin resistance. The metformin made no difference in my numbers. Now metformin-free, the numbers remain the same, but a little too high for ‘normal’. What I have is a gut emptying-issue and I think maybe I always have; it just got worse with age.
But I’m thinking about ‘economies of scale’ now… let’s say you’re a manufacturer of metformin or insulin* and you need your product to be both competitive and affordable, even as your supply lines are being squeezed from far away. What strings can you pull to ensure continued profitability? More customers perhaps, in a country without federal prices controls, where patients pay the highest prices in the world for their healthcare. If I were them (shudder) I might find ways to encourage the healthcare systems to broaden their scope and red flag for attention anyone whose blood glucose came up high that morning at the lab (as they just did my husband at 104). Diabetes ‘runs in his family’ (whose doesn’t?), so best to keep an eye on him in the future… and metformin has a safe track record as far as the public knows, so where’s the harm? Brownie points for the eagle-eyed healthcare system.
But I’m wondering if it isn’t much like prescribing PPI’s, a band-aide in pill form. The patient feels better for a while, maybe he numbers drop a bit, but the problem for the patient isn’t really diagnosed and addressed. For the manufacturer and the pharmaceutical companies though a crisis is averted for another quarter. Sales and the stock prices stay up.
I wonder what effect there was on sales in telling the public that it seemed that those who best survived Covid also happened to be on metformin? Like it was a ‘wonder drug’ that’s available now, without really explaining how.
Our immune system is in our gut microbiome. The evidence that there was some faltering in my ability to fully absorb enough nutrients from my food has been evident since I was a child. We are always producing cancerous cells and our immune systems are supposed to identify and kill them. How did three cancers get past my defenses? I ask myself this question every day, every surviving cancer patient should. I think the answers lie where healthcare fears to tread because there’s no profit to be found there.
Pointing to a patient’s nasty habits is handy… everyone has at least one – shrug – that can be blamed. Meanwhile, time marches on and the patient leaves Sub-clinical Land and on toward the Final Disease. It was preventable but not profitable.
*or commonly prescribed chemotherapy drugs?
” Going public ” is what they should have done ! Not for ” Go Fund Me ” but for advocacy and organizing other victims of the barbaric U.S. healthcare system to fight for Single payer. AND they should have refused to pay their medical bills. These are the people single payer organizations need to organize, but they don’t. Because they are too busy begging and groveling Democratic party politicians to sign on to legislation that the politicians have no desire to fight for.
Politics is economics. People who say “I don’t do politics, I’m not into politics” are missing the point that our healthcare payment system IS politics. Anything involving potentially large sums of money in this country is politics. Anything involving land use is politics. Yes, going public is a good thing. Put pressure on the current awful system and politicians.
I disagree about flat refusing to pay medical bills. Destroying your credit rating with a refusal to pay will increase what you have to pay for your car insurance, your homeowners/renters insurance, the interest rate you’re charged for a loan (if you can even get one that isn’t a payday scam). Refusing to pay lets all the other rentier outfits pluck even more feathers from you. There are ways to delay paying that don’t hurt your credit. Ask for itemized audits and paper printouts of the audit. Do it twice. Challenge what looks wrong. etc. It’s an effing pain and a time consuming chore. It’s going to “war” against a financial predatory outfit. If all else fails declare bankruptcy. The system stinks.
Just when you think you couldn’t possibly be more ashamed of the US medical healthcare system…
Ashamed, outraged, and victimized. The US does not have a health care system, it has a byzantine patchwork of private insurance fiefdoms and a BigPharma cartel/oligopoly. What we have in the USA is what I call a Health Extortion system. The US spends 17-19% of GDP on so-called health care, while producing the worst health outcomes of the entire OECD.
https://www.commonwealthfund.org/publications/issue-briefs/2023/jan/us-health-care-global-perspective-2022
Our Disease Capitalism bears the same relationship to “health care” as “Crassus Fire Brigade” did to a Fire Department.
And look at what happened to Crassus. Defeated in the desert. Have we here in the West already had our Carrhae and just don’t know it yet?
See: https://en.wikipedia.org/wiki/Battle_of_Carrhae
History seemingly does not repeat, but it certainly does rhyme.
If only our Neocons would go fight and die somewhere!
Crassus met a fit end, since antiquity Clio’s developed a sense of irony.
That we could be so lucky!
Incredible how these stories all accept the horrendous US health care financing system as a given, like the weather. “Solutions” involve African Americans overcoming the stigma of asking strangers for assistance or opening a 501(c)(3) store. Debt peonage as self-actualization triumph.
No political analysis, not even a reflexive attempt to solicit a rote comment from the local Congresscritter on why the evil of the other party is the reason people face this kind of debt.
Considering how badly the USA does on Maslow’s Hierarchy of Needs, I’m surprised most states don’t sell the sick peons off to gun ranges, after all so many of the young and still healthy are sent into slave labour camps.
Or what about creating a Soylent Green commodity market? Since the US has a declining average life expectancy, and people cannot afford Health Extortion, I think Soylent Green is the answer!
SG can provide organic, green energy as well. We can efficiently utilize the surplus population, and solve the climate crisis at the same time. And, wait, there’s more: we will have a new commodity category in high demand and make a killing getting in on the ground floor. What’s not to like? We need the Soylent Green revolution to save the planet.
(sorry for the twisted humor)
Or this. The owners selling their policies are generally cash strapped and in need of immediate medical care for a serious condition. Because markets….
https://viatical.org/blog/invest-viatical-settlements/
Thanks for the link, that’s no joke.
And as bad as the situation is for most African Americans (and lower-income folks in general) it is even worse for indigenous Native American folks. As a group, they have the lowest average life expectancy, compared to other racial categories
https://www.nicoa.org/cdc-study-shows-lower-life-expectancy-for-natives/
It is very telling that our politicians and mass media almost never deal with the most serious problems we face: declining health, skyrocketing debt peonage, worsening health extortion outcomes, price-gouging, monopoly abuses, etc. They do talk about racism, but only in the most superficial terms, seldom, if ever, any serious economic analysis.
Instead, they focus on the most emotionally-manipulative topics to distract the public and perpetuate the illusion of democracy. The “news” has become little more than celebrity gossip, distractions, superficial fluff, and outright falsehoods – especially in matters of international politics/economics.
Your experience isn’t exactly a problem for the ruling class. In fact, our experience is the problem to which they propose themselves the solution, but of which in fact they are the conservators.
Hunkerdown’s Rule of Intersubjective Perplexity: The larger the imaginary friend, the more stupid it must necessarily be.
If you have health insurance, isn’t there an annual out of pocket maximum, say like $3,000 individual, $6,000 family? Surely some may be forced to file bankruptcy, but the many?
Or is it because the treatments actually needed aren’t covered?
I work sometimes in a big open-air room with cubicles, but you can hear all the other staffers when they are on the phone. I hear staffers asking people on the phone for their monthly expenses: asking, for example, what other bills do you have? Cable tv? etc. First of all, it seems like that person’s privacy is being invaded by this phone call, when it could be done more discreetly via the computer, I would think. Secondly, it is just cringeworthy that my company needs to grill people and have them defend every dollar they spend, just to be “qualified” for assistance.
Anyone who is in debt and keep paying for tv services needs their head examined