Home inFocus Agenda for a New Congress (Winter 2023) Power to the People: Including over Their Health Care

Power to the People: Including over Their Health Care

Katy Talento Winter 2023
(Photo: Flickr/Images Money)

America’s consumer economy puts customers first; our health care system does not. Patients and caregivers navigate restrictive hours, paid parking garages, outpatient procedures at labyrinthine hospital complexes, small print on forms that demand we sign away our financial rights, hoarding of medical records, the impossibility of reaching our doctor by phone, appointment backlogs, the bureaucratic, DMV-like runaround when seeking straight answers to clinical or billing questions and more.

Many Americans just accept that suboptimal health care is here to stay. Thus, we acquiesce to more tests, more procedures, more drugs, and more in-person visits. But is “more” the same as “better?” Or are we prolonging the grueling cycle for sick patients who need answers and relief from their ailments?

And then there’s the crushing, unaffordable, out-of-pocket costs that make everyone think twice before seeking care. Once they do, they live in fear of secret prices, crippling medical bills, and predatory collectors.

A fifth of our economy is devoted to health care. The data show that we’re not getting what we bargained for. Costs dramatically outpace inflation and wage growth. The Institute of Medicine estimates that a third of our health care dollars are wasted on overtreatment or undertreatment, bureaucracy, and fraud.

When the new Congress takes office in January, lawmakers will have an opportunity to shift more power back to patients. Rather than bowing to insurance and hospital elites who see sick people as revenue streams, the 118th Congress could flip the narrative.

Ensure Price Transparency

Significant progress was made in the past few years in exposing secret pricing in health care, but much more needs to be done. The Trump administration pushed forward a series of regulations, including one that directed hospitals to ensure that patients/customers can see in advance what they’re being charged for specific services. The Biden administration, to its credit, embraced the regulation in principle. However, it has been lax in enforcing it. Congress should use its funding power to encourage executive branch action.

Pro-patient price transparency has bipartisan congressional and wide popular support, giving Congress rare political cover to do the right thing by enacting tougher penalties for noncompliance. Only one in five hospitals fully discloses its prices. Even worse, a crucial part of another Trump-era regulation that required insurers to fully divulge prescription drug prices was indefinitely delayed by the Biden administration. The only way to re-align the broken system of incentives in health care is for hidden money games to be exposed so that consumers – patients, their employers, unions, and taxpayers – can start to pay for real value rather than empty promises on billboards featuring hospital or insurance carrier logos.

Make Wellness Pay Off

Tax treatment of health care costs is regressive, complicated, and unfair. Congress should consider legislation that makes every dollar spent on health and wellness tax-deductible for every family. Currently, people who get their insurance on the job have the best tax advantages. People with Health Savings Accounts get some tax deductibility, but only if they have a stingy, high-deductible insurance plan. But people who buy their own insurance, seniors on Medicare, or the uninsured can deduct their spending only if it reaches a certain percentage of their income, a threshold that’s hard to attain in most cases.

This is wildly unfair. A procedural obstacle to legislation fixing this injustice is the Congressional Budget Office’s “score” of tax deductions as “spending” by the government. But Congress should ignore that nonsense – voters know well who is actually doing the spending when it comes to overpriced, essential health care, and it isn’t the IRS.

End Health Care Cartels

For too long, states have let Big Hospitals and Big Insurance freeze out new market players.

Existing hospitals have a stranglehold on state governments and lobby against the introduction of new hospitals that might bring competition and lower prices to their local markets. Congress could condition federal funding on ending so-called Certificate of Need laws that give hospitals veto power over the entrance of competitors to their markets. Congress also must reverse the Affordable Care Act’s counterproductive ban on physician-owned hospitals – the very facilities that are most competitive and least bureaucratic.

Americans have had enough of the status quo business model for financing health care, built on a handful of insurance companies controlling life-and-death decisions for every family. There is more hunger than ever for innovative alternatives that re-align incentives, return power to patients and communities, and restore doctor-patient relationships. Congress could encourage self-funded, multi-state Association Health Plans (AHPs) regulated under the Employee Retirement Income Security Act (ERISA).

Why should only employers be allowed to build the most competitive health plans? Americans must be allowed to organize their own risk-sharing pools and build the health plans they want. Congress should ignore the nannying federal and state bureaucrats who have long cried that only “bad” risk would be left for the government to subsidize if we let Americans make these decisions for themselves. The very definition of a safety net program is to help subsidize only those who are uninsurable, not to force the eminently insurable into government programs that triple their premiums in less than a decade.

Fix Government Plans

Today, the most bloated, expensive health plans are often those offered to federal, state, and local government workers. These plans, which should have the absolute lowest rates because of the size of their risk pools, are being plundered by the health care industry. As if American taxpayers weren’t paying enough for their own health care, they also have to pay for bad deals for public servants.

The federal health care plan that covers nine million workers and their families is one percent of the entire multi-trillion dollar federal budget. Federal workers’ health insurance could easily be slashed 10 percent while improving benefits by using some of the innovations that self-funded employers have been adopting. Congress should direct the Office of Personnel Management to offer plans that use independent administrators, Direct Primary Care, value-based benefit design, price-transparency-driven incentives, and rationalized contracts for prescription drugs. Congress should impose the fiduciary obligations that govern private employer plans on these government plans as well.

Free America – End Mandates

The government is neither our parent nor our doctor; all medical mandates must end. Americans have a right to privacy, autonomy, and most importantly, freedom of conscience and informed consent. Congress needs to protect those rights in every context: workplace, schools, travel, everywhere. Existing nondiscrimination policies should be enforced, and penalties for noncompliance stiffened, to bar employers from charging higher premiums to health care consumers who exercise informed consent when it comes to medical procedures.

Any exercise of public health emergency measures, such as lockdowns, emergency use authorizations of drugs, diagnostics, or devices, building closures, mandates and the rest imposed on the public during a public health emergency should last no longer than three months unless approved by a majority of both houses of Congress.

Congress could tie federal funding to real informed consent on products that receive emergency authorization from the Food and Drug Administration (FDA). This would include the right to sue anyone who administers a medical product without informing consumers of the real risks and benefits. That must also mean that anyone who coerces Americans – without robust informed consent – under threat of loss of livelihood, medical license, educational enrollment, military service, access to health care treatment or organ transplant, or even access to public places could and should be liable for criminal and civil penalties.

Congress must also ensure that doctors retain the long-held (but recently restricted) right to use their training and scientific judgment to prescribe off-label therapies with FDA-approved products if they and their patients choose to do so. Congress should withhold federal dollars from states, localities or even hospitals that fail to protect doctors trying to save patients in a public health emergency.

Re-Engage Doctors

During the COVID-19 crisis, the United States experienced a total breakdown of the public health surveillance system for vaccine-related injuries. The Vaccine Adverse Events Reporting System (VAERS) exploded with exponentially more reported injuries than from any other time period and all other vaccines in history, yet the medical and scientific mainstream simply ignored these reports. This apathy was enabled by the public health authorities’ refusal to engage with the reports, take them seriously, study them honestly, and inform the medical community of their implications for clinical practice.

Doctors may not even have known that their patients were injured or filed a report in the system. Doctors and nurses who did know about a vaccine injury were not required to report it (or, in many hospital systems, were prohibited from doing so). And manufacturers of vaccines, diagnostics, and other products failed to carry out studies of the real-world impact of the products in the market that were a condition of their FDA approval.

Equally important is unwinding dangerous messages sent to the public that, when it submits to the demands of public health authorities ostensibly charged with protecting them, there will be no recourse for them if they are the unlucky ones to be injured as a result. The next Congress should:

Require any doctor or health care provider who has knowledge of a possible adverse event after a vaccine to report it to the VAERS system.

Require the notification of doctors when their patients have an adverse event reported in the system.

Withhold federal funds from any health care facility that attempts to coerce a doctor, nurse, or other provider to ignore, cover up, erase from patient records, or neglect to report vaccine-related adverse events.

Require informed consent documents, package inserts and other communications for Emergency Use Authorization (EUA) products to incorporate the results of real-world VAERS and other publicly available surveillance data.

Require the FDA to immediately pull the authority to market products from any manufacturer who fails to conduct the real-world studies on its products that were a condition of the EUA or FDA approval.

Ensure Scientific Transparency

If we are to restore the public trust that is the foundation of success for any public health policy, Congress needs to take transparency and accountability seriously when it comes to taxpayer-funded research and the data underlying FDA approvals. The circumstances of the pandemic had researchers thinking that data the taxpayers paid to collect, analyze, and publish somehow belonged to them, their institutions, or journals that publish the results, not the public. The FDA actually went to court last year to fight to keep secret for the next 75 years the data it used to evaluate the safety and effectiveness of drugs, vaccines, and diagnostics that the agency unleashed on an unsuspecting public.

Under an EUA, manufacturers are shielded from any legal liability for harms caused by their products, no matter how grievous the injury or how reckless the manufacturer’s behavior. The only way to tip the scales of power back in the right direction is for the public to have full and unfettered access to the data, so that patients can assess the risks and benefits for themselves prior to consenting to using such products. Finally, the advisory committees and other bodies that influence FDA and Centers for Disease Control and Prevention (CDC) decisions must be free from conflicts of interest and undue influence by the industries they regulate. To set things right, Congress should:

Codify into law the Biden executive order that would make taxpayer-funded research data and findings available free to the public, including every bit of data that is submitted to the FDA as part of EUA or FDA approval process.

End the cartel-like stranglehold of overpriced scientific journals keeping research findings paid for by the public behind paywalls that cost thousands of dollars a year. The public must also have access to all raw data collected on the taxpayer dime so that other researchers can replicate or refute published findings or use the data to study other research questions.

Prohibit the appointment of advisors to FDA and CDC advisory committees if they receive or have received funding from any manufacturer of a regulated product or with any product in development that would be subject to the FDA approval process.

End royalty payments to government employees for any inventions that they participated in while on the government payroll.

Prohibit any redactions on government employees’ financial disclosure forms or any Freedom of Information Act request that would delete payments from manufacturers, royalty payments, product or invention associated with the royalty payment.

Congress’ Rx list

The health care industry is the largest activity in the American economy. Congress has a big to-do list to make it fair again for American patients and other purchasers of health care, and to restore trust in the public health enterprise. Fortunately, a growing number of doctors, nurses, patient advocates, and everyday Americans are demanding change. Although many special interests are at work, most people laboring in health care do so with good intentions. They do their duty in a system that’s often demoralizing at best and cravenly corrupt at worst.

We can only pray that the 118th Congress understands the gravity of the moment and fights for the American people rather than the interests of hospital and insurance executives. The groundwork is laid – all Congress needs to do is have the courage to enact meaningful, lasting reforms.

Katy Talento is an epidemiologist and veteran health policy advisor. She served as a health advisor, legislative director, and oversight investigator for many years in the U.S. Senate and was the top health advisor at the White House Domestic Policy Council. She is now the CEO of AllBetter Health.