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As the Republican-led health care bill inched through the House and Senate, we heard from commentators across the political spectrum. Sadly, the most important voices — those of patients, the people most directly affected by any new law — have been largely unheard. Patients have the most extensive experience in dealing directly with our complicated health care system and also understand the stark reality of what it means to lose affordable access to health care.

Without elevating the voice of patients and taking their thoughts to heart in forming this law, the country stands to harm individual and collective health outcomes. Their voices, not those of pundits and politicians, should take precedence in any conversation about what the best health plan for the people should look like.

To help understand and amplify those voices, my organization, PatientsLikeMe, organized two national surveys in January 2017 and May 2017. We asked nearly 2,800 patients with chronic conditions, from all 50 states and Washington, D.C., key questions about their thoughts and feelings on the health debate. It was remarkable (but not surprising to a nurse like me of 43 years) that despite the heated rhetoric of this debate, those surveyed were unequivocally united across political and geographic lines as to what should form the basis of a national health care plan.


When presented with 13 provisions that would provide “essential help to the most people,” 95 percent or more of respondents agreed on these seven:

  • Major medical expenses
  • Preventive care
  • Outpatient visits for chronic illnesses
  • Preexisting conditions
  • Some of the costs of prescription medications
  • Mental health conditions
  • Some of the costs of medical equipment

Those surveyed spanned America’s political affiliations. Yet virtually all of them believe that these seven elements are essential to any national health legislation. In other words, they should be made accessible and affordable to every American citizen seeking care.


Any legislation passed by Congress to replace the Affordable Care Act, popularly known as Obamacare, must at the bare minimum account for these basic considerations. To approve a plan that does not guarantee these features would be in willful disregard of the unambiguous desires of patients, the very people at the heart of American health care.

The survey also confirmed something that those determined to dismantle the ACA never mention: the ACA is widely popular. Patients increasingly feel that the law should be tweaked, not replaced. In our May survey, nearly 62 percent of respondents said that the ACA is either working well or needs only minor modifications. That’s a 6 percent increase from the January survey, likely pointing to a growing intolerance with government inaction and ambiguity on health care and a growing realization of what patients stand to lose. In May, less than 23 percent of respondents said the ACA should receive a major overhaul, while just 9 percent believed it should be eliminated entirely, a 2 percent drop from January.

At the same time, public support for the notion that states should be able to opt out of parts of a national health plan is waning. In the May survey, 48 percent of respondents did not support an opt-out option, while 34 percent did. The gap became wider when patients were asked if they would want their state to opt out — only 22 percent supported such a move. Here’s even more perspective: half (50.4 percent) of patients in GOP-held states (defined as those with two Republican senators) disagreed or strongly disagreed that their state should opt out of a national health plan, while 25 agreed with doing that.

What does all this add up to? Simply this: Patients agree that health care is essential. While the GOP has so far struggled (at least outwardly) to build a legislative framework for health care coverage reform that’s acceptable to both chambers of Congress, it’s important to note that a nationwide blueprint for health care that successfully and efficiently meets the needs of patients already exists. It’s known as Medicare. Not coincidentally, Medicare maps neatly onto the top seven coverage priorities of patients.

To be sure, supporting the health and well-being of an entire nation isn’t easy. Somehow, though, virtually all of our peer nations do that successfully — and with better health outcomes and at roughly half the cost. In other words, the idea that we can’t meet the needs of patients is an illusion, if not a fabrication.

The provision of health care in America is part of a social contract, one that assures citizens access to the tools they need to remain as healthy and as well as possible. As our survey confirms, there is no uncertainty on the part of patients about what those tools must be. As lawmakers hash out the particulars of health legislation, they must break through the politics of the debate and look to patients as a guiding voice in order to build a national plan that works for everyone.

Sally Okun is the vice president of advocacy, policy, and patient safety for PatientsLikeMe, an online network through which patients living with chronic conditions can track their health, connect with others, and contribute data for research.

  • Sally, you are absolutely right in that the Patient’s Voice has largely been left out of this healthcare conversation. However, I live in Maine, where Senator Susan Collins is from. The Senate plan didn’t even have the voices of their own party. There were only 13 white men, totally exclusive of other Senator and especially women Senators, who drew up that plan. And the word is that even a smaller group of people, Senator McConnell’s staff and insurance lobbyists wrote the proposal. I am proud of Senator Collins, who did meet with patients, and families here in Maine. I was at one of those meetings, and I expressed my concerns about the attack on Medicaid and how that would affect my mother, who has dementia and requires assisted living. She, almost exclusively, became the Republican Senate’s voice of reason when she refused to go along with the horrible plan that came out. Senator Collins dissent and a few others as well, stopped this insanity in it’s tracks. I am not 100% confident that they won’t find a sneaky way to get exactly what they are after, which is to drop people with pre existing conditions or make it so expensive to get coverage that they will be unable pay. And they are hell bent on attacking Medicaid. The very sick, poor, elderly and disabled, all people who need coverage the most, will be the most affected. Shame on them. We are better than that.

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