Just two years ago Maine was to become the first state in the nation to get a federal waiver to pay for early medical help for about 300 people with HIV who weren’t eligible for Medicaid because of their incomes.

Gov. Angus King announced the waiver in February 2000 saying, “This is tremendous news. I want to compliment the Department of Human Services, which led the effort to secure the waiver …”

He cited research that showed it would be less expensive to pay for preventive medicines to control HIV early than waiting to pay for patients’ full-blown AIDS treatments.

Now, legislators and AIDS activists are saying state officials broke their promise by quietly not funding the state’s portion of the waiver.

“I was absolutely shocked it never got funded,” said Rep. Michael Quint, D-Portland. “When we got the waiver everybody said this is the greatest thing, because we are the first in the country – and then [no one] checked to see if it got funded.”

The man who spearheaded the drive for the pioneering waiver before leaving his job as DHS’ Medicaid chief for the private sector is also disappointed.

“The sad thing about it is some people have died or deteriorated from terminal AIDS because we didn’t get this [in place],” said Francis Finnegan. He said he had worked with experts at Johns Hopkins University, University of California-San Francisco and the University of Maine at Farmington, as well as drug companies and others in creating the program.

It was projected to cost $56 million over five years, one-third of which would have been funded by Maine, he said.

Quint said that after Finnegan’s departure, DHS officials never told anyone about the funding need.

Denis Cranson, executive director of the Eastern Maine AIDS Network in Bangor, said the state put up a wall of silence. He’s not sure why.

“The Medicaid waiver is a program that definitely will – if not save money for the state – be cost-neutral,” Cranson said.

Even with the political uproar, state officials aren’t offering any promises the program will get going anytime soon.

Newall Augur, the new spokesman for the Department of Human Services, said getting it jump-started is all about money now.

“This particular budget session we’re in the position of cutting Medicaid services across the board,” Augur said. “We’re not currently in a fiscal position to be able to fund it – as worthwhile as it is.

“We certainly hope that we will have the money to fund it at some time in the future,” Augur said.

As to why it wasn’t funded last year, Augur said underlying assumptions on drug costs and discounts were out of date, plus the state would have had to come up with $1.2 million for the first year.

Quint said he doesn’t hold Commissioner Kevin Concannon responsible for the “remarkable” failure to fund the waiver. “I just think it fell through the cracks.”

The waiver isn’t on the governor’s funding menu, although the Appropriations Committee is considering this and other HIV-AIDS funding issues.

Finnegan said it took three years to put together the information that led to Maine being granted the first federal Medicaid waiver for AIDS.

He said it was a “Cecil B. DeMille bureaucratic project.” It was a stiff challenge to negotiate with pharmaceutical companies that at the time were taking a hard line on providing discounts to hard-hit areas such as Africa and elsewhere.

A waiver shouldn’t even be necessary because the idea is clinically sound, Finnegan said. He explained that even people who are insured usually aren’t covered for the $12,000 to $20,000 annual expense of anti-retroviral AIDS medications. So the idea was to have Medicaid pay for those expenses even if the patients had a higher income than is typically covered by Medicaid. That would keep people from losing their jobs and falling onto Medicaid in much more serious and expensive conditions, he said.

Finnegan said that even though the program was designed to save money, it would cost money upfront, which presents a challenge in tough financial times.

Last year the number of people living in Maine with AIDS, who were also diagnosed here, was 998, up from 932 the year before, according to the Centers for Disease Control and Prevention in Atlanta. In Maine, about half of those visiting centers such as Eastern Maine AIDS Network were diagnosed elsewhere, Cranson said.

HIV-AIDS isn’t getting the attention it did just five years ago. This stems in part from the development of drugs that keep the disease under control longer. Ten years ago, AIDS patients who were diagnosed with HIV soon required end-of-life care. Today doctors consider them to have a chronic illness.

But advocates say that shouldn’t put people at ease.

“I think we’re in the eye of the storm,” Quint said. “It’s still a chronic illness and a life-threatening illness and there is no cure and the virus continues to mutate.”

Quint believes that anonymous testing and broad educational efforts have been victims of growing ambivalence.

Cranson and other AIDS activists and public health officials say AIDS has dropped from the radar screen in part because there has been a drop in testing. In 1996 there were 4,368 anonymous tests funded by the state, according to Quint and Sen. Jill Goldthwait, an independent from Bar Harbor. In 1999, that fell to 2,233.

Quint said anonymous testing is essential. Consequently he introduced a bill last session to increase funding for prevention and case management by $368,500. Although the proposal passed both houses of the Legislature, it was held over for funding.

Thursday the Appropriations and Financial Affairs Committee voted 8-3 in favor of the measure.

The waiver was discussed briefly, but not voted on, a committee clerk said.

Eastern Maine AIDS Network’s Cranson complains that general education money isn’t available. He added that funding for his programs has remained flat at 1989 levels despite inflation and a 400 percent increase in the number of people being served.