Drugs that can cure hepatitis C revolutionized care for millions of Americans living with the deadly liver infection. The drugs came with a steep price tag—one that prompted state Medicaid programs to initially limit access to the medications to only the sickest patients. That eased, however, in many states as new drugs were introduced and the prices declined.
But not in Puerto Rico: Medicaid patients in the American territory get no coverage for these drugs.
The joint federal-territory healthcare program for the poor—which covers about half the island’s population—does not pay for hepatitis C medications. They also do not cover liver transplants, a procedure patients need if the virus causes the organ to fail.
The Puerto Rico Department of Health created a separate pilot project in 2015 to provide hepatitis C medications to those sickened by the liver infection who also have HIV, but expanded the program later to those with only hepatitis C. However, according to the Office of Patient Legal Services, an official territorial agency that advocates for consumers, the program ran out of funding and is no longer accepting patients only with hepatitis C.
The Puerto Rico Health Insurance Administration (ASES), which oversees Medicaid, says it is working with a pharmaceutical company to create a cost-effective system to provide these medications.
“Definitely, they need to be given coverage,” ASES director Angela Ávila Marrero says. “They need to be given care.”
The Department of Health did not comment.
Hepatitis C, a bloodborne infection, increases the risk of cirrhosis, liver cancer, and death. Poor screening led many to contract the disease through tainted blood and organ transplants through the early 1990s. Today, intravenous drug use drives most of the new cases in the United States.
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William Ramirez, executive director of the American Civil Liberties Union of Puerto Rico, says he is considering filing suit against Puerto Rico for failing to cover the cost of these medications for people enrolled in Medicaid.
“You’re holding back medication and thereby allowing certain people to die,” Ramirez says.
That reality is clear for Hector Marcano, 62, who stopped working roughly six years ago because of the illness. After recovering from a drug addiction, he was a case manager who worked to connect drug users to health resources.
His liver disease is leading to overall deterioration. He struggles with walking. A bout of pneumonia that left him hospitalized lingers in his racking coughs. He spends his days reading, listening to the radio, and praying for the strength to keep searching for the cure.
He doesn’t understand why the government does not provide hepatitis C medications, he says, especially as there are so many people in need of them.
“So what are we waiting for?” asked Marcano. “For a pandemic to happen?”
Medicaid costs drive island’s debt crisis
Approximately 3.5 million people in the United States have hepatitis C. The virus can silently corrode the liver for years without causing symptoms.
Because of the condition’s stealthy nature and the absence of recent data, the number of people in Puerto Rico living with the virus is uncertain. Researchers on the island in 2010 estimated that 2.3 percent of 21- to 64-year-old residents had the virus.
Documents provided by the Center for Health Law and Policy Innovation of Harvard Law School show medical providers reported more than 11,000 hepatitis C cases to the Puerto Rico Department of Health from 2010 to September 2016.
Cynthia Pérez Cardona, an epidemiology professor at the University of Puerto Rico and an author of multiple studies involving hepatitis C in Puerto Rico, says she is uncertain of how widespread the virus is on the island. But other statistics present a worrisome sign: A report from the island’s cancer registry found the number of new liver cancer cases increased an average of 2.1 percent annually among men and 0.7 percent among women from 1987 to 2014. Hepatitis C can cause such cancers.
Despite these warnings, Puerto Rico has fewer resources than most of the nation to care for its impoverished.
Unlike states, Puerto Rico’s federal funding for Medicaid is capped. Historically, these federal dollars have fallen far short of covering the program’s costs on the island. The territory’s crushing Medicaid expenses helped drive the island into its $70 billion debt crisis.
Under these financial constraints, says Matt Salo, executive director of the National Association of Medicaid Directors, Puerto Rico’s officials are left with a difficult choice when considering covering hepatitis C drugs.
"Rather than blowing through their cap in six months,” Salo says, “they'd blow through their cap in one month."
Pilot project falls short
In the health department’s pilot project, patients with certain conditions like uncontrolled diabetes or an active mental health condition or those who could not prove they had been sober for six months were barred.
Such restrictions rankle patients and their advocates. “You know, we do not deny lung cancer treatment for a person who smokes or diabetes treatment to a person that doesn't eat well,” says Robert Greenwald, a professor at Harvard Law School and faculty director of the Center for Health Law and Policy Innovation.
José Vargas Vidot, a member of Puerto Rico’s Senate and a physician, submitted a petition in 2017 to various territorial agencies questioning Medicaid’s coverage of hepatitis C medications.
The Office of Patient Legal Services responded to Vargas Vidot in a letter this year confirming that the island’s Medicaid program did not cover these drugs. It also noted the health department pilot project closed its wait list after reaching 100 patients because of a lack of funding. In November, Vargas Vidot submitted legislation to require that hepatitis C medication and treatment be part of basic coverage for insurance plans and Medicaid.
Ávila Marrero says ASES is in talks with a drugmaker to create a network separate from the Medicaid program to provide medications to the patients. She is hoping the arrangement would allow the government to get lower prices for the drugs. But no agreements have yet been reached for such a program.
Despite its success in states, suing to get coverage may not be the best option for Puerto Rico because the debt rescue package passed by Congress in 2016 includes a provision that bars creditors from taking legal action to collect from the territory.
That could apply to a lawsuit filed against the territory for not covering hepatitis C treatment in its Medicaid program, says Phillip Escoriaza, a health and federal grants law attorney in Washington, D.C., who practiced in Puerto Rico.
And even if the case can go forward, it would enter the docket for a special bankruptcy court with more than 165,000 other claims, as of January 2. It may be in the Puerto Rican government’s interest for things to take a long time, Escoriaza says. Once there, it could stall for years—time hepatitis C patients such as Marcano might not have.
Kaiser Health News (KHN) is a nonprofit news service covering health issues. It is an editorially independent program of the Kaiser Family Foundation that is not affiliated with Kaiser Permanente.