New England states split on hepatitis C Medicaid restrictions

Editor's note: This is part II of a project on hepatitis C in New England.

A cure for hepatitis C is widely available. And yet, hundreds of New Englanders are still dying every year from related causes. Experts call the country's response to the deadly bloodborne disease a "posterchild for health care disparities."

Tracking by the Center for Health Law and Policy Innovation at Harvard Law School and National Viral Hepatitis Roundtable shows that Medicaid restrictions for hepatitis C treatment remain across much of the country today.

Seventy-three percent of states currently require prior authorization before Medicaid beneficiaries can access treatment, and 36% still put restrictions in place for those actively using drugs, despite drug users being at disproportionate risk for contracting the virus, according to the 2022 State of Hep C Report.

The federal Centers for Medicare and Medicaid Services has previously told states that some of those restrictions violate federal law, and yet they persist. CMS has not released any updated guidance for states since 2015.

Dr. Arthur Kim, director of the Viral Hepatitis Clinic in the Division of Infectious Diseases at Massachusetts General Hospital, said populations that acquire and live with hepatitis C are more likely to be on Medicaid than private insurance, making Medicaid a good barometer of how the country as a whole is making progress, or not, against the virus.

Treatment roadblocks in state Medicaid programs pose extremely large barriers to eliminating hepatitis C completely, experts say, because the lion's share of those infected have insurance through them.

Hepatitis C treatment restrictions in New England Medicaid programs

In New England, the region is split. Massachusetts, Rhode Island and New Hampshire have since lifted nearly all Medicaid restrictions, while Vermont, Maine and Connecticut maintain prior authorization requirements and other various stipulations.

It's too soon to tell if lifting some of the major restrictions will increase the number of people taking direct-acting antivirals in New England, though other studies have found that hepatitis C treatment improves with such policy changes. Massachusetts and New Hampshire, for example, just lifted prior authorization in 2022, and Rhode Island in 2021.

New England as a region has made progress in recent years on the Medicaid front, perhaps more so than other areas of the U.S., but it hasn't always been that way. Kim said despite being a "fairly liberal place compared to the rest of the country," for a long time, New England states saw hepatitis C as "something not to treat widely because of the cost."

"Many payers were not willing to pay for everyone they were covering all at once," said Kim. "They saw very large dollar signs and said, 'We need to restrict this....' It really limited the impact of these highly promising agents."

"Hepatitis C: State of Medicaid Access," a tracking effort by the Center for Health Law and Policy Innovation of Harvard Law School and National Viral Hepatitis Roundtable, shows how New England's approach has changed over the last five years. In 2017, Maine, New Hampshire and Rhode Island all had substance use and sobriety restrictions in place, for example. In Maine, someone had to be six months sober before becoming eligible for treatment, while New Hampshire and Rhode Island required someone undergo substance use screening and counseling.

All of New England has since eliminated Medicaid restrictions for substance users.

Vermont and Rhode Island once both reserved Medicaid coverage of hepatitis C treatment only for people with F2 and F3 stages of fibrosis, respectively, designations that signal severity of liver scarring. Both states dropped those restrictions by 2018.

Kim said states started to see a drop in numbers on their liver transplant lists as Medicaid restrictions were shelved.

Suzanne Davies, clinical fellow at the Center for Health Law and Policy Innovation, said a "huge improvement" in New England is the recent removal of prior authorization in Massachusetts (2022), Rhode Island (2021) and New Hampshire (2022). That administrative process, she said, can be a significant barrier to tapping into direct-acting antivirals.

"Now in those states, it's as simple as the doctor prescribing whatever the medication is and the person going to the pharmacy," said Davies. "But because it's such a recent change, one thing I've heard many times from providers and advocates is it's not enough to just remove a restriction. In the wake of a state Medicaid program making a really big change to their program, it's important they make sure all of the providers are aware of the change and what they should be doing now."

And yet, noted Davies, there's still another layer of complication. Many state Medicaid programs contract with managed care organizations, which each have their own set of requirements. While prior authorization has been dropped in Massachusetts and New Hampshire, she said, not all of the states' managed care organizations have made the change themselves.

Dr. Lynn Taylor, a Rhode Island expert in hepatitis C prevention and treatment and director of the RI Defeats Hepatitis C program, pointed to what she perceives as "administrative waste" associated with hepatitis C treatment restrictions.

"How much time do we spend on these bureaucratic tasks rather than the patients?" she said. "We have to simplify and streamline the pathway. We have a very arduous pathway. We put people through a lot."

How well are New England states treating hepatitis C patients on Medicaid?

The USA TODAY Network submitted information requests to each New England state Medicaid program to track direct-acting antiviral treatment for hepatitis C patients over the last five years.

The data provided reflected a national problem with gathering uniform numbers on hepatitis C.

An October report released by HepVu and the National Alliance of State and Territorial AIDS Directors found that one-third of U.S. jurisdictions in 2021 did not have a full-time viral hepatitis surveillance employee, and only 55% of jurisdictions could produce an annual surveillance summary.

In New England, state Medicaid programs offered different definitions of treatment, for example. Some provided numbers of prescriptions per year, while others provided the number of unique individuals treated per year. Some states struggled to calculate the total number of Medicaid beneficiaries with a hepatitis C diagnosis.

In its response, MassHealth − Massachusetts' Medicaid program − noted the data doesn't necessarily reflect someone being cured of hepatitis C, but rather simply their use of direct-acting antivirals. "Some members may require longer treatment durations, and completing a course of therapy does not indicate a clinical cure (which

needs to be confirmed via lab tests)," the state's response said.

Comparing the states' treatment rates proved difficult, but the USA TODAY Network was able to identify overall trends in each state between 2017-2021. While the number of Medicaid beneficiaries in New England with a hepatitis C diagnosis has declined, data shows, so has the rate at which states have been treating people.

Generally speaking, New England states saw their biggest treating years in 2017, 2018 and 2019, but nearly all have fallen off since. According to the American Association of the Study of Liver Disease, the nation saw an overall decline in the number of patients with hepatitis C who initiated treatment between 2015 and 2020.

Massachusetts, for example, went from treating 3,763 hepatitis C patients in 2017 to 1,708 in 2021. Connecticut went from treating 1,588 patients in 2018 to treating 726 in 2021.

Though 2022 isn't finalized, preliminary data shows Massachusetts, Rhode Island and Connecticut are all on track to treat the fewest number of patients in six years.

"Our team thinks we may be seeing a combination of incomplete 2022 data, claims submission lag and the need for patients to catch up on many areas of routine medical care that may have lapsed during the pandemic," said Kerri White, spokeswoman for Rhode Island Medicaid. "We are ramping up our (2023-2027) Hepatitis Elimination Plan. The next step of our plan is direct conversations with providers, to remind them of who to test and how to test. We also will be offering presentations to hospitals, group practices and medical staff meetings, as well as print materials for providers and patients."

New Hampshire and Vermont saw the least fluctuation in the number of people treated each year since 2017. And Maine actually saw a large increase that proved steady through COVID, despite still having several Medicaid coverage restrictions in place such as prior authorization, required consultation with a specialist and prohibition of retreatment if someone is infected more than once.

In 2017 and 2018, Maine was treating 205 and 234 people per year, respectively, and in 2019, jumped to treating 495 people. The state has since consistently treated more than 450 people each year.

That's because 2019 was the year Maine expanded Medicaid, the last state in New England to do so.

Jackie Farwell, spokesperson for MaineCare, the state's Medicaid program, said, "Many MaineCare members who enrolled early on through the expansion had multiple chronic conditions, including hepatitis C, and were able to access treatment with their coverage."

In 2020, Maine also saw the nation's highest new hepatitis C case rate, according to the CDC.

CDC data from 2016 to 2020 shows people with hepatitis C living in Vermont and Rhode Island are dying at higher rates than the rest of New England. During 2017-2019, Rhode Island consistently saw the highest death rate in the region, while Vermont had the highest in 2020.