The Big Fix

by Tracey Helton Mitchell

  Not to say there are no issues with buprenorphine. I hear reports of doctors refusing to prescribe the much cheaper generic form of the medication. With HMOs, there may be only a handful of plan doctors, leaving hundreds of patients on the waiting list. In private practice, the costs for the medication can be quite prohibitive, including $450 for the initial visit, plus hundreds more for office visits, urine tests, and blood work. Many providers refuse insurance because their waiting rooms are full of patients willing to pay cash. For patients desperate to get off opiates, the monthly cost of MAT can easily surpass that of food, rent, or a car payment.

  My hope is that we can reform these systems to make them more affordable, more equitable, and more patient friendly. Despite the potentially high profit margins for providers, waiting lists can take months. In some states, like Kentucky, concerns around buphrenorphine “pill mills” have even caused some clinics to close or severely restrict the number of patients an individual practice can take. There is no shortage of need, only a shortage of hope.

  In the final piece of my journey to recovery, I was ready to commit to total abstinence from all drugs. I perceived this to be my last chance. I felt as if I had tried everything else. I’d been offered the chance to go to treatment a few years prior, but I refused—I didn’t want my parents to have to take out a second mortgage on their home to send me to rehab. At that time, I knew I was not going to stop using drugs. This was my reality. When I was finally ready, I was lucky. I was able to stay in a residential treatment facility for a little over ninety days. This gave me enough time to learn to cope with my emotions. This gave me enough time to learn how to avoid people who were using. This gave me enough time to find both a job and stable housing. Even if I wasn’t completely “ready” to leave at the end, I had a good start.

  In today’s environment, ninety days in rehab is a junkie unicorn—a fantasy for anyone without money. The standard stay in treatment is only twenty-eight to thirty days. As private insurance companies and government-run programs like Medicaid look to cut costs, it appears there is an emphasis on quantity of patients over quality of care. While more patients are churned through the system, there is little work being done to verify patient outcomes. Generally, this information is provided through self-report, which can be extremely unreliable considering the sensitive nature of substance abuse. In addition, short-term inpatient rehab is barely enough time for an opiate user to be able to recover from post-acute withdrawal syndrome, or PAWS. PAWS happens in the period after detoxification during which users may experience anxiety, mood swings, low energy, depression, and, in the worst-case scenario, thoughts of suicide. They may discover they have some condition that they’ve been covering up with drugs, and feel the impulse to self-injure. If I had gone through shorter-term rehab, by the time I started to feel a little better, it would have been time to go! Aftercare, if offered, is often both minimal and optional. Even after ninety days in rehab, I completed another three months of aftercare and just short of four years in a sober living environment (SLE).

  SLEs, which generally are not covered by insurance, are houses managed by a former resident or another person in recovery. The rules vary as much as the amenities do. The SLE I lived in was made up of single rooms in an old converted hotel in one of the worst areas of San Francisco. I received no counseling, but was required to attend church or twelve-step meetings during my first year. My rent was kept low with the hopes that I would save money to transition into my own place. There was no kitchen, a shared bathroom down the hall, and broken furniture. It was perfect for me at the time, though I had numerous friends balk at the mere suggestion of moving there.

  There is little in the way of regulation and standardization in the SLE industry. The barriers to starting an SLE are nearly nonexistent, and the need is great. What constitutes a sober living house? Even with the research I did, it was difficult to find an answer to that. Anyone with a rental property can open a building and call it sober living. This is confusing and dangerous for those seeking substantial support after treatment. Some have rigid standards by which a resident can be put out in the street on the same day he or she has a positive urine test. Some have no real system for locking up medications, making theft commonplace. There are sober living places that look like luxury apartments, while others have parolees stacked in bunk beds. If the period after treatment can be the most dangerous time, then we need some standardization in programming to safely house those who are trying to stay clean.

  My sober living program was based on the idea that the twelve-step program was the only way to stay clean. I will freely admit, there were days when twelve-step meetings were my sole reason for leaving my room. However, I question the need to require twelve-step meetings as a condition for residency in any program. I may seem critical of the twelve-step program, but this criticism is not without merit. Although it was an important framework for my recovery, it wasn’t the sole reason for it. And there were times in twelve-step when I found myself in situations that could have had some serious consequences. On several occasions, I received inaccurate information and even worse advice. I was the victim of predatory behavior of males in the meetings. I was exposed to an ideology of forgiveness of others that directly clashed with my efforts to cope with PTSD.

  When alternatives to twelve-step are available, I feel strongly that those seeking recovery should have the right to pursue what works for them. I cringe at the “one-size-fits-all” approach, because I have seen what happens when it fails too many times.

  I received this email from a parent after many months of correspondence. She was looking for a way to help her son who had tried to be other people’s idea of “clean”:

  Hi Tracey: My son didn’t survive. I feel like he might have tapered off too soon. It wasn’t long before I found him. He was dead. He had been out drinking with his friends. He just wanted to be like everyone else. I can’t blame him. I thought he was doing well. He went back to school, he sounded fine. No one knew he had relapsed. My son died all alone as a result of this disease.

  Whether or not we agree that addiction is a “disease” as discussed in twelve-step literature, we can agree that the premature death of a person is a tragedy. Think of all the lives that were touched by this young man. His family, his friends, his teachers, his neighbors are all left with that feeling: What could I have done to save him? The answer could have come in the form of naloxone, if only he’d had access to it. Naloxone, commonly known under the name Narcan, is used to temporarily reverse the effects of an opiate overdose, often saving the person’s life. While it may not be effective in every instance, it is an inexpensive tool slowly becoming available to the general public.

  As deaths from opiate overdose reach epidemic proportions, including naloxone in standard first aid kits could save thousands of lives. Most people who have overdosed were with someone else who potentially could have saved them. Naloxone kits were not available when I was using heroin, but I certainly would have carried one. Even though I have never experienced a relapse since leaving treatment, I certainly have experienced the pain of losing people close to me. In late 1998, I was casually reading a newspaper when I came across an article about the rash of fatal overdoses in San Francisco. Among those names, I saw my friend, Jennifer. She was a beautiful person, a bright soul. She had written me a letter of encouragement when I was in jail. I lost many friends before Jennifer, and after. But her death inspired me to action. Since 1999, I have worked to prevent overdose deaths. Although Jennifer was found alone, there was a high probability someone was with her when she began to overdose. This was a person who might have saved Jennifer’s life if he or she had been willing and equipped to get involved.

  We’ve made progress in the U.S., but there are still many states with no naloxone programs and no Good Samaritan laws that offer specific protections related to overdose. In the years I was using, I performed CPR on five different people to revive them from overdoses. In one case in particular, I p
erformed CPR with rescue breathing to the point of exhaustion. I was about to give up on her when, fortunately, the paramedics arrived—with a police escort. I was threatened with being taken to jail because I was using heroin. I was appropriately responding to a medical emergency! My first thought when I found this woman should not have been “Should I leave her?” because I was afraid of going to jail for my involvement.

  Calling 911 with no legal repercussions, increasing distribution of naloxone, and supporting education about overdose are key pieces in the chain of survival. In my work distributing naloxone, I’ve seen how easy it can be to save a life when people have the proper tools. I’ve also seen how difficult it can be when nothing is there to help users in their time of need.

  Addicts cannot get clean if they are dead. How many more lives will be needlessly lost before we create more commonsense health policies in the United States? While for many my story has been one of hope, I think of it as a call for action. In the time it has taken for you to read this book, how many people died because they had no access to naloxone? What infections were caused because people had no access to clean needles? How many family members were unable to sleep as they waited up to learn whether their loved one was safe after being kicked out of rehab? I don’t see myself as an extraordinary person. I see myself as an ordinary person highlighting things many are afraid to share. We can all do something to make a difference. We can get involved by telling our stories, by demanding change.

  Someday, when I am gone, I hope my children will be proud of me. I hope they won’t remember me as their mom, the heroin addict. I want them to think of me as a person who loved them unconditionally, who worked to benefit my community, who saved lives. How will you be remembered? Instead of holding in our fears for our loved ones, instead of holding in our grief, we have a unique opportunity to create change. I hope you will join me by bringing your voice, your experiences, and your truth to the conversations and movements for a better world.

  PART THREE

  HEROIN ADDICTION & RECOVERY: WHAT YOU NEED TO KNOW

  WHAT IS HEROIN?

  To understand a heroin user, you must first begin to understand something about the drug that is controlling his or her life. Heroin is one in a variety of opioids, all of which are abusable with a little bit of determination. The general public is more familiar with prescription opiates such as OxyContin, Vicodin, Norco, morphine, Dilaudid, Percocet, and fentanyl. If you have had a medical procedure in the U.S., the chances are high that you have been prescribed one of these medications.

  Heroin is not so different from these prescription drugs. According to the National Institute on Drug Abuse (www.drugabuse.gov/publications/research-reports/heroin/letter-director), “Heroin is an illegal, highly addictive drug processed from morphine, a naturally occurring substance extracted from the seed pod of certain varieties of poppy plants. Once heroin enters the brain, it is converted to morphine and binds rapidly to opioid receptors.” Heroin fills the pleasure center of your brain, creating a feeling of euphoria. Depending on the way it is ingested, known as the route of administration, the onset of this feeling can be extremely intense, often referred to as a “rush.” In the worst-case scenario, the rush can overpower the systems of the body, slowing functioning to the point of an overdose. The breathing and heart rate slow down as death sets in from lack of oxygen. In the best-case scenario, a high from heroin can last most of the day. The user falls into a sleeplike state known as a “nod,” or in some cases, the user reports a burst of energy because the opiate temporarily medicates conditions such as anxiety and depression.

  The Drug Policy Alliance does an excellent job on its website of explaining the heroin we see here in the U.S. (www.drugpolicy.org/drug-facts/heroin-facts):

  Street heroin is rarely pure and may range from a white to dark brown powder of varying consistency. Such differences typically reflect the impurities remaining from the manufacturing process and/or the presence of additional substances. These “cuts” are often sugar, starch, powdered milk and occasionally other drugs, which are added to provide filler.

  In my case, I was using what is known as black tar heroin, a sticky substance manufactured in Mexico that is less potent than East Coast Powder, or ECP. Tar heroin is generally injected or smoked on foil, while ECP can be easily snorted. Tar heroin has the reputation of being full of impurities; ECP is considered more pure. I personally encountered street heroin cut with substances such as instant coffee. One of the only public health advantages of tar is that it cannot easily be cut with fentanyl, a synthetic opioid that caused the deaths of thousands of users when dealers hoping to boost profits added it to heroin to cause a more intense “rush.”

  Today, heroin is less expensive, easier to find, and more potent than when I was using it. An inexperienced user can easily spend less than the price of a mixed drink to get a high so powerful it can be fatal. Add in a few drinks or a Xanax or Valium, and it is easy to spend less than you would on popcorn and a movie to have a whole night of intense sedation. Because of what is known as “tolerance,” heroin creates diminishing returns. A user who may have been satisfied with one dose every eight to twelve hours may eventually find that the same dose doesn’t last, creating unpleasant withdrawal symptoms. The more a person uses, the more he or she needs to use on a daily basis to achieve the same high. Eventually, it can cost hundreds of dollars per day to support a habit. At the peak of my using, I was spending $100 a day on drugs. While the vast majority of opioid users work or use legal means to pay for their drugs, some may turn to the street economy to support their addiction. This may include small-time dealing, theft, credit card fraud, and sex work. Because of the illegal nature of the heroin, it has a tendency to lure users away from mainstream economic activity.

  Not all people who try heroin will become addicted, but it certainly is a slippery slope. There are many factors that influence who becomes addicted, such as family background, societal pressures, a history of trauma, and issues with mental illness. There are also many users who report none of these issues. Experimentation can lead to periods of abuse. If you suspect a friend or loved one is abusing heroin, my best advice is to listen without judgment. The stigma associated with heroin use creates a sense of isolation. Creating a sense of connection is a great bridge toward recovery. While it may be hard not to offer advice, early conversations can reaffirm your care and concern for this person. In the end, a user is just a person worthy of love and compassion who needs to be reassured there is still another way to live.

  HIDDEN IN PLAIN SIGHT

  It is painful enough to have a loved one addicted to any drug. That pain can be compounded when the drug is heroin. Heroin addiction does not just drive users into isolation. It can also push them into a circle of fear with little support from the community at large. My mother was forced to deal with her pain privately. In a place like West Chester, Ohio, in the ’90s, heroin use would have been unfathomable to people in her social circle. People certainly knew I was missing from family events. My mother was unable to brag about any accomplishments of mine. During one period, she was only able to track my whereabouts through hospital bills and collect calls from jail.

  According to the National Survey on Drug Use and Health (NSDUH) conducted by the Substance Abuse and Mental Health Services Administration, in 2012 an estimated 23.1 million Americans (8.9 percent) needed treatment for a problem related to drugs or alcohol, but only about 2.5 million people (1 percent) received treatment at a specialty facility. This means that the vast majority of users who are trying to get clean are dealing with detoxification and early recovery only with the aid of loved ones. This puts a huge burden on the caregivers when, in the case of heroin in particular, a treatment failure can lead to death.

  Heroin users go through an intense three- to five-day withdrawal process during which they can become incapacitated. Symptoms may include abdominal cramping, diarrhea, restless legs, nausea, vomiting, anxiety, and sleeplessness. Family members may
be called on to do everything from mortgaging their home to pay for treatment to hiding their adult children from drug dealers. The desperate situation is compounded by the sheer lack of information available on the topic. How could this be my child? Where did my brother get heroin? How could I have missed the signs?

  After the short-term detox process, there can be a period of extended depression and hopelessness known as PAWS (post-acute withdrawal syndrome). When someone contacts me for help, I attempt to break all the medical explanations down to simple terms: When a person is using heroin, a great deal of his happy chemicals are coming from an outside source. Over time, the body slows production of its own happy chemicals in reaction to this outside source. When a user stops taking the outside source, it takes time for the body to build that production back up. Kicking heroin makes a user feel like her lover has left her and her best friend has died at the same time. The end of heroin use really feels like the death of a relationship. Your life has become consumed with this drug. It takes time to feel better, to feel anything. This can be difficult for loved ones who can interpret depression or anxiety as a lack of gratitude, motivation, or desire to stop using. The user may not have the ability, in the early stages, to feel many emotions other than primal ones, such as anger. Give it time.

  In the past eighty years, AA, Alcoholic’s Anonymous, has made tremendous headway in normalizing the way people think about problem drinking. There has not been such a movement for the heroin user. But in growing numbers, families are creating their own support networks. Many of these were created as a way of making the death of a loved one have some kind of meaning. Social media is full of open and closed support groups with grieving families seeking someone who understands their experience. Groups like Northern Kentucky Hates Heroin (http://nkyhatesheroin.com) and the Davis Direction Foundation (http://davisdirectionfoundation.org) provide a place where parents can share information, receive support, and find resources. In addition to providing support for individuals, these groups have been instrumental in influencing state-level policies that impact users. Mothers and fathers are no longer afraid to sit on the stairs of their state capitol buildings or outside their congressperson’s office, clutching a photo of their son or daughter who died as a result of an overdose. Policies are being changed, laws are being enacted, and the veil of silence is being broken.