Advocates decry New Jersey changes in AIDS, HIV assistance

Effective Aug. 1, nearly 1,000 New Jersey residents with AIDS and HIV will be dropped from a state program that helps pay for their lifesaving medications.

A measure in the New Jersey budget signed by Gov. Christie last month slashed the annual income permitted for enrollees in the AIDS Drug Assistance Program, saving the state an estimated $7.4 million.

Yet the budget increased appropriations for the program more than 75 percent, to $17.2 million from $9.8 million.

State officials say the changes in funding and eligibility anticipate higher drug costs and an increase in low-income enrollees. But some patient advocates say the figures don't add up.

As they counsel HIV-AIDS clients frantic that they will have to choose between buying the costly drugs and paying other bills - or quit work to qualify under the new income limit - they are scratching their heads: Why provide more money but restrict access to it?

"It's a conundrum that's going to be very difficult, politically, to explain," said Beth Crutsinger-Perry, an associate director of the National Alliance for State and Territorial AIDS Directors.

Each state has an AIDS drug program. New Jersey's combines state money with a federal allocation and rebates from pharmaceutical companies - both of which are expected to increase this year - to cover the cost of drugs that suppress the virus and treat its complications.

Without assistance, the medications can cost HIV and AIDS patients $22,000 a year. Even for those with health insurance, co-pays may total hundreds of dollars a month.

Previously, an individual earning less than $54,150 annually was eligible for state help. As of next month, allowable income will drop to $32,490, disqualifying 967 of the 7,645 people who were enrolled at the end of 2009.

"There really were very few programs and functions that were spared to close that $11 billion" state budget gap, said Susan Walsh, deputy commissioner of the Department of Health and Senior Services. "We are working our hardest to make sure we can serve as many people as possible given our fiscal constraints."

Walsh said New Jersey expected 200 to 300 new enrollees in the program in the next year. She did not provide predictions on cost increases for drugs.

The change to eligibility puts New Jersey's income limit in line with those in 25 other states, according to department spokeswoman Dawn Thomas.

State budget cuts also were a factor in a decision by the AIDS Coalition of Southern New Jersey, in Bellmawr, to close later this month.

For many of the more than 35,000 New Jersey residents living with HIV and AIDS, access to medication can mean life or death.

The drugs used to suppress the disease require "100 percent adherence," said Axel Torres Marrero, senior director of policy for the statewide Hyacinth AIDS Foundation. With intermittent use, people may become resistant to medications. Without medication, their viral load increases, making them more susceptible to illness.

There also is a public health concern. Those in regular treatment are less likely to engage in behavior that could spread the disease, and consistent medication makes them less infectious, experts say.

Cutting people from the program was the last cost-saving measure he would have recommended, Torres Marrero said. Trimming funds for case management or culling from the list of covered drugs would have been preferable, he and others said.

"The governor did not have to do this," Torres Marrero said.

Job losses and the poor economy have put pressure on drug-assistance programs across the country. Between June 2008 and June 2009, enrollment in programs increased about 14 percent nationwide, Crutsinger-Perry said.

At least 23 other states have instituted, or are considering, cost-containment measures such as capping enrollment. Pennsylvania's $30 million in state funding has remained level for five years, an accomplishment one advocate for HIV and AIDS patients in the state attributed to compassionate lawmakers.

State Sen. Joseph Vitale (D., Middlesex) tried to restore the scope of New Jersey's program before the budget was finalized. He was "suspicious" of Christie's motives, he said.

"Why is it that they are disenrolling people?" Vitale said last week. "The money is available." He said he plans to introduce legislation to undo the change.

So far, the governor isn't budging. During a live broadcast on Millennium Radio last week, a caller identified himself as a librarian with a salary of $42,000 who may have to choose between buying the drugs he needs and paying his mortgage. He asked Christie to reconsider.

"No," Christie said. "I mean, there's a lot of people who are confronting a lot of crises out there, and I feel badly for anyone who has got to make some difficult choices. But on the other hand, I have to make difficult choices every day on behalf of the state."

Meanwhile, Lourdez "Cookie" Hernandez, 50, of Trenton, is among those people making decisions about what they can afford.

Hernandez, who works as an AIDS educator in jails, was infected with HIV in 1988 by her husband, who died two years later. With a salary of about $43,000, she was among those who received a disenrollment letter from the state.

Hernandez said she spends as much as $400 a month on co-pays for 11 medications, some to suppress the virus and some to treat side effects - a heart condition, high blood pressure, and high cholesterol.

She could stop working or reduce her hours in order to qualify, but she won't.

"What, my life becomes meaningless because I have AIDS?" she said. "What am I going to do, sit at home? . . . That's not the kind of person I am."

Instead, Hernandez said she would talk to her doctor about eliminating or changing drugs, and she has called pharmaceutical companies to see if she qualifies for their direct-assistance programs.

The staff at Garden State Infectious Disease Associates in Voorhees is going through a similar process with some of its 1,600 HIV and AIDS patients, who learned of the eligibility change with just a few weeks' notice, Dr. David Condoluci said.

New Jersey is "going backward" in its policy and putting people - and state finances - at risk, Condoluci said. The cost of pharmaceutical assistance is far cheaper than the expense of emergency room visits or long hospital stays after a person goes off drugs, he said.

An average hospital stay to treat an AIDS patient who has infections from not taking medications - a process that can take five days or more - may cost tens of thousands of dollars, he said.

President Obama announced a goal last Tuesday of reducing new HIV and AIDS infections by 25 percent within five years. A week prior, U.S. Health and Human Services Secretary Kathleen Sebelius released $25 million to help states with their struggling drug-assistance programs.

So far, the money has been targeted to states with qualified applicants on waiting lists. With fewer people eligible for the program, New Jersey won't have a waiting list, say state officials.