We’ve taken a break from blogging the past month to work on our annual conference, Harm Reduction in the House. The conference focuses on how harm reduction can be applied to improve the delivery of housing and other social services. There are a number of nuanced issues that come up for participants in programs using the Housing First Model. This year, conference attendees were able to hone in on areas to use harm reduction including safer substance use practices, sexual health promotion with tools like PrEP, and engagement strategies that promote positive changes like the SODAS Method. The conference hosted several hundred presenters and attendees from around the Midwest including Illinois, Indiana, Wisconsin, Michigan, and Ohio. In this post, we look at some of the reaction and takeaways from the conference.
The theme of this year’s conference was “Growing from Our Roots.” Harm reduction is getting into the mainstream. In recent years, a broader range of programs and providers around the world have embraced harm reduction. Growing from Our Roots is a reminder that harm reduction work began with drug users and people actually engaged in risky behaviors. Their community, respect, and self-determination drive the principles of the harm reduction philosophy in service delivery. They are experts in their own lives and must be included in the work and accompanying advocacy efforts. Daniel Raymond, policy director at the Harm Reduction Coalition, attended the conference and offers additional thoughts on this topic and more in “Holding space for the unredeemed: harm reduction and justice.”
One of the popular sessions at the conference was the “Irreverent: Harm Reduction Youth Work and Radical Ministry” workshop. Rabbi Menachem Cohen and Pastor Alli Baker led a group discussion including youth who are LGBTQ and have experienced homelessness. The conversation explored the experience of homelessness from a young person’s perspective and what providers can do to create safe, welcoming environments. When workers listen nonjudgmentally and remain flexible, they have the power to support youth in getting off the streets and remaining housed. Rev. Kathryn Ray is a member of Clergy for a New Drug Policy and offered her thoughts on this workshop after attending the conference in “Rule Breaking and Radical Love.” She discusses the way that harm reduction can open doors for people and says, “Harm reduction work is gospel work.”
We have to acknowledge that we could not put on this conference without the help of our amazing volunteers. Thanks to everyone who pitched in! Among other duties, we had volunteers live-tweeting the conference. Below are some of the highlights from the day. For a full list of tweets, check out #HousingisHR on Twitter.
Photo credit PrEP4Love.com
The fight against HIV/AIDS advanced tremendously over the last 30 years. Treatments can decrease viral loads to undetectable levels, improving the health of people living with HIV and lowering the chances of transmitting HIV to others. But, with over 40,000 new HIV infections annually in the United States there is more to be done. Additionally, people of color, trans women, and men who are gay or bisexual continue to be disproportionately affected by HIV. In response, the National HIV/AIDS Strategy increasingly promotes HIV prevention efforts.
PrEP (pre-exposure prophylaxis) is a new approach to HIV prevention. PrEP treatment means that someone who is HIV-negative can take a daily pill to reduce their risk of becoming infected with HIV. PrEP does not protect against other sexually transmitted infections or pregnancy. It is intended to be used in combination with other safer sex measures, including condoms. Truvada is the medication currently approved for PrEP treatment by the FDA. The medication must be taken for at least seven days to reach sufficient levels for protection against HIV. PrEP is recommended for anybody at high risk of HIV infection. Primarily, this includes men or transgender women who have sex with men, people who are HIV-negative but have a partner who is HIV-positive, and people who inject drugs.
Research shows people who use PrEP experience a reduction in their risk of HIV infection. Transmission of HIV has been demonstrated to drop by over 90% among people who take PrEP consistently. As explained on the website PrepFacts.org, “If you don’t take PrEP consistently it can’t protect you from HIV, but if you do take it regularly it can offer strong protection.” PrEP is sometimes confused with PEP. PEP stands for post-exposure prophylaxis and can reduce someone’s risk of becoming infected with HIV after they’ve come into contact with it. To be effective, PEP treatment must begin within 72 hours of exposure to HIV and last for a month.
It’s important for housing first providers to be informed about PrEP and PEP and to share information about these treatments with their participants. Housing first providers work with people in marginalized communities who are at a heightened risk of HIV exposure. In addition to the groups previously mentioned, HIV is more prevalent among people who are homeless. Although PrEP is highly effective, one in three health care providers haven’t heard about it. So, it’s up to service providers and other helpers in the community to spread the word about this option.
Even if a health care provider is aware of PrEP, they might be too rushed to fully understand what’s going on with their patient or stigmatize their risky choices. The Housing First Model gives service providers the time needed to get to know someone and find out about potential risks they face. If housing first providers are using a harm reduction approach, they are more likely to get honest information about a participant engaging in unprotected sex or injection drug use. That means that they might be aware of a person’s heightened risk for getting HIV and can bring PrEP to someone’s attention, who may not hear about it otherwise.
Sex feels good. It helps satisfy our need for intimacy and connection. People do it despite the risks of unwanted pregnancy or sexually transmitted infections. As with all harm reduction work, staff's goal is to help people strategize how to get the benefits from a behavior without experiencing the consequences. Creativity is a necessity when service providers are collaboratively building a menu of options to reduce harm in their participants’ lives. But, that creativity can be stifled when staff try to talk about sex and participants respond by saying that they will never use condoms or that they are HIV-positive and sexually active. Don’t be deterred! Just because a person isn’t willing to do something in the safest way possible, doesn’t mean that they won’t consider other strategies that may help. Instead of using fear to motivate decision making, the focus should be on education, options, and empowerment. These values are reflected in many of the public health campaigns promoting PrEP which are more focused on being sexy than scary. Getting comfortable talking about risky sexual behaviors and the pleasure people get from their sex lives positions case managers to introduce options like PrEP to their participants in an appealing way.
Here are some additional resources for learning about PrEP. Check out this website for information on where to find PrEP in your area. PrEP is covered by most insurance providers and Medicaid. For more details about how to get PrEP, including links to available payment assistance programs, go to prep4love.com created by the AIDS Foundation of Chicago. Prepfacts.org was created by the San Francisco AIDS Foundation and includes a detailed list of frequently asked questions. The Well Project focuses on women’s health to address HIV/AIDS and presents a balanced overview of PrEP in the article “PrEP for Women”. On September 23rd the Midwest Harm Reduction Institute will be hosting a presentation on PrEP at the annual Harm Reduction in the House Conference in Chicago. Consider attending the conference or following the hashtag #HousingisHR to keep up with the conference.
Photo Credit OverdoseDay.com
August 31st is International Overdose Awareness Day. It is an opportunity to mourn the lives lost to drug overdose, raise awareness to aid in overdose prevention, and reduce the stigma surrounding illicit drug use. Drug overdose is the leading cause of injury-related death in the United States of America. In 2014, over 47,000 people died in the country from a drug overdose. In 2013, the number of drug-induced deaths (46,471) was more than the number of people killed by car accidents (33,804) and guns (33,636). That same year 29,000 people were killed by alcohol induced causes including dependent and nondependent use of alcohol, as well as death from alcohol poisoning. Everyone should be aware of overdose prevention strategies and the policies that support them. This is particularly true for case managers working in Housing First programs.
Consider some of the risk factors and populations that are correlated with drug overdose death in our country. Overdose is the leading cause of death among people who are homeless. A study assessing adults receiving care at Boston’s Health Care for the Homeless Program showed that drug overdose was the primary cause of death in the population, ahead of cancer and heart disease. Another study in Washington showed drug overdose is the leading cause of death among formerly incarcerated people. People with chronic health problems, primarily those involving a compromised immune system or respiratory problems, are also at a heightened risk of overdose. People who use drugs and are HIV-positive have a 74% greater risk of overdose compared to people who use drugs but are HIV-negative. These groups directly map onto the vulnerable populations served by Housing First programs, underlying a clear need to be informed about drug overdose and develop strategies to prevent it.
Many drug overdoses occur when people are using multiple substances. Opioids are involved in 60% of all drug overdose deaths. Opioids include drugs like heroin, fentanyl, methadone, and prescription pain relievers like oxycodone (e.g. OxyContin) and hydrocodone (e.g. Vicodin). The number of opioid-involved overdose deaths has nearly quadrupled since 1999 and is driving the increase in drug overdose deaths. While many people associate drug overdose with illicit drugs like heroin, it’s important to note that the majority of opioid drug overdose deaths involve a prescription opioid. Pharmaceutical drugs are involved in the majority of all drug overdose deaths. Medications used to treat mental health conditions are also frequently involved in overdose. Besides opioids, this most commonly involves benzodiazepines (e.g. Klonopin, Valium, Xanax). Therefore, it is crucial that service providers expand the range of participants they talk to about drug overdose.
Addressing overdose begins by learning about risk factors and talking with our participants about it. Helpers should be willing to bring up the topic of drug overdose with participants, find out what they know and what experiences they have had, and offer additional information when appropriate. Overdose often happens after a break in using. Tolerance levels for drugs like opioids can change drastically just a few days after someone stops using. This can occur when people are hospitalized or incarcerated, decide to quit or go to a treatment program, or just run out of money. That means the amount of the drug they need to get high will decrease, which may be a benefit for them, but it also means the amount that could lead to an overdose will decrease as well. Tasting, using a smaller amount than usual to determine the potency of a drug, is one strategy people can use to address this risk.
There are other factors to consider like using alone, mixing drugs, and route of administration. A person is more likely to die from an overdose if they use alone. Combining drugs like alcohol, cocaine or rock cocaine, heroin, and pharmaceutical drugs can all increase the risk of overdose. Use of multiple depressants can slow down breathing or other bodily functions to dangerous levels while mixing stimulants and depressants can overtax a person's body. Although injecting drugs increases the risk of overdose or transmitting diseases, some people prefer injection for a variety of reasons including a more intense high or efficient use of a substance. The Chicago Recovery Alliance provides an excellent resource for better vein care and safer injection techniques. For more information on risk factors, check out this worksheet from the Harm Reduction Coalition. In the spirit of a harm reduction approach, this information should be used to emphasize the individual’s safety rather than focusing on use itself. When people become more aware of the risk factors, they are more capable of making safer decisions about their drug use.
A drug overdose doesn’t have to result in death.
It’s also important to be informed about laws and other resources designed to curb overdose. The two main legal measures to address overdose death are naloxone access and Good Samaritan Laws. A drug overdose doesn’t have to result in death. Naloxone (Narcan) is a medicine traditionally used by first responders to reverse drug overdoses involving an opioid. By blocking opioid receptors in the brain for 15-30 minutes, naloxone can restore breathing and enable a person to survive an overdose. Many states are increasing access to naloxone for anybody who may witness or experience an overdose. In those states, people who use drugs, as well as their family members, friends, or service providers can carry naloxone in case of an opioid overdose. Find naloxone or overdose prevention programs in your area by using the Naloxone Finder.
Good Samaritan Laws provide legal immunity or other protections for people who call 911 to report a drug overdose. For instance, if someone calls to report that their friend is overdosing, a Good Samaritan Law can prevent them from being charged with possession of a controlled substance. Some participants are still concerned about the police arriving when they call 911. Telling the dispatcher that their friend has stopped breathing, as opposed to saying they are overdosing, increases the likelihood that only paramedics will come to the scene. To determine the exact laws in your state, check out the Law Atlas pages on Good Samaritan and naloxone.
Finally, make space to mourn and to act. Too often, families and loved ones are denied the ability to grieve when a life is lost to a drug overdose. The stigma associated with drugs contributes to shame about a substance-related passing. We should treat a death from drug overdose like any other death—a tragedy that impacts the lives of family, friends, and communities. Create space in your programs for participants to remember those they have lost to drug overdose. Attend a remembrance event, post something about drug overdose on social media, advocate for naloxone access in your community, or speak about the issue in your social service agency. The situation may seem bleak. But, there are concrete strategies everybody can implement to address drug overdose and reduce its impact on our communities. Too often, programs and service providers don’t consider their agency response to drug overdose until one of their participants has been affected. Make International Overdose Awareness Day the reason that you start or continue this conversation in your own program.
Housing First programs prioritize highly vulnerable people with a serious mental illness who are coming out of extremely stressful circumstances. Considering these factors, it's expected that case managers will encounter some participants who experience psychosis. Psychosis refers to the presence of psychiatric symptoms involving a loss of contact with reality. These symptoms are the defining features of schizophrenia-spectrum disorders. But, these symptoms can be present for other reasons including: a mood disorder (most commonly bipolar disorder but also depression); substance use (e.g. hallucinogens or alcohol withdrawal); a physiological condition (e.g. head injury or migraines): or even just extreme deprivation caused by a lack of sleep, food, or water. Symptoms of psychosis include delusions, hallucinations, disorganized thoughts or behaviors including becoming catatonic, and negative symptoms (decreased motivation, limited emotional expressions, and decreased interest in pleasurable activities or social interaction).
It’s important to distinguish between delusions and hallucinations. Delusions are fixed false beliefs that may include the belief that a person has special powers (grandiose) or that someone is controlling or inserting thoughts into someone’s mind. Sometimes it can be hard to identify whether something is delusional because there may be degrees of truth. For instance, people may experience persecutory delusions (a belief that they are going to be harmed or harassed). In reality, many people we work with regularly encounter harassment and abuse related to their mental illness, lack of money, housing status, race, gender identity, or sexual orientation. Hallucinations are sensory experiences that occur without an external stimulus or outside input. A person may hear, see, smell, taste, or feel something that isn’t actually there. They may appear to be listening and responding to voices without anyone in view talking to them. Visual hallucinations tend to involve scenes with family members or animals (bugs crawling on your arm), seeing shadows, or visual distortion. To get an idea of what it’s like to experience auditory hallucinations check out this video and for an example of what visual distortion can feel like look at motion aftereffect illusions. Imagine how difficult these experiences can make going about your daily life.
Experiencing psychosis can be distressing and even harmful, regardless of the type and cause. Psychosis is associated with an increased risk of depression and suicide, impaired functioning in school or employment, and strained relationships resulting in a loss of supports. Symptoms of psychosis usually begin when people are between the ages of 16-30. Early intervention is important because the duration and severity of a psychotic episode can increase the likelihood of additional episodes and poor outcomes in the future. Coordinated Specialty Care (CSC) is a treatment program specifically developed to support people experiencing their first psychotic episode. CSC providers develop a personalized treatment plans that can incorporate medication, therapy, case management, education or employment, and family support to address a manage psychosis.
Because of the risks associated with psychosis, case managers and other helpers can use a harm reduction approach to support people. As with substance use, the focus should be on reducing the negative consequences of psychosis. Case managers should help participants learn to manage psychotic symptoms in a way that reduces their impact, instead of emphasizing the elimination of symptoms. The presence of psychosis does not have an inevitable result. It does not mean that a person can’t maintain housing and independence. As Sam Tsemberis, CEO and Founder of Pathways to Housing, explained in the @Home documentary segment on Housing First, “People have a functional ability and it’s quite separate from their diagnosis. You can believe that the government is after you or that there are people flying in from outer space and they’re going to take over the planet. And, leaving all that aside, you can still go get a ham and cheese sandwich and some French fries, have a meal, or go shopping.” Understanding that people who experience psychosis can and do successfully stay housed is essential for effectively using the Housing First Model. Below, are some things to keep in mind to support people experiencing psychosis.
people who experience psychosis can and do successfully stay housed...
Begin by assessing for safety. People with psychosis are at an increased risk of suicide. If a case manager thinks a person is at risk of hurting themselves, they should be direct and open about the topic. A case manager should try to figure out if the person has a specific plan, previously attempted suicide, and the likelihood that they will act on their suicidal thoughts. The risk of violence to others is also a possibility. However, it’s important to point out that people with a mental illness are not more likely to commit violent acts. Instead, they are over 10 times more likely to be the victims of violent crime than the general population. If there is a clear threat, consider assisting the participant with hospitalization or safety planning and contracting.
Don’t argue with psychosis. The nature of delusions is that they are fixed beliefs and unlikely to change based on conflicting evidence. Arguing with people about the validity of their idea will only encourage them to dig in their heels, find faults in your logic, and possibly even refuse to continue working with you. As with all harm reduction work, the quality of the relationship is essential. Case managers should align themselves with their participants and avoid being confrontational. Even casual statements like, “Don’t be silly” or “Get it together” can be dismissive and isolating. Remember that whatever they are experiencing is real to them and genuinely affects them. Help people explore their symptoms and speak in a calm, clear, and concise way. Don’t pretend to hear what the person hears or share in a false belief. Without feeding into a delusional thought, we can still identify with the feelings it creates in a person. For instance, a case manager might say, “It’s really scary to feel like you’re constantly being watched by others. That takes a lot of strength and courage. How do you manage to get through your day despite that?”
Help develop a list of options that can include personal coping strategies and professional support from a psychiatrist, therapist, or case management team. As we mentioned in a previous post, a participant has a right to choose whether or not to take medication. Although medication is considered a go-to response for the treatment of psychotic symptoms, there is some research showing that people may benefit from managing psychosis without medication. A recent study compared people with schizophrenia who were being treated with antipsychotic medications and those who were not. The study showed similar levels of symptoms but higher levels of general functioning among people not taking medication. Although medication may be most effective for some, we should explore strategies beyond medication with all of our participants to help them cope with psychosis. Don’t assume that someone needs medication in order to be successful in housing. At a recent training, one attendee mentioned a participant who was homeless for 25 years prior to being housed in their program, does not take medication, and maintains the cleanest apartment of anyone on their caseload!
Respect people’s right to use drugs. People may use illegal drugs or alcohol to self-medicate the symptoms of psychosis. For example, participants have reported using depressants like alcohol, heroin, or other opioid pain relievers to drown out voices and help them sleep. There might be therapeutic benefits to other substances as well. As researcher and journalist Helen Redmond explains, “Nicotine may even have specific properties that ‘treat’ symptoms of schizophrenia.” Consider the capacity for nicotine to improve mood, memory, and concentration and how that may balance the impact of psychosis. In a harm reduction program, helpers should never remove a helpful coping mechanism before finding substitutes. With substance use or psychosis the course of treatment is the same—to nonjudgmentally help people explore and understand the function, the potential consequences, and the alternative ways to manage it.
Some additional resources for information on psychosis include Mental Health First Aid, the National Alliance on Mental Illness (NAMI), and the Hearing Voices Movement.
In our country, mental health treatment increasingly emphasizes the use of psychotropic medications. As we’ve searched for the magic bullet for these complex conditions, we’ve moved away from other forms of support, like psychotherapy. This shift has occurred despite evidence that medication is most effective when it is coupled with therapy. From the outsider’s perspective, the solution to someone’s mental health problems can appear simple: “Just take your meds”. Too often, we believe that medicine is completely safe and effective because it was prescribed by a doctor. This can be a dangerous assumption. Psychotropic medications are drugs—they can positively affect a person’s mood or state of mind but they also have the capacity to harm. Providers can use a harm reduction approach to engaging with participants about psychotropic medications to ensure that they are used in the most beneficial way possible.
Our participants have the right to choose whether or not they use psychotropic medications. We should acknowledge their experience and autonomy. Nobody is better equipped to describe the effects, good or bad, of a medication than they are. Just like the decision to use drugs must be respected, sometimes our participants will decide that their best option is to not use psychotropic medication altogether.
A harm reduction approach to psychotropic medication means it is not framed as a requirement for mental health treatment and recovery. Instead, medication is presented as an option to be considered. The job of a case manager is to help participants make an informed choice. Participants have legitimate reasons not to use psychotropic medications, often based on previous negative experiences. We should ask about these reasons and take them seriously, refraining from judgement. Harm reduction workers provide space for participants to discuss how their choices are working out and regularly engage with them about the risks and benefits of their choices. But, these conversations can be challenging. This article offers some information and resources to help guide you. The two issues we’ll focus on are medication adherence (i.e., the extent to which people follow a health care provider’s advice about a medication and how to use it) and how to come off of psychotropic medications.
Non-adherence, or not taking medicine as prescribed, can be risky. Research links non-adherence to psychotropic medication with poor outcomes like hospital admissions and suicide. However, non-adherence is not unique to people with a mental illness. Rates of non-adherence to psychotropic medication are comparable to those for physical medications. A lot of things can factor into whether or not a person takes medication as prescribed: the information or understanding the person has about the medication; the degree of improvement or side effects they experience; their ability to afford the cost of the medication; their ability to remember to take the medication or refill their prescription when needed; and the approach of the health care provider prescribing it to name a few. Exploring the barriers to adherence can help them identify strategies to overcome them.
Some effective options to improve adherence include the use of long-acting injections of antipsychotic medications or medication monitoring through community support. However, a relapse of mental health symptoms is still possible while remaining adherent. So, we should talk to participants about their medications and how they are working for them. Even if a medication has been useful in the past, it’s important for participants to continue regular follow up with the prescribing provider to keep an eye out for unwanted side effects. Rxisk is a website dedicated to making medications safer by educating people about the risks and side effects associated with them. Among other resources, it provides a checklist of questions for patients to ask providers about the medication they are prescribing. Case managers should also research and be aware of potential side effects of the medications that the people they work with are taking, so that they can educate, monitor, and check in with them regularly.
When participants choose to stop taking psychotropic medication, case managers should aim to be involved in the conversation and encourage people to involve their psychiatrist in the process as well. The potential for withdrawal with many medications is real. As with other drugs, like heroin or alcohol, our bodies can get used to the presence of certain chemicals which makes it difficult to adjust when they are no longer there. Sometimes the symptoms of withdrawal (e.g. anxiety or sleep problems) can mirror the symptoms of a mental illness or exacerbate them. Remember that even when withdrawal symptoms are present, it is possible to successfully come off of psychiatric medication altogether. For an in-depth guide on this process, check out the Harm Reduction Guide to Coming Off Psychiatric Drugs and Withdrawal from the Icarus Project and Freedom Center. In general, tapering off of these medications is safer. A guiding principle to keep in mind is that the longer someone has taken a medication, the longer it will take to safely get off of it. As with taking medication, the process of coming off of them is one that we should engage with our participants about to review their progress and help them revise their plan as needed.
Medication can help or hurt people’s efforts to manage their mental health. Open-minded conversations about the pros and cons of using psychotropic medications encourage honesty from our participants about their level of adherence to a medication or their ultimate desire to stop using it. In a future blog post, we’ll address other strategies for managing mental health. With or without medication, recovery is possible.