The trusty fireworks phrase “elections have consequences” has been shot off so often over the years that it has lost all sizzle and luminosity. Too bad. It actually means something to LGBT voters and people with HIV/AIDS. Imagine, for a moment, if gay ally Jimmy Carter had been reelected president in 1980 instead of Republican Ronald Reagan. The White House-driven governmental response to that first CDC report 35 years ago about gay men succumbing to a mysterious deadly disease would have been very different. Instead, HIV/AIDS burst into a worldwide pandemic that is still not over. And while new drugs promise to stem the rate of new infections, access and awareness is not universal or quickly embraced.
California got some good news on the HIV front, however, with Gov. Jerry Brown signing the important SB 1408 that allows organ transplants between HIV positive individuals. But HIV/AIDS only popped up recently as an issue in the Democratic presidential campaign because Democratic former Sec. of State Hillary Clinton praised Nancy Reagan at her funeral. The subsequent outrage led to a meeting between Clinton and AIDS activists, followed by a meeting between her primary rival Vermont Sen. Bernie Sanders and activists, which shed more confusion than light. However, unlike presumptive Republican nominee Donald Trump—who has given contradictory answers to funding PEPFAR—both Clinton and Sanders answered an HIV/AIDS questionnaire from AIDS United, with Clinton giving a more nuanced and detailed response on HIV criminalization than Sanders’ cryptic generalizations.
Recent polls show that the Clinton-Sanders race is neck-in-neck before the California Primary on Tuesday, June 7. It is unclear if AIDS activists will make HIV/AIDS an issue in the general election in November.
But the issue of HIV/AIDS, especially of HIV criminalization, is no side-eye joke. As the Sero Project, Equality California, and other organizations have pointed out, the stigma against HIV remains so intense in some states, laws are being crafted or exploited, often without much publicity, that find ways to inject HIV into a criminal complaint.
California started putting a stop to that on May 27 when—in one hour—both houses of the state legislature approved a bill allowing HIV-positive people to donate organs to others who are HIV-positive. Gov. Jerry Brown signed the measure shortly after SB 1408 passed, largely in response to the urgent plea from San Francisco surgeon Dr. Peter G. Stock, who said he had two HIV-positive patients in desperate need of liver transplants, one of whom had a waiting donor.
“Right now there is a felony associated with that donation,” Sen. Ben Allen (D-Santa Monica) said in introducing SB 1408, noting that 22 Americans die every day while waiting for a transplant. “Let’s take care of this stigma. Let’s take care of this injustice.”
California Atty. Gen. Kamala D. Harris lent her voice to the proposed change, telling lawmakers in a letter to “quickly remove these outdated criminal penalties and permit Dr. Stock and others to perform these groundbreaking and life-saving surgeries.”
Stock, professor of surgery at the UC San Francisco Medical Center, was thrilled with the swift action.
“I’m stoked,” he told the L.A. Times. “It’s going to mean something for 60 patients on the waiting list who have HIV but it also means something for the 4,000 other people on the waiting list who don’t have HIV because for every donor we add, somebody benefits.”
His patient will undergo surgery “as soon as possible,” Stock said, with the patient’s husband agreeing to donate a portion of his liver, understanding that the liver will regenerate in the weeks after that.
SB 1408, co-sponsored by Equality California, AIDS Project Los Angeles, The Los Angeles LGBT Center, and Positive Women’s Network-USA, comes one month after the first successful HIV-positive organ transplants at Johns Hopkins Medical Hospital.
“It should not be a crime to save someone’s life,” said Rick Zbur, executive director of Equality California. “This is the first step in what we hope will be a number of measures to modernize California’s antiquated laws that harm and stigmatize people living with HIV.”
Monica Johnson, Board President of Donate Life California, is stoked, as well. She noted in a phone interview on Thursday that people who have been living with HIV for many years may be suffering from destroyed liver functions as a result of prolonged use of HIV medications.
“HIV isn’t a death sentence like it used to be,” said Johnson, who is also executive director of Sierra Donor Services, an organ recovery organization in the Sacramento area. “I’m excited about the bill’s passage and Gov. Brown signing it into law. It’s an opportunity for those who need transplants to live productive lives.”
Johnson said she wasn’t even aware that the antiquated prohibition was on the books until Dr. Stock talked about how his HIV-positive patient desperately needed a transplant and couldn’t get it in a timely fashion. Though HIV-positive patients can receive organ donations from HIV-negative people, there is a “huge demand” for organs, she said. Last year, there were 3,000 transplants in California—but 1100 people died while waiting. There are 22,000 people currently on the waiting list.
The law also debunks the myth, extrapolated from the ban on gay men giving blood, that members of the LGBT community in general are prohibited from organ donation. Not true, Johnson said. Everyone must go through the same rigorous testing protocols, with blood, tissue and organs being tested for infectious diseases such as hepatitis, the West Nile virus and HIV. “We’ve been testing this way for years,” she said. Now “if an organ donor turns up HIV, they are pared with someone who is HIV-positive on the waiting list.”
It is estimated that 600 HIV-positive donors could save more than 1,000 people each year, according to Donate Life California.
SB 1408 nullifies a section of the California Health and Safety Code that makes it a felony punishable by up to six years imprisonment for “Having knowledge that one is HIV positive while donating blood, organs, tissue, semen or breast milk.” The intent was to bring California law into compliance with the 2013 federal HOPE Act (HIV Organ Policy Equity) that allows an HIV-positive person to donate an organ for transplantation into another HIV positive person. But here is where it gets confusing, with two different federal agencies overseeing apparently overlapping issues: organs are regulated by the Health Resources and Services Administration (HRSA), while blood and tissue are regulated by the Food and Drug Administration (FDA)—but “tissue” in the HOPE Act does not include human organs such as the kidney, liver, lung or pancreas. The FDA’s modified legal ban on gay men donating blood, however, is still in effect.
Last December, The Williams Institute at UCLA School of Law took a deep dive into HIV criminalization, which its scholars describe as “statutes that either criminalize otherwise legal conduct or that increase the penalties for illegal conduct based upon a person’s HIV-positive status.” More than two-thirds of U.S. states and territories have HIV criminal laws, some of which do not require the actual transmission of HIV or which criminalize conduct “that poses a negligible risk of transmission, such as spitting or biting.”
Until Brown signed SB 1408, California had four HIV-specific criminal laws, and one non-HIV-specific criminal law “that criminalizes exposure to any communicable disease” with no transmission required. Yet even when there is no exposure or transmission, the HIV positive person is often unfairly subjected to stigma and is not believed in court, and thus suffers huge unfair penalties.
“These laws were unjust and bad public health policy even when they were enacted, from a place of ignorance and fear, in the late 1980s,” said Equality California’s Zbur, who is working in coalition with Californians for HIV Criminalization Reform. “It is unconscionable that these laws are still on the books and have not kept up with modern advances in HIV treatment and understanding. Major HIV/AIDS funders such as the Elton John AIDS Foundation and the Elizabeth Taylor AIDS Foundation have made modernizing HIV criminal laws a top national priority.”
The Williams Institute scholars worked with the California Department of Justice to compile data on the use of HIV criminal laws between 1988 and 2014. They found that the vast majority — 95 percent — of incidents impacted people engaged in or suspected of engaging in sex work; 57 percent of all enforcement occurred in Los Angeles County, home to 37 percent of people living with HIV/AIDS in California. They also found profound race and sex-based disparities, though not the root causes for why the disparities exist.
For instance, African-Americans and Latin@s make up just over half (51 percent) of people living with HIV in California, but account for two-thirds (67 percent) of the people who came into contact with the criminal justice system based on HIV status. Women are less than 13 percent of the HIV-positive population in California but account for 43 percent of those who came into contact with the criminal justice system based on their HIV-positive status—with black women accounting for 21 percent of those contacts, though they are only four percent of HIV-positive population.
By comparison, the Williams Institute notes, white men comprise 40 percent of the HIV-positive population, but only 16 percent came into contact with the criminal justice system and those were “significantly more likely to be released and not charged.” The starkest disparity was among those believed to be engaged in sex work under the solicitation-while-HIV-positive statute. “White men were not charged in 70 percent of cases, while all others were not charged in 42 percent of cases,” the Williams Institute reports. “Conversely, in those same incidents, white men were charged with an HIV-related crime 12 percent of the time, while all others were charged for an HIV-related crime 31 percent of the time.”
Amira Hasenbush, Jim Kepner Law and Policy Fellow at The Williams Institute and co-author of the HIV Criminalization report, is not sure of the wider impact of the HIV organ donation law. “I think that the new law is different in many ways from the other HIV criminalization laws on the books, so I can’t say how it will impact the reform and repeal work on the other laws,” Hasenbush said in an email Thursday, June 2. “However, the legislative advocacy work that folks on the ground have done is likely beginning to educate legislators about the modern state of HIV science, and education and knowledge are the first steps in the process” of undermining and overturning HIV criminalization laws.
Donate Life California CEO Eric Burch is also thrilled about expanding the donor pool.
“June is LGBT Pride Month, which is about recognizing the contributions of lesbian, gay, bisexual and transgender individuals and engaging them to continue to make a difference in their communities. One life-changing step they can take is to register as organ donors,” Burch said in an email. “And, thanks to the passage of SB 1408, HIV-positive individuals now have that opportunity, as well. Organ donation saves lives and we are grateful to Equality California for helping us get the word out to the LGBT community.”
To register to be an organ donor, check “YES!” at the DMV on your driver license or ID form, or go to donateLIFEcalifornia.org and click on the “Sign Up” button at the top of the page.
LGBT individuals can also become living organ donors. For information about living kidney donation, go to LivingDonationCalifornia.org.