The California HIV/AIDS Advocacy Network Grassroots Evolution is sponsoring the “SPEAK OUT for CHAANGE” Community Forum at the Normal Heights Community Center on Wednesday, Nov. 19. The event, originally scheduled for Oct. 29 but rescheduled due to the San Diego wildfires, allows members of the HIV/AIDS community to publicly address their needs, some of which have not been served so far by state or local agencies.

“CHAANGE is an organization that does lobbying and advocacy for people living with HIV/AIDS,” said Carolina Ramos, executive director of Bienestar and board member of the San Diego chapter of CHAANGE. “We’re doing a community public forum so we can find out what the consumers need. This way, when we are talking about what bills and what things we’re lobbying for, we can make sure that we’re representing the people that we say we are.”

CHAANGE is a statewide group with chapters throughout California and advocates at both the state and local levels of government. They went to Sacramento in April of this year to lobby for more funds to be allotted to AIDS prevention programs, as well as to keep the AIDS Drugs Assistance Program, and reinstate the $10 million previously allotted to it.

“ADAP is important,” said Mike Lochner, a San Diego CHAANGE board member. “If you’re on eight medications, and you’re paying a $15, $20, $25 co-pay for each medication and you’re on a strict income, you’re forced to choose between getting your meds, or eating, or keeping a roof over your head. Most people would say, ‘skip the meds and let’s keep the roof and food on our table.’”

The San Diego chapter of CHAANGE was started in 2002. The forum came about at a board meeting of the San Diego chapter of CHAANGE when they were planning their fall reception; a suggestion was made to open up the floor to the community members present, to ask the board anything they wanted.

Board members decided to hold a forum before the fall reception, where CHAANGE can hear directly from members of the HIV/AIDS community what their needs are, since many individuals — particularly those who are newly diagnosed — are unsure of what they can ask for and are intimidated by bureaucratic procedures. CHAANGE will then speak for them at state and local levels of government, and lobby to ensure that they are receiving quality care.

“For a lot of people who are newly diagnosed, when they first hear that they are positive, that is like hitting a brick wall,” said Lochner. “You kind of go numb for a while.… We hope that these forums will bring people out and that they will tell us what they want us to be advocating for on their behalf.”

CHAANGE tries to let the system know that people living with HIV/AIDS have needs that extend beyond medical prescriptions. Other aspects, such as language barriers, childcare and cultural issues, as well as greater ethnic diversity in physician choices, need to be addressed.

“There is a targeted population that is always left out because they cannot go lobby in Sacramento — that is the immigrant population,” explained Ramos. “We need to make sure [we address] the issues they are facing that are different from the issues that other people living with HIV/AIDS are. For example, if they are deported and they are at the detention center, are they getting their medication? No, they’re not.”

Advocacy for equal treatment in both INS and federal detention centers is just one of many needs board members suspect go unnoticed in the San Diego community.

CHAANGE is also hoping to hear about the needs of women and mothers in the HIV/AIDS community; they anticipate a need for more childcare options as well as requests for more female physicians. “There are not a lot of women that have the time to speak out for themselves,” said Lochner.

Many HIV/AIDS consumers are not aware of their options for medications, or the option of participating in medical trials. Lochner explained that many of the drug trials are only conducted on male subjects, and women of childbearing age have concerns about the side effects of the drugs, both affecting their bodies and inhibiting their ability to care for their children.

Other issues revolve around the many cultural groups in San Diego, all of whom are affected by HIV/AIDS. “We have mono-lingual Spanish, [and] there is a need for [services directed towards] Asian Pacific Islanders and Native Americans,” said Lochner. “For some reason they seem to be ignored by the county when it comes to funding. Why aren’t those communities getting funding to keep their [HIV/AIDS case] numbers low, instead of being told by the county that until they have the numbers, there isn’t really a need [for funding]?”

CHAANGE is planning to hold a membership meeting and reception by the end of this year, before they lobby in Sacramento in 2004.

“If one person is infected with HIV/AIDS in San Diego County, then there is a need for services,” said Lochner. “Something that I want the HIV/AIDS community to realize is that the people on this board are really committed to advocating on their behalf. We just need to know what they want us to deal with.”

For more information about the San Diego chapter of CHAANGE, call (619) 295-2192. The Normal Heights Community Center is located at 4649 Hawley Blvd.