Newswise — In the spring of 2020, just as it became clear that New York’s long ignored diabetes epidemic was accelerating rampant COVID sickness and death, the federal government and the New York State Department of Health defunded our successful diabetes self-management program in the South Bronx. The program had reached almost 2,000 Medicaid patients known to have Type 2 diabetes with a 6-session course well-evaluated to help them reduce blood sugar and, along with that, reduce their risk for other diabetes-linked complications, like heart disease and kidney disease, which were also proving fatal with COVID.1
Ending this program just when its potential for preventing COVID deaths became apparent should have been impossible. It wasn’t. The Bronx was entirely stripped of reliable community access to diabetes self-management education. The poorest urban congressional district in the United States, and already subject to the state’s highest diabetes death rate, the Bronx proceeded to suffer the state’s highest COVID death rate.
“I really couldn’t understand it,” said Evelyn Rivas, the Coordinator of the program. “People wanted this so badly---and needed it. We took it everywhere, all over the community.”
Given the accumulating evidence that, for diabetics with well controlled blood sugar, COVID outcomes are not significantly worse than for COVID patients who don’t have diabetes, any destruction of efforts and programs to control blood sugar can only be described as a public health crime.2
It is no different than if federal and state medical authorities selectively decided to withhold the few available COVID treatments from people with diabetes. The millions with this disdained and ignored disease were left to face death rates that could have been significantly lowered.
But, as the founder of Health People, and having struggled for years along with other community groups to fight diabetes, I knew that the appalling Bronx shutdown reflected a reality throughout the United States. In the 20 years that this disease has become the nation’s most widespread, costly and debilitating epidemic—with 34 million people now having developed Type 2, or “adult onset” diabetes—there has been no coherent national effort to improve diabetes care, outcomes and prevention. To the contrary, outcomes are in many ways worse than they were 20 years ago, as witness the 50% increase in diabetes related lower-limb amputations since 2009.3
Now, with COVID, the only way to properly define the state of affairs is that public health authorities have knowingly left millions with diabetes to face an even greater risk of preventable death.
Neighborhood after neighborhood where diabetes rates now ravage up to 20% of the adult population are overwhelmed by a level of illness that has become almost indescribable. Millions of people are tethered to medications, endless emergency room visits, daily misery, and to the dialysis centers now seemingly on every corner where the low-income live. A terrible, paralyzing sense that ill health is their destiny dominates these communities.
The place that diabetes occupies in our national life—widespread, devastating, incredibly expensive, yet disdainfully ignored for effective responses is unique in the history of public health.
Even the uncontestable fact that proven diabetes prevention and self-care education massively saves health expenditures doesn’t make that education happen.
Diabetes, in fact, is so widely accepted as an acceptable scourge of minority and low-income communities that its appalling extra devastation through COVID has changed nothing. Public health officials knew that COVID was almost bound to strike heavily at diabetics. As a Reuter’s article underscores, coronaviruses already have a clear record of especially injuring people with diabetes. In the 2003 coronavirus outbreak known as SARS, or Severe Acute Respiratory Syndrome, more than 20% of people who died had diabetes and in the 2013 MERS (Middle East Respiratory Syndrome) epidemic, up to 60% of patients who ended up in intensive care or died had diabetes.4,5
Yet, for COVID, no warnings were issued and nothing was done; the devastation struck everywhere. In New York, even by April 2020, a first large study of 5,700 hospitalized COVID patients confirmed that 34% had diabetes. In the “diabetes belt” of the South and Southwest, a Reuter’s review of COVID deaths through June showed that almost 40% occurred among people with diabetes.4
Nothing has still been done as we wait for a “second wave” of COVID. Even though we now know that improving self-management to help people with diabetes lower their blood sugar is highly protective against the worst COVID outcomes, including ICU stays, ventilation and death, there is no national—or even any evident state efforts—to organize and deliver that self-management.
And the evidence that excess blood sugar actually increases COVID receptors in the body only makes public education more important.6,7
Health People, our South Bronx organization, had only been able to provide its groundbreaking, accessible self-management program by obtaining special, but painfully limited federal funds. Even in the face of the carnage of COVID, when that funding ended, nothing replaced it—from the federal, state or city governments. Far from helping us continue, the New York State Department of Health simply “seized” the remaining federal funds which had been set aside to keep this life-saving program in place for at least another year, totally destroying it.
It highlights the national disdain for diabetes that even though President Trump and New York Governor Andrew Cuomo have opposite public profiles in the COVID epidemic---the one considered to have utterly failed in leadership and the other widely praised for stepping forward---both their administrations felt free to brutally cut off self-care education that was urgent for people with diabetes.
No one of influence said anything. Nationally, not a single prominent figure or politician has made reforming diabetes care and prevention a real cause.
Indeed, when the subject is diabetes, the usual American forces of reform and change are missing. They do not, in any way, protest its mass carnage of unnecessary death and disability. If Black Lives Matter, why doesn’t diabetes matter as it so heavily hurts Black populations that African Americans have triple the diabetes-related lower limb amputation rate of others.8 In a “woke” age, when social justice foundations are investing multi-millions in causes—from Defund the Police to eviction moratoriums—for the aid of minority communities, why hasn’t one major foundation invested in promoting serious reform in diabetes prevention and care?
That investment that could rapidly improve more minority and low-income lives than anything else on the “woke” agenda; but, as a cause, it doesn’t exist.
Unless we can understand how—despite all the seeming public lament about COVID “disparities”—diabetes remains rampantly unaddressed, we can never have anything approaching “health” in the United States. True reform requires a sharp look at a range of challenges. Diabetes, above all, presents a stunning collision—as destructive as it is instructive—of race and class with the powers of the medical industrial complex, now the nation’s largest “industry.”
Major factors in this collision include:
- Diabetes most hurts communities of color—with 16% of African Americans having diabetes, 15% of Hispanics and 12% of whites. However, the unifying theme for all these groups is that diabetes most affects those with the least income—that is, those with the least power and influence. The single time millions in federal and state health dollars were effectively used for community-led disease education and prevention—as desperately needs to happen in diabetes—is the AIDS epidemic. But AIDS is infectious while diabetes is not. After initial reluctance to address AIDS, fears that it would spread from gay men and injection drug users, the most heavily struck groups, led to groundbreaking government support for community-provided prevention.
If even a small measure of the billions that have been poured into COVID, obviously also infectious, had ever been used for basic diabetes prevention, self-care education and clinical reforms, the diabetes epidemic would already be in reverse.
- Diabetes is a major commodity of the medical industrial complex. It generates $237 billion a year in direct medical costs, the major part of which is paid by Medicaid and Medicare.9 With its single-minded focus on income-producing clinical procedures and “treatment”, however, the medical industrial complex blocks prevention and wellness by refusing to pay for it. (Neither Medicaid or Medicare, for example, will reimburse community-provided self-care education.) In this respect, disdain for the frontline doctors who have been left, without support and appropriate tools, to try to care for a Tsunami of sicker and sicker patients, is as deep as disdain for the millions of diabetes patients who could unquestionably be much better.
Lower-limb amputations, for one example, are substantially preventable through a combination of patient education and targeted clinical care. But neither this real patient education nor limb-saving clinical care happens as a regular part of care---or is properly supported by public insurance.8
- Public and media reporting on diabetes---and public understanding---is painfully limited. On the one hand, the public generally thinks it knows what diabetes is---a disease of obese people who consume too much sugar. On the other, there is little public understanding that diabetes is widely preventable, often reversible and that, with the sugar laden American “food supply”---where sugar water is the first ingredient even in much commercial salad dressing---one-third of people who develop diabetes are normal weight.
“News” coverage of diabetes is largely confined to recitations of the growing caseload--- and scolding reports on the rise in obesity. The educated “overclass” that forms the media seem unable to consider that better outcomes are even possible for an “underclass” with rampant diabetes. Almost no media coverage highlights ways to make progress. Recent ProPublica coverage of a Mississippi doctor working to prevent amputations is an impressive, but lonely exception.
The singular branding of diabetes as a “fat disease”, above all, reinforces the disdain that surrounds it. In an age when the influential and “woke” are almost obsessed with their own self-curation of “health”--- particularly thinness--- the idea that overweight diabetics represent a serious issue at the center of our future as an equitable and truly healthy society is a non-starter. Almost any other “problem population” is considered more worthy. It is telling, for example, that policy reform even for drug addicts is central to the woke agenda, but the ways the medical industrial complex has turned millions of ill and fat people into sheer commodities is not an issue at all.
Yet, these disdained millions do also, in fact, represent a singular hope---and asset---for rebuilding national health. That is because, prominently among diseases, diabetes can be significantly controlled by self-care and preventive education that stricken communities can themselves provide; as people help each other to gain diabetes control, they start empowering the wider community to see a new future where health becomes possible.
I would like to share this vision of the future by beginning with the story of Loretta Fleming. In 2014, Loretta, an African-American Bronx public housing resident, was almost crushed by diabetes. She weighed 378 pounds, drank two 2-liter bottles of soda a day and her A1C---a blood sugar measure---was a close to lethal 11%. Every effort to lose weight by herself had failed so badly that she was almost resigned to a diabetes death. As a last desperate measure, she joined an early Health People diabetes self-management course. Within 3 years, she had lost more than 100 pounds, and her A1C was 6.4%, within normal range.10
She had also become a diabetes peer leader at Health People and helped launch our groundbreaking initiative to conclusively show that low-income people with diabetes will flock to effective self-care education. She and a corps of 14 other peer educators engaged almost 2,000 Medicaid recipients with diabetes in a well evaluated 6-session course in self-management---a record for community-provided diabetes self-management education in New York State.
The strategies that Health People used to assure its program reached the highest need populations are important to understand. First, Health People entirely trained and fielded local Bronx residents like Loretta Fleming, who, themselves, had diabetes or diabetic family members, to conduct the self-management course; this corps of peer educators knew their community and, crucially, could make people with diabetes feel comfortable and accepted. Second, the peer leaders took diabetes education out of medical settings and brought it to community sites----from public housing to drug treatment programs to churches---where it was very accessible.
The peers were also trained to provide top notch and proven self-care education. The Diabetes Self-Management Program, or DSMP, Health People used was originally developed at Stanford University. It is well proven to lower blood sugar and reduce a range of diabetes-related complications---including a 90% drop in new cases of kidney disease in the first year after participants take the course. It also saves $2,222 in overall medical costs in just the first year, paying for itself immediately.11
People loved it. So widely disdained as fat and “unreachable,” now people with diabetes were receiving solid information, learning to constantly read labels to fully understand the huge amounts of sugar and fat in “ordinary” American food, and brainstorming together to improve their nutrition, and start exercising, in neighborhoods that offer few resources for ordinary health.
When the peers brought the program to homeless shelters, and also linked homeless participants to key health resources such as primary care, evaluation by the New York City Department of Health showed that the diabetes-related emergency room visits of participants plunged by 45% within six months.
Providing a program that takes this key community approach---training local educators and providing the self-care sessions at truly accessible places---could easily be done across the nation. Health People’s own special training to prepare DSMP peer leaders, is 4 weeks long and we have proven it gives low-income people, never before involved in providing health education, the skills and support to obtain outstanding results.
Every diabetes-impacted area of the country should have the capacity to field local peer educators and reach as many people with diabetes as possible; that alone would start to reverse what still is our most devastating epidemic. The savings to Medicaid and Medicare—of more than $2,000 in medical costs just the first year for each DSMP participant—could readily fund an effective national program.
And beyond self-care education is the further, exciting prospect of teaching people with diabetes about plant-based nutrition – a way of eating that frequently results in reversing diabetes.12
That is the hope----local training and local delivery.
This hope could be realized almost immediately except for the failure of public health and political powers to turn to prevention and wellness—and overcome the grip of the medical industrial complex.
The astounding triumph of dialysis shows how raw and unchallenged the powers of this industrial complex are. Dialysis (or a kidney transplant, if available) will be the fate of EVERY diabetic diagnosed with kidney disease. In the United States, some 525,000 people---40% of them with diabetes, are already on dialysis and the number of new dialysis patients is growing by almost 90,000 a year.
Overall dialysis costs the United States $35 billion a year, again with some 40% of costs resulting from diabetes. But, follow-up of the Diabetes Self-Management Program, with its 90% drop in new cases of kidney disease in just the first year after participation, suggests how rapidly most diabetes-related dialysis cases and costs could be avoided. The nation could save literal billions even while freeing thousands and thousands of people from spending the rest of their life tethered to dialysis----an exhausting, three times a week, procedure.
The average annual cost of dialysis is currently $50,000 to $90,000. By contrast, it costs about $900 per participant to provide the Diabetes Self-Management Program, with its major reduction in kidney disease. Neither Medicaid nor Medicare will regularly pay for the DSMP, confining any support to limited special grants instead of the steady reduction in kidney disease that would be possible through regularly reimbursing community groups to educate low-income diabetics.
But, dialysis gets reimbursed very reliably. Under special rules, Medicare pays for dialysis for patients of every age, not just the elderly. With reliable and large Medicare reimbursement, profits are reliable and large. Fresenius, an international dialysis company with the most American patients of any dialysis firm—200,000 patients at 2,400 American dialysis centers---reported a $400 million profit in the second quarter of 2020. Nonetheless, Fresenius also managed to obtain $137 million from the American Paycheck Protection Program (PPP), the special federal funding which was supposed to be given to small businesses faltering because of COVID.13
I can’t help but contrast how Fresenius secured this money even as Health People’s Diabetes Self-Management Program was being defunded by the federal government. That $137 million alone could have launched self-care programs across the country which could have given more than 150,000 people with diabetes the advantages of well proven self-management education.
And now those advantages also include less threat from COVID---in addition to significant protection from kidney failure, blindness and amputation. A recent British study found that diabetics with an A1C of 7.6%, or more, had double the COVID death rate of those below 7.6%.14 Loretta Fleming’s 6.4% A1C is now well below that. Eighty percent of our other peer educators with diabetes also now have A1Cs below this cutoff.
Even in the age of COVID---and in the county with New York’s highest COVID infection rate---these peer educators have a chance.
Most low-income people with diabetes in the United States don’t have that chance.
How can we say “Black Lives Matter” while Americans with diabetes are exploited to produce staggering profits for dialysis companies, but governments at every level fail to support even the self-care education that can protect their survival? Can we say any lives with diabetes matter?