September 27, 2018

They may be the two most forgotten words in the debate about the Affordable Care Act. “Patient protection” is the term that actually begins the official name of the landmark law, often called Obamacare.

The law remains in the crosshairs of partisan efforts to repeal it. This month Columbus and three other U.S. cities filed suit against the Trump administration, alleging harm to residents and taxpayers from reduced coverage and “sabotage” to the law.

Even life-saving protections for patient safety that the Affordable Care Act embedded in our health-care system are not immune from drives to remove them. This month, a network of disease survivors and public-health advocates that unites Republicans, Democrats and independents prevailed in an important battle with the administration about the law. Our win shows that patient-safety advocates are growing in grassroots strength and political savvy.

On Aug. 2, Seema Verma, head of the Center for Medicare and Medicaid Services, did a public about-face on plans announced in the spring to take away some federal requirements involving quality of care. Her reversal reaffirms rules on injury disclosure and hospital accountability and adds them to Affordable Care Act regulations.

Verma’s final rule preserves the requirement to report Clostridium difficile infections.

C. diff. bacteria strike the intestines, often prompted by ordinary antibiotics that nix gut bacteria that would neutralize C. diff. The infection causes bloating, fever and painful diarrhea. Its symptoms too frequently go undiagnosed. Without proper treatment, it can kill an infected person in less than a week.

First identified in 1978, C. diff. has grown into an epidemic that the Centers for Disease Control and Prevention in 2013 characterized as an urgent threat to public health. Common means of transmission are spores in food or on hospital surfaces like bed rails left unsterilized by chlorine bleach solutions or other approved cleaning techniques. It now kills more than 29,000 Americans each year. Half a million people get sick each year, some with long-term gastrointestinal damage.

Taxpayer costs from C. diff. surpass $8 billion each year, with much more coming out of individual pockets for managing chronic conditions. The Affordable Care Act started to turn the tables on this infection and other lethal culprits transmitted heavily in hospitals and nursing homes.

The law achieves a longstanding goal of taxpayer accountability by tying health-care facilities’ reimbursements from Medicare and Medicaid to sharing truthful data about the prevalence and severity of injuries that patients suffer. This fiscal responsibility is a facet of the law that critics rarely acknowledge.

Her reversal notwithstanding, earlier comments by Verma have triggered deep concern, by speaking of undoing this taxpayer accountability component and talking down the law. At one point last month she said, “It wasn’t working when we came into office, and it continues not to work. The program is not designed to be successful.”

But for many patient-safety advocates, the law’s success is plain. It’s visible in clear information accessible at our fingertips on the Hospital Compare and Nursing Home Compare websites. Managed by CMS, these portals allow consumers to evaluate treatment venues based not on hearsay or Yelp reviews, but on facts about quality of care. The law also created incentives for facilities to adopt prevention measures. These include in-service workshops featuring information from C. diff. survivors like me. Doctors, nurses and administrators often report that what they learn in these sessions will help them save lives, not to mention dollars.

Despite the win on rule-making, my work for patient safety is far from finished. The Affordable Care Act is still under siege, putting its patient-safety reporting mandates at continued risk. The Nursing Home Compare site, for all its value, excludes data about C. diff. Since 2006, the state of Ohio has not reported to the public even deadly cases of C. diff. at nursing homes. More than 30 states do not count C. diff., and only Illinois mandates that death certificates cite the disease.

In solving these problems, there is no substitute for humane public policy or public service, faithful to the spirit of that law. Now a bipartisan network of patient-safety advocates is taking the fate of the Affordable Care Act personally and showing that vigilance pays off in stronger accountability.

Anne Fox survived a recurring infection from Clostridium difficile bacteria in 2013 and ’14. She lives in Upper Arlington and is an advocate for patient safety with the Peggy Lillis Foundation, which promotes awareness and public policies to end the C. diff. epidemic.

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