The nomination of Robert F. Kennedy Jr. as secretary of health and human services has sparked considerable outrage, focused on his positions, often considered crazy, on issues like vaccines and water fluoridation. Yet we should still pay full attention to his cogent analysis of the chronic disease crisis which is the health crisis of our time.
In the three decades that I’ve led a South Bronx program that confronts chronic disease by training local residents to teach others how to stay well, I have, like so many on the frontlines, watched aghast as chronic disease grew worse and worse.
Whether it’s diabetes, which now claims 20% of adults in some communities, asthma, high blood pressure or some other chronic condition, government agencies — federal, state and local — repeatedly ignore clear ways to slash this national burden. The U.S. with the most expensive health system among Western nations, has the worst life expectancy.
Kennedy is correct in describing “corporate capture” as the predominant reason for this profound dysfunction. He has articulated our national distress more clearly than any major figure I’m aware of — or at least has been able to attain a platform and use it. The public has little idea how unnecessary and preventable our crushing level of chronic illness really is.
The appalling role of major government insurers in perpetuating chronic disease stands out. Medicaid, the insurer for the low-income, is administered by the states, which pay some 30% of its cost. Medicare, funded by the federal government, insures seniors, and pays for most dialysis in the U.S. Both are under the auspices of the Centers for Medicaid and Medicare Services (CMS).
Through warped reimbursement formulas and priorities, Medicaid, and especially Medicare, are destroying primary care, as they continuously underpay frontline doctors while at the same time allow millions of Americans to get sicker than they should be. That itself sounds crazy but consider how CMS promulgates patterns of sick care to benefit targeted industries:
One million Americans will soon have what is formally known as End Stage Kidney Disease (ESKD). These are mostly people over age 65 whose kidneys no longer properly remove wastes. They must go on dialysis which now costs $90,000 a year, seek human kidney transplants which are in short supply, or die. ESKD’s main cause is diabetes and, secondly, high blood pressure. The $30.7 billion annual bill for dialysis, which is largely controlled by two huge for-profit companies, is central to Medicare’s near-bankruptcy.
But federal public health officials know perfectly well how to prevent ESKD. They know because two decades ago the federal Indian Health Service (IHS) implemented a stunningly effective prevention program which cut new cases of ESKD among its 2.2 million tribal patients by more than half, while spending 40% less per patient than the American average.
For 20 years, the program made kidney care convenient by scheduling it at patients’ regular diabetes or primary care appointments, used routine testing to catch kidney disease early — when proper care and “lifestyle changes” could prevent end stage collapse — and provided coaching and consistent self-care education to help patients drive down their own blood sugar and blood pressure.
We’d now have at least 200,000 fewer cases of ESKD, if this program had been broadly replicated, yet the federal government has made no effort to see it widely used.
We see the staggering impact of federal laws requiring FDA approval of even minimally effective drugs and (until recently) blocking Medicare from negotiating for better prices in the first Alzheimer’s treatment that Medicare is covering. Costing $26,000 annually, Leqembi, was FDA-approved despite wide criticism that most patients won’t notice any purported “improvements.”
If only 10% of Medicare recipients with early Alzheimer’s use Leqembi, it is projected to cost $56.5 billion annually. Even with the dubious FDA approval, Medicare could have rejected Leqembi as not meeting the standard for Medicare reimbursement of being “reasonable and necessary.” It did not.
Meanwhile, Medicare refuses to pay for a singularly reliable form of Alzheimer’s prevention — hearing aids. A 2017 report by the Lancet Commission on Alzheimer’s Prevention identified hearing loss as one of the top “modifiable” factors for dementia. Last year, a large American study found an almost 50% decrease in the rate of cognitive decline for participants at highest dementia risk — seniors and those with severe chronic diseases — after being fitted with hearing aids.
Since 2010 the U.S. has seen a shocking increase in diabetes-linked lower-limb amputations — up 57% nationally and doubling in New York State. It’s no coincidence that the explosion in these brutal surgeries started right after Medicare responded to an intense corporate lobbying campaign and loosened reimbursement rules for outpatient vein clinics.
Eight hundred of these mainly for-profit clinics popped up across the nation, many funded by “artery clearing” device manufacturers. As detailed in a major New York Times investigation, too many of these clinics perform repeated procedures that cause veins to collapse, almost necessitating amputation.
Atherectomies, the “roto rooter” procedure reimbursed by Medicare at up to $10,000 each, replaced the previous standard of care for “clogged veins” which was anticoagulant medication and life-style changes to improve nutrition and circulation through exercise.
Clearly, the primary aim of Medicaid and Medicare is not to build health: it is to support a vast sickness industry, with the pharmaceutical companies as main beneficiaries.
Medicare does well for routine care, the check-ups and stray pains, and is even quite efficient; its 3% administrative cost is far below the 15% or more for private insurance. But behind this surface efficiency is horror — tethering hundreds of thousands of people to dialysis, doling out $10,000 for unregulated procedures that leave thousands of people without a leg, and squandering billions on marginally therapeutic drugs.
Above all, while advancing our huge sickness industry, CMS has failed to invest in the basic pillars of prevention and health-building in an age of chronic disease. As the IHS model shows, two components are key: accessible physicians and engaging in effective self-care education.
For most people, a primary care physician (PCP) is the doctor that maintains their health. Yet CMS has so blatantly underpaid these frontline doctors for so long that our federal government itself is complicit in destroying American primary care. Younger doctors are not going into primary care, and as older PCPs retire, millions of patients are forced into intermittent care at emergency rooms; this destroys the continuity of care essential to achieving good outcomes for chronically ill patients.
While they under-value primary care, federal insurers are openly hostile to self-care education. Yet self-care education is the vaccine for the age of chronic disease: it empowers and enables people to stay well.
In the years since Health People started as an AIDS peer education program, we have had successful peer self-care and prevention programs for asthma, heart disease, smoking cessation and COVID-19 — all programs that train local people impacted by chronic conditions and AIDS to be peer leaders, teaching others how to stay well.
The self-care strategy that we provide, which has the most impressive results, is the Diabetes Self-Management Program (DSMP) a six-session small group course (developed at Stanford); it is well-evaluated to lower blood sugar, depression, complications, emergency visits, hospitalizations and costs reliably saving $1,000 to $2,000 per participant within the first year.
Despite the consistent improved outcomes using this community-delivered education model, neither Medicare or Medicaid will support Health People or any community groups to deliver education like this to diabetes-overwhelmed communities. CMS “rules” limit funding of self-care education to medical facilities, delivered by designated professionals like certified dieticians — who barely exist in poor urban or rural areas.
This hostility to effective self-care underscores how our systems directly impede better health for the most vulnerable.
In calling health agencies “sock puppets for the industries they are supposed to regulate,” Kennedy is stunningly correct. He deserves considerable credit for launching a vital national conversation that should have occurred 30 years ago.
Still, given his fringe positions, liberal and conservative commentators alike question whether he can focus on practical reforms or even administer HHS.
We don’t know. But it’s been reported that, as a first step, his team is planning major reimbursement reforms to emphasize primary and preventive care for chronic disease and cutting payments for dubious procedures, presumably like the $10,000 roto rooter procedures that have fueled an amputation explosion, hitting hardest at Black men, which is a disgrace to America.
Norwood is founder and executive director of Health People in the Bronx.
