Opinion

Where Is The Patient’s Voice In The Health Reform Debate?

While millions of Americans were in the process of selecting health care last month through open enrollment period at work, the Health Insurance Marketplace, or Medicare plan renewals, the Senate last week passed a measure in a 52-47 vote to repeal the Affordable Care Act (ACA). Despite some hope for the contrary, 2015 will still be remembered in health care as all about the politician, instead of the patient. Now, as we get ready to turn the page, a group of patient advocacy groups are coming together to deliver a new message: 2016 should be the year of the patient.

Last week, I was proud to announce plans to join forces with nine of the leading disease advocacy coalitions in America as Executive Director for Partners for Better Care (PBC), a nonpartisan coalition beginning with over 10 million patients who seek to advance a common goal: Better health care for all Americans.

In speaking to dozens of press, patients and caregivers last week, I heard the same truth underscored time and again. Many stakeholders in the healthcare debate are ubiquitous – providers, insurance companies, hospitals, pharmaceutical companies. But for all the talk of patient-centered medicine, it is still patients who are the most important group left waiting for a seat at the table.

We need to hear the voices of patients and their families. We need to hear from people like the reporter I spoke to last week who turned out to be a caregiver for his adult son who—despite having the knowledge, savvy, and dedication to navigate the health system—was met with tremendous obstacles related to quality, affordability, transparency, and accessibility at every turn.

He represents the reality for most patients and their families, many of whom find it very hard to fight back against situations—some corrected after laborious exceptions and appeals, others caused by unexpected changes in care or coverage, others by bad, out-of-date information – all of which can have dire consequences for patients and their families.

Consider the numbers released by the Commonwealth Fund this past January: Among insured adults in 2014, 20 million had a medical problem and did not visit a doctor or clinic, 12 million did not get needed specialist care, and nearly half of middle class workers skipped healthcare services or fell into financial hardship because of health expenses.

In this environment, patients can’t wait to be heard – they must make themselves heard. That’s the impulse behind Partners for Better Care, a new advocacy campaign powered by some of the most recognizable patient and disease groups in the country.

Joining forces is just a start. All our groups, from AIDS United to United Cerebral Palsy, are united around action. Our first task is the development of a new tool in this debate: A patient charter – key principles that we agree should guide patients’ rights and their experience with modern American healthcare.

The members of Partners for Better Care know that meaningful health system solutions to create patient-centered care means diving deeper beyond any single issue: It means actively advocating for predictable, manageable out-of-pocket costs, and limited cost shifting; transparency of cost and quality information; provider network adequacy; reasonable health system costs; fair and stable formularies and equitable access to therapies; and easy, quick, fair and understandable appeals processes. Those are broad, but critical principles. They require consensus. And they require energy to advocate for.

Improvements in all these areas will result in much needed uptake of necessary care, prevention and treatment, which means better outcomes for people living with diseases and conditions.

For this campaign to work, we recognize that the movement can’t be patients against the world. The next generation of health care reform must be comprehensive and address the policies and cultures of patients, including people living with chronic conditions, providers, insurers and payers. It’s not “us” versus “them.” It’s simply “us.” A patient charter serves to match the power of politicians and industry insiders with the power of a patient story. Together, perhaps the debate on health care reform and health system solutions can take a more productive turn – join us in choosing that direction.

Mary Richards is the executive director of the recently launched Partners for Better Care coalition, which already has over 10 million patient advocates working toward better health care for all Americans.

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