An urgent fight against a killer disease
© Getty Images

Much of the work of Congress is concerned with creating laws and funding priorities that keep Americans safe and allow them to lead healthy and productive lives.  While Congress addresses many of these issues after they are widely known, it is also important for Congress to sound the alarm about a health threat that is targeting millions of people who are unaware of its existence.

This was a lesson I learned from my father, the late Rep. Edward Roybal, whose early career had been as a public health officer. In the early 1980s, long before most Americans, or their doctors, understood much about the growing epidemic of HIV/AIDS, my father recognized that this was a looming public health crisis. So he encouraged, urged, and finally pushed his fellow members of Congress to fund the federal government’s first AIDS research and treatment programs. Today, HIV/AIDS is considered a treatable, chronic disease.


Today, there is another killer disease stalking America. Few of its potential victims know about it, and it is our job to work with the medical community to help stop it.

The killer is nonalcoholic steatohepatitis, known as NASH, which is emerging as one of America's gravest public health issues. NASH is a metabolic disease that, if left untreated, can lead to non-alcoholic cirrhosis, liver failure, liver cancer, the need for a liver transplant and even death. NASH will be the leading cause of liver transplantation in the U.S. by 2020.

The confounding part is that NASH is “silent”; it does not present symptoms until late in the disease’s progression. Most of those with NASH in my 40th District of California and across the country don’t even know they have it. The prevalence of NASH mirrors the rising epidemics of diabetes and obesity, and more than half of diabetics have NASH, as do nearly a third of bariatric surgery patients. In total, 12 percent of U.S. adults have NASH, which equals about 30 million Americans. NASH afflicts an even higher share of our Hispanic neighbors in this country – 19 percent – and young children and teenagers are also at risk.

As the first Mexican American woman elected to Congress and representing a district that is 88 percent Hispanic or Latino, I take this threat especially seriously. And while I also know that big changes don’t come easy, we cannot let that stop us from fighting for those changes. We must work to ensure that Americans know about NASH’s dangers, and that they get tested now so they have a better chance to recover if diagnosed with the disease. We must also encourage those with NASH to adopt significant lifestyle changes in order to manage the disease’s progression as they wait for a cure.

The good news is that there is progress underway. June 12, 2018 marked the first-ever International NASH Day. Medical experts in seven cities across the U.S. joined more than 20 international NASH experts to educate and activate potential patients and other interested stakeholders. The Congressional Hispanic Caucus – co-founded by my father more than 40 years ago – was honored to host experts from across the country for a detailed briefing on Capitol Hill. The session was standing-room only and more events are planned, with the goal of informing Congress about what patients can do to beat this silent killer. I encourage my colleagues to keep learning about nonalcoholic steatohepatitis, and to help all our constituents get accurate information about the broad scope and severe consequences of this ruthless disease.

Today, there is no approved cure for NASH, and the only way to diagnose the disease is an invasive and painful liver biopsy. Researchers do not yet fully understand what causes the disease, and many health providers do not recognize its early warning signs. That is why we need increased funding for public and health professional programs that raise awareness and understanding about NASH. It is why we need to strengthen our nation’s research efforts to identify NASH’s causes and to find potential new treatments. And it is why we need to ensure all Americans have access to comprehensive health care that includes annual wellness exams and does not discriminate against preexisting conditions.

I hope that with increased professional awareness, more aggressive research, and better access to health care for all Americans, we can ensure early diagnoses of NASH and give patients an opportunity to control their disease progression while waiting for approved and effective treatments.

We have a job to do for the American people; let’s get to it.

Roybal-Allard represents California’s 40th District, and is a co-chair of the House Public Health Caucus and a member of the Labor-HHS-Education Appropriations Subcommittee.