When Gov. Dannel Malloy first proposed slashing the state’s contribution to a program that helps AIDS patients get antiretroviral drugs, Shawn Lang was panicked.
Lang, director of public policy for the Connecticut AIDS Resource Coalition, feared the loss of that funding–about $600,000 annually–would leave many low-income HIV-positive patients without access to life-saving medications.
But after that bad news came some very good news: Connecticut is finally set to launch a program to help poor AIDS patients cover the cost of their insurance premiums, after a years-long lobbying campaign by Lang and other AIDS advocates.
“This is something we’ve been fighting for for 10 years,” Lang said. “This is a great way to save money and provide people with access to broader health care–not just [HIV] medications.”
The initiative, called the Connecticut Insurance Premium Assistance Program, is being funded with federal dollars that flow to the state through the Ryan White Act. HIV-positive patients who currently get financial assistance buying their antiretroviral drugs will now be able to apply for help paying for health insurance.
“The benefits are huge,” said Christian Andresen, chief of the AIDS & Chronic Diseases Section of Connecticut’s Department of Public Health, which is running the new program jointly with the state Department of Social Services. He said the initiative will increase HIV patients’ access to health services and probably reduce the costs of Connecticut’s AIDS Drug Assistance Program, known as ADAP.
Imagine a hypothetical case, Andresen said, in which an HIV-positive patient can’t afford to buy health insurance through his employer, because the $700 premium is too high. So he turns to DSS, which pays $1,500 a month for his ARV drugs.
“Why don’t we just buy the insurance?” Andresen said. Then the state is spending $700 a month instead of $1,500. The patient is getting their ARVs for a $5 co-pay–along with an array of other health care services.
“Rather than just getting their prescriptions filled, they’re also going to have access to primary care,” Andresen noted.
State officials actually authorized the AIDS insurance program a decade ago, but it’s taken a decade to overcome a raft of bureaucratic stumbling blocks to translate the program from statute into reality.
Other states, including Massachusetts, have long had similar premium-assistance programs to help low-income AIDS patients with their insurance. Many people with HIV/AIDS are uninsured or underinsured, Lang notes, and antiretroviral (ARVs) drugs can be expensive, costing between $12,000 to $15,000 a year.
For those who can afford them, AIDS is a chronic but manageable disease. For those who can’t, it remains a death sentence.
In the early days of the AIDS epidemic, many people with the disease lost their insurance after they became too sick to work. Connecticut initially had a small program to help AIDS patients with their insurance premiums, but it was underfunded and restricted to people who were already seriously ill.
Lang and other AIDS advocates tried to get state legislators to expand eligibility, particularly as ARV drugs transformed the disease from a killer to a chronic condition. They hoped to get the drugs to HIV-positive patients before they were officially diagnosed with full-blown AIDS.
But they made little progress–until a chance encounter at a downtown cafe. One night during a special legislative session, Lang and others spotted a half-dozen Republicans, including then-Gov. John Rowland’s Office of Policy and Management Secretary Marc Ryan, come in for dinner.
“We had been trying for years–and I mean years and years–to get language into” the Department of Social Services implementer bill to let DSS use federal funds for the program, Lang recalled. “But it kept losing out because, we surmised, that Ryan [and others] assumed it would have a fiscal [impact], which was not true. So, we sauntered over to their table, introduced ourselves, and told Mark what we were asking for.”
“I have no problem with that. Here’s my fax number,” Ryan answered, according to Lang’s account.
“Ta da!” she said. It became law.
Fast forward ten years and DSS, working in coordination with advocates and the Department of Public Health, finally launched the program on May 1st. State officials had to, among other things, prove to the federal government that the new program would save money–or at least be cost-neutral.
Andresen said DSS has estimated that as many as half of the 2,000 patients currently enrolled in Connecticut’s AIDS Drug Assistance Program could be eligible for the insurance assistance. And if it reaps significant savings, he said, it could help shield Connecticut’s ADAP program from the financial hardships hitting other state AIDS programs across the country.
“There’s an ADAP crisis in the country right now,” Andresen noted.
Like Connecticut, other states have also cut funding for ADAP programs. They’ve restricted eligibility, trimmed services, and created waiting lists. As of mid-May, 13 states had waiting lists for their AIDS drug assistance programs, ranging from four people in Wyoming to nearly 700 in Louisiana, according to a report by the National Alliance of State and Territorial AIDS Directors.
Connecticut doesn’t have a waiting list. And Lang said the state’s decision to launch the new insurance program now could provide a significant cushion to absorb the blow of the Malloy Administration’s budget cuts, which were adopted by the state legislature as part of the recent budget deal.
The Malloy Administration justified nixing the state’s contribution to ADAP, citing in part the federal funding available through the Ryan White Act. That program emerged unscathed in the 2011 budget deal, but Lang said she’s worried about the next round.
“Ryan White dodged a bullet in the last budget negotiation, but it is vulnerable,” she said, because it’s a discretionary domestic program-i.e., an easy target.
“The majority has made it clear that the funding for just about every social service or program is at risk this year, and Ryan White funding is no exception,” said Rep. Rosa DeLauro, D-3rd District, the top Democrat on the House Appropriations subcommittee that funds health programs.
So even as Lang celebrates a victory on the insurance initiative, she said she’s still worried about what’s to come.
“The funding on both the state and federal level has never kept pace with the epidemic,” she said. “So we’re always trying to play catch up and keep our fragile little safety net from getting completely frayed and falling apart.”