30 Years and Progress


It is not supposed to rain in June. Flower petals fight losing battles against falling raindrops, and ants scurry through the unkempt cracks and crevices of our walls searching for cover. Sports games and barbeques are canceled. Summer storms lull angry gardeners and stir-crazy children to sleep. Weather.com reports that San Francisco has seen more rain in the first two days of June, than the entire monthly average. But maybe in this case, the gloomy weather suits a sad anniversary: 30 years, over 600,000 lives lost, 1.7 million infected, and countless more affected by HIV/AIDS in the United States alone. Anniversary reports highlight the progress made, but the rain prompts us to remember a time when AIDS was a death sentence.

“Probably 85 percent of what we were doing was running out to hospitals and writing emergency wills for people who were dying within months of diagnosis,” Bill Hirsh, executive director of the AIDS Legal Referral Panel, said, recalling the early years of the epidemic in San Francisco. “Now people are coming to us for help with regards to living with HIV, rather than dying with AIDS.”

HIV/AIDS is not what it was 30 years ago. Effective treatment options allow people with HIV to live long and healthy lives. Hundreds of laws protect their rights. Still, the Center for Disease Control and Prevention (CDC) reports that one in five people living with Human Immunodeficiency Virus are unaware of their infection. Among people aged 13-24 years old, this statistic is 58.9 percent. Further, 13-29 year olds account for 31 percent of all new HIV infections in California, according to the California Office of AIDS.

Patients routinely ask doctors to test for chicken pox, measles or mumps, because a diagnosis means treatment. All of these are reportable diseases by law, yet questions of disclosure are an afterthought. But HIV is different. Someone who learns your HIV status can make assumptions about what you do, where you live, and who you are. When an HIV test result can determine insurability, access to housing, and wellbeing, asking to be tested gets complicated.

HIV tests occur in two settings: anonymous and confidential. In an anonymous setting, the patient does not provide any personally identifying information. The doctor delivers the test result, and then shreds the medical record.

In a confidential setting, however, the patient provides information such as name, date of birth, and address before testing. After the patient receives the test results, a positive or negative result becomes a part of their medical record. In a confidential setting, a patient’s test result is linked to their identity, and evidence of a positive test result reaches beyond their medical record.

During the first 20 years of the epidemic, California had a reporting system for AIDS but not for HIV. In 2002, the state began using a 17-digit coding system for HIV cases in order to ensure anonymity.

“In a lot of states, there was still the paranoia and fear that information would be shared, so there were all kinds of coding systems,” Christie Reed, a member of the CDC’s HIV Prevention Branch in the Division of Global AIDS, said. “Because the point of reporting is epidemiology, if one state’s coding system does not overlap with another state’s coding system, then you can’t get the numbers.” California was one of the last states to switch to name-based reporting in 2006.

Name-based HIV reporting works like this: 1.) Jane Doe receives a confidential HIV test from her doctor, who sends her test to the lab for evaluation. 2.) The lab returns the result to Jane’s doctor and 3.) sendsan HIV-related lab report to the Santa Clara County Public Health Department. Jane’s doctor tells her that she is HIV-positive. 3.) Her doctor then also sends an HIV Case Report to the county health department. 4.) The county health department then compiles and unduplicates the reports they receive (meaning that they distinguish one person who has been tested six different times from six different people who have each been tested once). They then submit an HIV/AIDS Confidential Case Report Form to the California Department of Public Health, Office of AIDS. Up until this point, records still link Jane’s name to her positive test result. 6.) The Office of AIDS removes all identifying information from the report and submits the data to the CDC.

Most states have moved toward confidential testing for this reason of comprehensive surveillance. Some testing sites that offer both anonymous and confidential testing even provide incentives for patients to identify themselves. At Planned Parenthood, patients qualify for free confidential HIV testing as part of California’s state family-planning package, but they must pay $60-$160 for an anonymous HIV test, Planned Parenthood Chief Medical Officer Dorothy Ferguson said.

From an epidemiology standpoint, collecting reliable data ensures knowledge of current trends and keeps the state competitive for federal HIV/AIDS funding.  The benefits of epidemiology come with some risks for the patients whose names are attached to positive test results.

“In the early days, people were dealing with discrimination of the most  base kind,” Hirsh said. “We saw families dumping their kids, we saw people barred from returning to their apartments, we saw people fired by employers. There were a lot of really horrible things, including efforts at the state level to quarantine all people living with HIV and AIDS.”

The state and federal governments have enacted many laws to secure HIV status so that this discrimination does not happen. With written authorization, only persons responsible for care and treatment of the patient can exchange information. According to California state law, anyone who “willfully, maliciously, or negligently” discloses testing information may be forced to pay up to $25,000, spend up to one year in jail, or both.

Though HIV/AIDS may not be as debilitating or as physically obvious as it was in previous decades, living with HIV comes with a range of legal concerns including housing, insurance, employment, and immigration.

Hirsh cites housing as the single largest issue for his clients. Only 9.1 percent of people with HIV/AIDS in San Francisco are getting their housing needs met, according to the Department of Housing and Urban Development.

Rent money often takes the back seat to treatment payments. HIV therapy costs roughly $25,000 per year, according to President Obama’s National HIV/AIDS Strategy Report. For people on a disability income, it is near impossible to afford market rents, especially in the Bay Area, Hirsh said. “People who are living with HIV/AIDS have gotten poorer and poorer,” Hirsh said. “People didn’t plan on this disease, and many people who once had resources have gone through them.”

Regardless of whether prospective tenants can afford housing, Landlords can and do discriminate against certain groups perceived to be HIV/AIDS infected, including poor, gay and minority applicants. Hirsh said that about 80 percent of his clients have incomes of $20,000 or less. While AIDS first emerged as a disease for gay men and drug users, it now disproportionately affects racial and ethnic minorities. The CDC estimates that one in sixteen black men in the U.S. will be diagnosed with HIV at some point in their lives.

However, when a landlord denies an applicant housing on these grounds, they break the law. “Landlords have a duty not to discriminate against people with disabilities,” Hirsh said. “They actually have an affirmative responsibility to provide what are called reasonable accommodations, meaning changes in policies and procedures that might otherwise reduce access to people with disabilities.”

The Americans with Disabilities Act prohibits discrimination based on membership within a protected class including people with HIV/AIDS. However, should an applicant ask for a reasonable accommodation based on their disability, a landlord would have the opportunity to gain a limited amount of information in order to confirm the need for specific reasonable accommodations, Hirsh said. These same issues apply to employment.

Though the information that passes through the HIV testing surveillance system never reaches any insurance company or provider, Hirsh said insurance ranks high on a list of legal issues for those living with HIV/AIDS.

California Health and Safety Code prohibits the “use of the results of an HIV test for determination of insurability, except for life and disability insurance.” Health insurers cannot legally require or use an HIV test as a condition of obtaining coverage.

An HIV/AIDS diagnosis becomes more of an issue when applying for a new policy requiring the applicant to disclose their medical history. If a positive HIV test result is already on the applicant’s medical record, health insurance providers can consider HIV a preexisting condition, according to Kama Brockmann, policy and program coordinator at the California Office of AIDS. Further, life and disability insurers can refuse coverage on the basis of an HIV test.

“Insurance providers are finding all sorts of creative ways to deny benefits to people living with HIV,” Hirsh said.  Accordingly, the San Francisco AIDS Foundation reports that the majority of HIV-positive individuals in the U.S. continue to receive health care through Medicaid, Medicare, and the Ryan White HIV/AIDS program. Though not perfect, the legal system with regards to HIV/AIDS protections has come a long way over the last 30 years.  “Many of the questions concerning laws and legislation around testing and how results would be used have been dealt with over the years,” Reed said. “But there is still a lot of fear. Obviously people are afraid, especially in California.”

Thirty years ago, Los Angeles and San Francisco served as epicenters of the AIDS epidemic. California ranks second only to New York in cumulative AIDS cases, composing 14.2 percent of total U.S. cases. More than 60 percent of Californians living with HIV reside in either Los Angeles County or the San Francisco Bay Area.  “Back then if you were identifying someone as positive, all we could tell them on an individual level was grandmother’s advice, ‘eat good food, get good sleep, rest,’” Reed said. “When treatment was developed, that changed everything.”

Testing became life saving. Today, the CDC recommends “routine HIV screening in health-care settings for all adults aged 13-64 and repeat screening at least annually for those at high risk.” Some, like Ferguson, think testing everyone is a “nice idea” but not a practical one. Others, like Reed, praise the difference that testing can make on a global scale. “Ten years ago, in many parts of Africa, when I drove down the roads I saw coffin makers and funeral services all the time,” Reed said. “With testing, counseling, and getting into treatment, that’s not so obvious anymore. The wood makers who shifted to coffins are shifting back to wood products, and it all starts with knowing your status.”

With so much rain, a break in the clouds seems that much brighter.


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