To Fight Surprise Medical Bills, Create a Powerful United Patient Lobby

This article first appeared on It is co-authored with Soleil Shah.

Physicians are taught to prioritize the interests of their patients, using their knowledge, preferences, and values to guide clinical decisions. Political decisions about the U.S. health care system tend to take the reverse perspective: prioritizing the interests of everyone else — pharmaceutical companies, insurers, hospitals, and physicians — above patients.

This backward approach is exemplified this month as hospitals support a new proposal about surprise medical bills introduced by the House Ways and Means Committee. The proposal lets physicians determine the rates of expensive surprise bills through arbitration or negotiation with patients’ insurance companies. That’s bad for patients.

Arbitration is predicted to have little impact on surprise medical bills compared to benchmarked payments. Benchmarking, a more pronounced form of rate setting, was included in a bipartisan bill last December, but that bill died when legislators received dark money donations from private equity firms representing physician staffing companies.

Such industry lobbying threatens Democratic hopes of health care reform, while also leaving patients voiceless. Headstrong Democratic presidential candidates hope to fix this issue through campaign finance reform by reducing or eliminating money from politics. But such proposals will inevitably face enormous political and legal backlash. Furthermore, this strategy ignores the potential for lobbying dollars to empower patients, creating an opportunity for collective advocacy by health care’s most important stakeholder.

A key feature of a participatory democracy is that citizens — especially those without personal connections to government officials — have the opportunity to make their interests heard. Lobbying, in an equitable form, can fulfill that role.

This is why we believe that one approach to fighting surprise bills involves working within the current system and creating a new, powerful, and united patient lobby, one that is unmistakably for the patients and by the patients.

Of course, numerous disease-specific lobbies exist, like the American Heart Association and the American Cancer Society, which lobby on behalf of the diseases they represent. Yet these organizations miss the mark when it comes to a truly patient-centric lobbying group, which should prioritize all patients’ access to high-quality, affordable health care, not just those with a particular disease or condition.

Some lobbies that claim to represent broad patient interests don’t actually prioritize patients’ interests. Take, for example, the Alliance for Patient Access (AfPA), a group “dedicated to ensuring patient access to approved therapies and appropriate clinical care.” In truth, the organization is funded mainly by pharmaceutical companies. This may explain why AfPA has run ads pressuring Congress to oppose value-based purchasing for Medicare Part B drugs and has even published white papers arguing against restrictions on opioid prescribing.

These positions are clearly not in the interests of most patients.

Such conflicts are not an isolated phenomenon: A study in the New England Journal of Medicine found that 83% of the largest patient advocacy organizations received financial support from drug, device, and biotechnology companies. It also found that at least 39% of these organizations have a current or former industry executive on their governing boards.

Beyond conflicts of interest, another problem with existing patient lobbies are their scale. They account for less than 5% of all political spending by health-care-related industries (the pharmaceutical industry alone accounts for 50%).

The lack of a powerful and legitimate patient lobby in the U.S. has had damaging consequences throughout the nation’s history, from keeping drug prices high to allowing the Medicare Part D donut hole and no out-of-pocket maximum for drugs and nixing a proposal that would have addressed surprise medical bills. How would these outcomes have differed if the oppositional checks that legislators received from private equity firms or pharma-backed patient advocacy groups were countered with checks truly written on behalf of patients — the very ones belonging to the constituencies these legislators served? What if lack of action on drug prices or surprise billing could threaten the chance of reelection for a member of Congress?

There are several key requirements for an effective united patient lobby. To remain impartial, it must include people from all sectors: the elderly, those with chronic diseases, the uninsured, young invincibles, and others. It must also include members from each congressional district, so each legislator has skin in the game.

Another consideration is the issues it would represent. Patients may have different ideas of what “good health care” means, such as how we prioritize funding for cancer research or invest in mental health facilities. Some issues, though, are likely non-negotiable for all patients. They do not want to get surprise medical bills or see their wages garnished by hospitals. They do not want to experience discrimination by health insurance companies. They do not want their health information sold without their consent. And they do want to know if their providers have financial conflicts of interests. A united patients’ lobby would advocate against policies that unequivocally harm the interests of patients.

It will take meaningful money to counterbalance industry stakeholders. The challenge is that economic incentives for lobbying by industry stakeholders are far larger than for individual patients. This is where policy change is needed. Hospitals or pharmaceutical companies — which stand to gain financially from industry lobbying efforts — could be required to match every dollar spent on lobbying (or some percentage of it) with donations to the patient lobby.

Federal funding could also be used to finance it — a form of Democracy Dollars at a larger scale. A variation of this approach already occurs in Germany where health insurers, known as sickness funds, are required to offer financial support to patient advocacy groups. Other countries, like the Netherlands, have tried pooling the resources of existing patient lobbies to exert additional political pressure.

Some doctors are saying that enough is enough. Eric Topol, for example, has recently called on doctors to organize to advocate for patient’s interests. We think a better approach is financing patients to organize on behalf of themselves — empowering them to speak out against surprise medical bills and other policies that affect their care.

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