Almost 20 years after first declaring a local state of emergency due to the AIDS epidemic, the City of Oakland continues to be struggle to get the disease under control.
More than half of all HIV cases in Alameda County are diagnosed in Oakland, according to Dr. Neena Murgai, Deputy Director of Epidemiology and Surveillance for Alameda County, who tracks HIV & AIDS in the county.
“The epidemic is most concentrated in the Oakland and Oakland area.,” she said. “As we know from a lot of the other data, Oakland area is the area of greatest burden of several health conditions that are associated with higher concentrations of poverty and other social conditions.”
In the early years of the epidemic, before a test for HIV infection was available, California required all county health departments to track AIDS cases – individuals who had developed AIDS because of their underlying HIV infection. When a test for HIV infection was developed, cases of HIV infection without AIDS began to be reported to the health department as well, using coding system rather than names.
Since effective medications became available, many people are able to live for years, even decades while infected with HIV. It is the Acquired Immune Deficiency Syndrome (AIDS), and its related infections and vulnerabilities that cause death. In 2006, the state started to require confidential tracking of both AIDS cases and new HIV infections with names.
These two numbers – who’s infected with HIV and who’s progressed to ‘full-blown’ AIDS — can show the health of individuals and the ways that community members are or are not accessing health resources.
Carla Dillard agrees with this neighborhood approach to HIV/AIDS data. Dillard has worked in prevention, treatment, and research for over a decade, first at Cal-Pep (California Prostitute Education Project) and now at Pangaea Global AIDS Foundation. “Zip code plays a role in risk. It’s not just what you do, but it’s also where you live.”
Local advocates and activists have consistently challenged city, county and state officials to address the realities of day to day life for Oakland residents. At a recent community event hosted by W.O.R.L.D. (Women Organized to Respond to Life-threatening Disease), one attendee lamented “Alameda County wants to do things from the offices, but people are dying in the streets. We have to go where the people are dying.”
These kinds of comments refer to both prevention and treatment efforts. Former Mayor Ron Dellums earmarked funds for Get Screened Oakland, a public-private partnership that used billboard ads, community events, a website and toll free number to increase the number of Oakland residents participating in routine HIV screening. The program helped raise awareness about HIV testing and prevention.
But the website has grown outdated in recent months. Get Screened Oakland leadership have all moved on to other projects. The toll free number, still featured on the site, is now disconnected even as VaShone Huff, Deputy Director of Intergovernmental Affairs at City of Oakland, says, “The program is still alive and thriving.”
In Oakland, as in many parts of the country, overall new HIV infections have leveled off or are going down. However, in certain neighborhoods and demographics, new HIV infections in Oakland are going up. African-Americans, in general, continue to show increasing rates of infection – at 5 times the rate of Whites and Latinos. African-American women also continue to have high infection rates. More and more African-American men who have sex with men are also getting HIV. Young African-Americans, in their teens and twenties and thirties, are another group who’s numbers are not level or going down, but going up.
There are more agencies offering HIV tests in Oakland than other cities in the county. Yet Dillard cautions that, across the board, many people living with HIV are not getting tested.
“All the national data says that 25% of the people who are positive don’t know it. We’re not reaching all the positive people.”
Not knowing HIV status affects both prevention and treatment. Oaklanders who have HIV and don’t know it can unintentionally pass on the virus. They also can’t access life-saving treatments – because they don’t know that they need them. Several local health care providers have made a commitment to focus in on the communities where HIV rates are going up, especially young, African-American men who have sex with men.
Sally Slome has been an Infectious Diseases and HIV specialist at the Kaiser Oakland Medical Center since 1998. “I think what has motivated me to try and find out what’s going on is that we’re seeing so many new diagnoses among really young people at Kaiser. We do a really good job at caring for patients who have HIV, but not at preventing HIV.”
She continues, “We’re starting a young men’s support group, and we’ve had eleven or twelve young men to show up just in the past 6 months. They’re 18 to 30 years old. They don’t have a primary care doctor and so, their doctor isn’t offering them testing.”
A fund established by Kaiser Permanente at the East Bay Community Foundation has just awarded several local organizations funding to support AIDS education, prevention, testing and connections to care. Cal-Pep, the HIV Education and Prevention Project of Alameda County, Lifelong Medical Care, Tri-City Health Center, and W.O.R.L.D will each receive a $75,000 one-year grant.
“Community organizations are on the ground working, and all these new diagnosis are being made. I’ve been trying to see what’s going on. When you look at those numbers, how can you not do something?” says Slome.
Maurice Graham has gone into schools and churches to spread his message of hope in Oakland and overseas. “I’ve been living with HIV since 1983, since I was 21 and now I’m about to turn 60.”
He currently sits on the board of several organizations including the East Bay AIDS Walk Organizing Committee, and the African-American AIDS Emergency Task Force which has morphed into an organization that is addressing disparity. He encourages folks who know their status to get active. “The community can come up with a plan together. My idea would be to take that plan and go out and look for money instead of just following what funders want us to do.”
For it’s part, Alameda County Public Health Department is undergoing some restructuring in order to better manage limited resources. They are merging the current HIV/AIDS, AIDS epi/surveillance, and STD Units and hiring more staff at the Doctoral level. They are also collecting and verifying more data to track where HIV positive individuals are in the continuum of care. In other words, to see who’s tested positive for HIV, who’s gone to the doctor to treat it, who continues to go to the doctor and how long they are able to keep from progressing to AIDS.
These efforts have required different hospitals, testing labs, and the county health department to coordinate methods of record keeping. While all labs are required to send information to the county, some were sending paper printouts or floppy disks. Several Kaiser Hospitals were also sharing limited data with the county because of company policies around HIPPAA compliance (the Health Insurance Portability and Accountability Act requires health care providers to get consent before sharing patient records). Most of these issues have now been resolved.
“We have come so far on our HIV effort in Oakland on our willingness to work together and pull together. It’s not always easy. But it’s possible.” says Dillard.