Women Who Use Drugs: Challenges Demand Self-Led Harm Reduction

    Bree Cassell first injected heroin when she was 15 years old. Despite wanting to do so, she was so scared of the needle that it took two men to hold her thrashing body down, and a third to inject the drug into her vein.

    Now 26, Cassell frequents a syringe exchange program in Wilmington, North Carolina, for sterile injection equipment, overdose prevention supplies, and friendly faces.

    The small exchange—just a whitewashed room in an aging strip mall—doesn’t boast much. But the two women who run the exchange, Becca Lilly and Bernadette Calicchio, have done their best to make it welcoming and comfortable to people who seek refuge there.

    Bright Christmas lights deck the walls and old tables are draped in cheerfully-patterned cloths. The exchange offers free clothing, food and toiletries. On one desk a collection of greeting cards is marked, “Write a card to someone you love. We’ll provide the stamp and mail it.”

    In late April I visited the exchange for its inaugural Women’s Day, a Friday afternoon where only women could visit the program. The ladies had decked a long table with snacks and party favors, wrapped in pink crepe paper, to welcome their guests.

    While we waited for people to show up, I sat down with Cassell and Lilly to learn about their experiences with drug use. Both were introduced to IV heroin, at 15 and 16 years old respectively, by male friends. Both have engaged in sex work to buy drugs at the request of male partners. Both have experienced the difficulty of finding affordable drug treatment programs for women.

    The Wilmington exchange. The photo at the top of this article shows, from left to right: Bernadette Calicchio, Bree Cassell and Becca Lilly.


    Severe Gender-Specific Challenges

    Many of the challenges faced by people like Cassell and Lilly are not just unique to drug users, but unique to women. Women represent approximately 40 percent of people who use illicit drugs in the United States and about a third of drug users globally.  

    Female drug users are more likely than their male counterparts to perform sex work and to experience intimate partner violence associated with drug use. They are at elevated risk for HIV, and have additional challenges in pregnancy and the strong stigma that comes with being a mother who uses drugs. Fewer treatment centers are available for women than men, resources inside the criminal justice system overwhelmingly favor men, and even most harm reduction programs fail to cater to women’s specific needs.

    “Sometimes I would be sick for hours [waiting for him]. I was so sick one day that I sat there and tried to do it myself… It was a terrible experience.”

    For many female drug users, the gender-based differences start right away. Studies show that women who inject drugs are more likely to experience their first injection with a male partner and to continue to rely on men to inject them and to acquire drugs. This reliance not only increases a woman’s dependence on a male partner, but also puts her at greater risk for HIV and other infections if the partner injects himself with the needle first.

    Cassell recalls her total dependence on a male friend to inject her during her first month of IV drug use. But the friend lived two hours away and couldn’t always come help.

    “Sometimes I would be sick for hours [waiting for him],” she said. “I was so sick one day and crying on my kitchen floor that I sat there and tried to do it myself… It was a terrible experience.”

    Not all women begin injection drug use through a male friend or partner, but the experience is common enough that some harm reduction programs have classes specifically designed to teach women to inject themselves.

    Jess Tilley, founder of the New England User’s Union, co-facilitates a survival-sex work group that focuses on this issue. She finds that one of the unintended outcomes of these classes is to help women exit abusive relationships.

    The prevalence of sexual and physical abuse is three-to-five times higher among women who use illicit drugs than among women who do not. The risk of HIV is also higher. Studies in nine European countries have shown average HIV prevalence to be twice as high among women who inject drugs as among men.

    The stigma against sex work “can ruin your reputation. It can make you feel suicidal because all these people are just degrading you.”

    Research also shows a strong correlation between drug use and sex work. Approximately 30 percent of women who engage in sex work globally are drug users and a substantial portion of them experience violence, which they are typically unable to report due to the criminalization of their activities.

    “If there is a man and a women who are dating and they both have substance use issues, typically it is the man who is going to find out where [the drugs] are,” said Becca Lilly. He looks to the woman to “go make the money so we can get well.”

    Cassell confirmed this account. Women think, “he can’t sell his body, I have to sell mine,” she said. She added that especially in the age of the internet, women who are discovered offering escort or sexual services online may face intense bullying from neighbors and acquaintances, which can drive up the desire to use drugs to cope.

    The stigma against sex work “can ruin your reputation. It can make you feel suicidal because all these people are just degrading you,” Cassell said.


    Victimization of Pregnant and Parenting Drug Users

    Stigma-based guilt and shame are further compounded if a woman becomes pregnant. Expectant mothers who use drugs are often subjected to laws that criminalize their pregnancies and are given inaccurate information about drug use during pregnancy that could result in harm to the baby.

    Dinah Ortiz got pregnant at the age of 29 during a time when she was actively using drugs in Orlando, Florida. She began taking methadone, which is medically recommended for pregnant women who use opioids. But when she went to see an OB/GYN, stigma triumphed over science.

    “He kicked me out of the office and said I should have stayed on heroin,” Ortiz recalled. She ended up getting into a methadone treatment program and gave birth to a healthy daughter, but she never forgot the way she was treated.

    “Men [who use drugs] have more leeway to roam around,” she said. “Women are faced with having to get our lives together within a certain amount of time or else we are unredeemable.”

    “Once you get pregnant, [people] expect you to just stop. If you don’t, then you are a bad mom.”

    Lilly, who became pregnant at 19 years old, was slightly more fortunate than Ortiz. Her OB/GYN understood that methadone treatment was safest for the baby, but three weeks passed before a bed opened up in a program that would accept pregnant women. During that time, Lilly continued to use heroin; to stop using opioids abruptly can severely harm and even terminate a pregnancy.

    Like Ortiz, Lilly gave birth to a healthy baby. But the stigma against her continued even after her child was safely born and she remained on methadone.

    “Once you get pregnant, even if you are using drugs, [people] expect you to just stop right then and there,” said Lilly. “If you don’t, then you are a bad mom.”


    The Need for Women’s Leadership in Harm Reduction

    Stigma and misinformation about women who use drugs persists even within harm reduction communities and the drug policy reform movement.  

    “The drug user movement has always been predominantly male-dominated,” said Judy Chang, executive director of the International Network of People Who Use Drugs (INPUD), based in London. She explained that often “if there is another marginalized group within [a larger marginalized group], they will be silenced and told to table these issues for the greater good.”

    In 2010, female members of INPUD created their own subgroup, International Network of Women Who Use Drugs (INWUD), to bring women’s voices to policy making decisions. They have been shedding light on issues such as sexual and reproductive health, forced abortion and sterilizations for women who use drugs, and intense stigma faced by women who are pregnant.

    “We wanted to do a women-led campaign [because] all too often … these sentences are offered to a woman as a way of retribution.”

    In the US, some organizations have also undergone a shift towards women’s leadership. Jess Tilley, leader of the New England Users Union, also co-founded the Reframe the Blame campaign to fight back against laws that allow prosecutors to charge someone with murder if they distribute a drug that causes an overdose death. Tilley and her co-founder, Louise Vincent of the Urban Survivors Union, deliberately designed a campaign led by women.

    “When we started Reframe the Blame and were looking for technical assistance, we were continuously pointed towards men,” said Tilley. “We wanted to do a women-led campaign [because] all too often when a child is lost, these sentences are offered to a woman as a way of retribution.”

    Men are welcome to participate in Reframe the Blame planning and events, but the campaign is designed from a feminist model in which leadership and decision-making is shared among participants, rather than controlled by a single head. The model recognizes that women may benefit from different leadership models than those currently operating at most businesses and nonprofits.  


    Gender Differences in Drug Use

    But even with women at the helm of drug user programs, much of the information provided about drugs is based on research that studied male usage and does not reflect the biological differences in how men and women use and process drugs.

    Throughout most age groups, men use licit and illicit drugs at higher rates than women. But women are proportionately just as likely to develop a substance use disorder.  

    And although women drink alcohol and smoke cigarettes at lower rates than men, rates of alcohol-related death are 50-100 percent higher among women, and women’s rates of tobacco-related deaths are fast approaching their male counterparts.

    Public health interventions for these legal drugs, as for their illicit counterparts, have often had unequal outcomes. For example, in Sweden, where the switching of smokers to oral snus has greatly reduced lung cancer rates, cultural factors have severely limited snus uptake among women. Sweden is now one of the few countries where women smoke more than men. And in the US, a recent study showed that anti-drinking-while-pregnant campaigns have the effect of discouraging stigmatized women from seeking prenatal care.

    Female heroin users are typically younger than their male counterparts and more influenced by drug-using sexual partners.

    Important differences hold true for illicit drugs as well. Fewer women use marijuana, but spatial memory is more affected in female marijuana users than in male. Research suggests that the rewarding effects of stimulants, such as cocaine, may have a greater effect on women, and that women typically become more dependent on methamphetamine than male users. Female heroin users are typically younger than their male counterparts and more influenced by drug-using sexual partners. And women are more likely to use opioid painkillers without a prescription to cope with pain.

    Total opioid-involved overdose deaths in the US are about twice as high among men as women. However, from 1999 to 2016, prescription opioid-involved deaths increased sevenfold among women, compared with a fourfold increase for men.


    How Drug Policy Hurts Women

    The differences between men and women who use drugs extend beyond the biological, social and service-oriented realms. Drug policy and laws also affect women differently. Although men still constitute over 90 percent of the US incarcerated population, trends are heading in a very different direction: Over the past 30 years, the number of women imprisoned for drug-law violations leapt 800 percent, compared to 300 percent for men.

    Part of this exponential growth is explained by the fact that most drug laws target low-level users and sellers, who are often women, because they are easier to arrest and charge than high-level players.

    “Women end up charged for things they weren’t directly involved in,” said Meagan Winn, community justice director at the Benedict Center, a Milwaukee program that helps justice-involved women. For example, “it may be the woman’s name on the lease and if there is drug activity in the home, she will be charged with keeping a drug house.”

    It is not uncommon for women to serve prison time for a man’s crimes, even voluntarily, Winn noted. “All the time I come across women serving time for men.” She offered an example of a man and woman being caught with drugs together: If “the man has a lengthy record and the woman doesn’t, the man will ask the woman to [say the drugs are hers] because she will face less time” in prison.

    Many states have laws that automatically place children in foster care if their mother is locked up for a certain period of time.

    Rapidly growing rates of women’s incarceration have detrimental effects on families. Over 60 percent of women in prison have minor children. Maintaining relationships with children is more difficult for women because there are fewer women’s prisonsmeaning that women are more likely to be incarcerated far away from their families. Many states have laws that automatically place children in foster care if their mother is locked up for a certain period of time, which further contributes to family instability.

    Dinah Ortiz lost custody of her three sons while she was incarcerated in Florida on drug charges. Her fourth child, whom she birthed while serving a prison sentence, was immediately placed in a foster home. It took four years to regain custody of her boys. She never got back her daughter.

    “It was difficult because none of the [social] workers were planning for my daughter to stay with me,” said Ortiz. “The laws made it so that my brother and his wife were able to adopt my daughter and they didn’t need my permission.”

    But even for mothers who are quickly able to reunite with children, expectations can be unrealistic. “When the woman is released, the family members who have been taking care of the kids are ready to give the kids right back,” said Winn. “The woman is expected to be able to adjust back into society and take care of kids right away.”

    Wyoming allows people with substance use disorders to attend a six-month program in lieu of prison—but it is only available to men.

    Within the criminal justice system, there are fewer treatment and diversion programs available for women who use drugs. For example, Wyoming allows people with substance use disorders to attend a six-month program in lieu of serving six-to-10 years in prison—but the in-state program is only available to men.

    Bree Cassell once served six months in jail while waiting for a treatment bed to open up in North Carolina’s only state-run community-based substance use program for women. There are only 60 beds for the state’s 1,716 incarcerated women who indicated a need for substance use treatment on a 2017/2018 prison screening test.


    The Drive to Feminize Harm Reduction

    Despite the dearth of resources for women who use drugs, many harm reduction and drug policy reform organizations are beginning to recognize the need for gender-targeted services. Women and Harm Reduction International Network and Harm Reduction International have each released a list of specific demands to help address the needs of women who use drugs.

    For many, it starts with creating a safe space where women who use drugs feel welcome and supported. Allocating women-only hours into programming is one technique to help women who feel uncomfortable in coed spaces due to past trauma.

    “I am adamant about doing outreach teams, meeting women where they are at, whether it’s at home or on the street.”

    Other programs focus resources on mobile harm reduction units that meet women in their own homes. This service is especially important for women with children, who may not have access to childcare or may fear their children being taken away if they appear in public at a program for active drug users.

    “Women have such a higher rate of trauma around men [that] sometimes just coming into a shared space is not an option,” said Tilley. “I am adamant about doing outreach teams, meeting women where they are at, whether it’s at home or on the street.”

    Incorporating women-specific education on HIV prevention, negotiating condom use, self-injection, and how to handle power dynamics with a partner who uses drugs is also important to harm reduction programming.

    Many women “get into the justice system because of relationships and they get out by having positive social supports,” said Meagan Winn. “We [help women] look at the relationships in their lives and look at key ingredients that are helpful and try to support those. [We] look at situations that are more difficult to navigate and try to limit the vulnerabilities.”

    Resources and amenities available at a harm reduction program can be a powerful tool to draw women. For example, programs can offer smooth referrals to reproductive care clinicians, medication assisted treatment and childcare. Even services seemingly unrelated to drug use can be a draw for women.

    “A lot of times health isn’t going to be your first priority,” explained Judy Chang. “In Afghanistan a lot of women were living on the streets and living under the bridge.” They were more likely to engage with programs “if the harm reduction facilities had a washing machine, or something they felt they needed.”

    Even simple amenities, such as offering feminine products, diapers and pregnancy tests at a harm reduction program, can help women feel comfortable.

    Women must be involved in leadership and decision-making at harm reduction organizations.

    But above all, everyone interviewed for this article agreed that in order to activate change, women must be involved in leadership and decision-making at harm reduction organizations.

    When “the organization gets shaped by male voices without women feeling like they can speak out, that also means that the issues that women want to talk about aren’t discussed,” said Chang.  

    Gender balance on harm reduction staff, including the active involvement of women who use drugs in service provision and design, would help to break down this barrier. So too would a reduction in stigma against women who use drugs, especially those who engage in sex work or become pregnant. Even among other people marginalized by drug use, women often feel that they are singled out for special stigmatization. The pervasive feeling of being the worst of the worst can turn many women away from life-saving services.

    “As someone who speaks around the country advocating for drug policy reform, there are days I come home and look in the mirror and still just see a worthless junkie,” said Jess Tilley. “That is what drug policy has done to us.”

    Fighting the stigma against women who use drugs is key not only to service provision, but to survival. Success will take movements of women, by women, for women.

    Photographs by Tessie Castillo.

    R Street Institute supported the production of this piece.

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