Top McKee aide lobbies as private citizen for coverage of HIV prevention, treatment drugs

PROVIDENCE – A top aide to Gov. Dan McKee stepped outside his usual State House role on Tuesday night to personally make the case to a legislative committee for a bill to require insurance coverage for pre-exposure (PrEP) and post-exposure (PEP) medications to prevent HIV infection.

Appearing as a private citizen before the House Health & Human Services Committee, Matt Sheaff, 38, a communications adviser to the governor, told lawmakers:

"Since the AIDS crisis emerged in the '80s, LGBTQ-plus individuals have lived in fear that HIV could be a death sentence if they received a diagnosis. I, in fact, remember when I came out being asked, aren't you worried about getting HIV?

"Science and medicine has come a long way since 2009," he said, "and now because of medications like PrEP and PEP, we have our strongest tools available in the fight to prevent and eradicate HIV.

"PrEP, for those of you who don't know, is a daily pill that reduces the risk of getting HIV by 99% when taken as recommended," said Sheaff, quoting the federal Centers for Disease Control and Prevention.

"Yes," he said, when asked, "I have taken PrEP as a step to stay healthy. I remember the first time I received a prescription ... when it was a newer medicine. My insurance company did not cover it and it was over $1,000 a month."

He said his doctor pointed him to a way to reduce that cost through coupons from the manufacturer. "Now that there is a generic version of the medication, costs have come down and more insurance companies have covered the medicine – but this isn’t equal across the board."

Sheaff's comments were reinforced by Dr. Philip Chan, consultant medical director of the Department of Health, a physician in the Infectious Diseases and Immunology Center at The Miriam Hospital in Providence and an expert in the research and treatment of HIV, and by Amy Nunn, executive director of the RI Public Health Institute, which operates Open Door Health, the state's only LGBTQ+ clinic.

Their arguments were countered by lobbyists for Blue Cross & Blue Shield and the Washington, D.C.-based American Health Insurance Plans, who tried to dissuade lawmakers from adding a mandate that could – and likely would – increase premiums for "Rhode Island's businesses, taxpayers and families."

Their testimony centered on H 5744, a bill to require that every health insurance carrier doing business in Rhode Island provide coverage of pre-exposure prophylaxis (PrEP) for the prevention of HIV and post-exposure prophylaxis (PEP) to prevent HIV infection, starting Jan. 1, 2024. The lead sponsor was Rep. David Morales.

A second bill – H 6150 – would do much the same, and also allow pharmacists to prescribe, dispense and administer HIV prevention drugs. The lead sponsor is Rep. Brandon Potter.

In his written testimony, Blue Cross & Blue Shield lobbyist Richard Glucksman told the lawmakers that pre-exposure preventive medication is already covered by his company, with no cost-sharing.

"Members also have access to post-exposure preventive medication, without utilization management requirements, and current drugs are either generic or 'preferred brands,' meaning they are on the lower cost-sharing tiers, generally $10 to $30," he said.

But Nunn said "we take care of nearly a thousand people who take PrEP. And the reason that we're so supportive of this bill is that ... patients can experience exorbitant co-payments and deductibles and lab costs.

"We actually led a research study among 60,000 people that was published last year in an HIV journal. And we found that the people who don't persist on PrEP, who stop taking it because of copayments, have six times the rates of HIV infection of people who continue to take PrEp."

"We have terrific health insurance coverage rates in this state ... but we have a lot of people who are underinsured and who experience a lot of out-of-pocket costs that can undermine their access," she said, citing "anecdotally" what happened to "two of our patients ... two young men who are under age 25."

"While they were waiting for their approval [from] their insurance companies, [they] actually contracted HIV."

AHIP's local lobbyist, Terrance Martiesian, put some numbers around his argument that the "out-of-control prices for Truvada – and innumerable other prescription drugs – are a direct consequence of drugmakers taking advantage of a broken market for their own financial gain at the expense of patients."

He said a 2020 analysis on the price of PrEP drugs found that the cost of a month's supply of 30 tablets rose from $1,350 to $1,638 between 2014 and 2018; insurers cover 94.3% of PrEP medication costs ($1,544 per 30 tablets).

He said total payments for PrEP totaled $2.08 billion in 2018.

The heart of his argument: "Benefit mandates eliminate the ability of health insurance providers and HMOs to develop innovative and competitive benefit packages and force employers and individuals to purchase a prescribed set of benefits driven by the General Assembly rather than consumer choice."

This article originally appeared on The Providence Journal: Top McKee aide lobbies as private citizen for coverage of HIV prevention, treatment drugs