Looking for funding to save a lifesaving program

Effort to stem AIDS at risk

By Emily Sweeney, Globe Staff, 8/28/2003

As the state reports that the number of HIV/AIDS cases among young people is growing, Nancy Morse finds herself once again trying to save an AIDS prevention program at the MetroWest Latin American Center in Framingham.

The program, Teens Talking About Preventing AIDS, nearly died when its state funding was cut in January 2002. Morse was able to find private funding for the program, which for the past nine years has trained 10 peer leaders annually to give presentations at schools and local organizations on HIV/AIDS prevention. But this year she is scrambling to save the program that was designed to save lives.

"The AIDS epidemic is rising in young folks, especially in the minority community," said Morse, executive director of the MetroWest Latin American Center. She added that the Teens Talking About Preventing AIDS program's purpose "is twofold -- it trains peers, it keeps them safe, and empowers them to become leaders in the community. Now I'm looking for funding to keep it going."

As the center stands to lose one of its most important programs, the state Department of Public Health reports that the number of HIV/AIDS cases among people 13 to 24 years old has grown "significantly" since the state first started tracking HIV in 1999.

In 2002, adolescents and young adults represented 8.7 percent of all HIV reports, up from 6.1 percent in 1999, according to the department's statistics.

In total, Massachusetts has had 17,998 residents diagnosed with AIDS, and 60 percent of them have died, according to state statistics. The department has estimated that up to 21,000 residents are living with HIV/AIDS, and about one-quarter of them do not know they are infected.

State and federal funding for the Department of Public Health's HIV/AIDS Bureau steadily increased from 1991 to 2001, but funding has declined by about $1 million since, according to state figures.

Durrell Fox, project director for the New England HIV Education Consortium, said a statewide program called Protect Teen Health, which provided peer educators in communities throughout the state, was cut in December 2001. That program was key, he said, because it served suburban communities, which are not immune to HIV/AIDS.

"If you look at teens with HIV, there are more youth living with HIV who are under 25 than ever before," Fox said. "They're living longer and [displaying] the same behavior as other teens. Urban families are moving to the suburbs. The same populations we've tried to work with are in some suburban school systems. And those wonderful suburban teens are into and influenced by the same cultures in urban areas. They're running into the same pressures. The reduction in prevention education means less people at the middle and high school levels are getting baseline information to protect themselves."

Fox said the massive media campaigns that started in the 1980s have faded because of complacency and lack of funding.

"After 20 years of information smacked in your face, you say the heck with it. People are tuning folks out, and there are more and more reductions in HIV and substance abuse programs," said Fox. "We're taking steps backward in Massachusetts."

Since the late 1990s, more resources have focused on high-risk groups, rather than broad-based public information campaigns, according to Jean Flatley McGuire, director of the Massachusetts HIV/AIDS Bureau. "There's nothing harder to measure than a service you no longer provide," McGuire said. "Is there someone there who needed prevention [help] and didn't get it?"

"The Framingham area has seen a rise in HIV/AIDS over the last five to 10 years. There has been expansion out from the epicenters, the major urban centers," said McGuire. "We're really trying to take that into account even during this time of reduced resources."

According to McGuire, the Metrowest area accounts for 12 percent of those living with HIV/AIDS in Massachusetts.

Steve, 47, lives in Waltham. He was diagnosed with HIV in 1992. "The epidemic has changed. In the late 80s and 90s, people died within year or two. Now people are living for years," said Steve, who asked that his last name not be used.

Years ago bowls of condoms were placed everywhere at gay bars, he said, but now he doesn't see them as often. He added that there seem to be few programs for people living with HIV outside of urban centers.

"I think people assume the information is out there and then they have been surprised that it's not. I don't think [HIV/AIDS education] information gets out into the small towns," Steve said. "Another factor we need to look at in the Metrowest area is the assumption that infections happen only in the city. The assumption that everyone does everything in the city is just wrong.

"There is a high concentration of infection in the Boston/Cambridge area. But I think that the reality is that people can't afford to live [in the Boston/Cambridge area] anymore. I think you're seeing more [infections] in towns in Metrowest, and I think that's going to be a trend that's going to expand," Steve said. "The AIDS bureau has been devastated by budget cuts, which makes responding to any changes more difficult."

This year, Governor Mitt Romney proposed $38.5 million for the state's HIV/AIDS Bureau; the House and Senate conference committee ended up funding it with $32 million, according to Roseanne Pawelec, spokeswoman for the Department of Public Health. "The Legislature's budget was $3.7 million less that what the governor had proposed for the AIDS bureau," she said.

Some local health directors acknowledge that HIV/AIDS prevention measures have dropped off in recent years. "I would say it has waned, with other diseases coming up, and budget cuts impacting programs. [AIDS] was on our radar screens more years ago -- more than it is than now," said Watertown public health director Steven J. Ward. "At the local board of health level we haven't done anything with HIV or AIDS."

Jean Masciarelli, director of the Visiting Nurse Association of Greater Milford, said her organization focuses "more on the run-of-the-mill kinds of things," rather than AIDS prevention. "We would design our education programs based on what we see in the community. We have some [AIDS] literature. We haven't had any requests for it," she said.

Marlborough Hospital has no HIV/AIDS prevention programs, according to Maryann Robbins, a hospital spokeswoman.

"We don't do a whole lot of AIDS awareness work," said Richard E. Weschrob III, health agent for Franklin. "But we never rule out doing something in the future."

Janice Berns, health director for Needham, said she was aware of the recent statistics, and that the town has an AIDS Advisory Council. Most AIDS education is done in the classrooms, she said.

"We don't have a lot of money available for speakers and programs," said Berns.

Ninety percent of high schools across the state have health awareness programs, and almost all those programs include AIDS prevention, according to the state Department of Education, which lost funding for its AIDS program. AIDS curriculums vary from school to school.

"There is not a state curriculum for AIDS education," said department spokeswoman Kimberly Beck.

George W. Johnson, assistant superintendent of schools in Needham, said the school system had not revamped its AIDS curriculum for 10 years. But now, armed with a grant from the MetroWest Health Foundation, school officials will revisit AIDS prevention strategies, which are typically integrated into several subject areas, including health courses.

"It's something we brought up again this year to take a fresh look at it," said Johnson. "One thing we found is that we've gotten lax about some things being taught when they're supposed to be taught. For example, one of the things we want is people who are HIV positive or have AIDS to speak to the kids. We hadn't done that in a year or two."

"It's really something that needs constant attention or it doesn't stay on the front burner for a school system," he said.

Emily Sweeney can be reached at esweeney@globe.com.