HEROIN ACTION COALITION INTERVIEW QUESTIONS FOR DHMH:
On Medically Assisted Treatment (MAT), Methadone Maintenance (MM) & Long-Term Abstinence-Based Residential Treatment (ABRT)
Ø 1) Parent’s tell us that they do not want to see their child ‘high’ every day. However, research shows that about 28% – 33% of MM patients do not use other illicit drugs while in treatment (Flynn, et al. 2003; Cohen, et al., 2005) One can therefore deduce that 67% – 72% of MM patients DO USE other illicit drugs while in treatment. PARENT POV: For the parents of kids who are in “treatment” and still shooting dope, taking benzos, or chugging fifths of Vodka every night (as many parents have witnessed), they do not consider this “treatment” to be effective. To them, there is no difference between their kid shooting dope and their kid shooting dope while prescribed Suboxone or methadone –except that their criminal activity may have been reduced if they no longer have to steal, prostitute or pimp to avoid acute withdrawal symptoms. While reducing criminal activity may be a goal of the state, it is not the ultimate goal of the parent. From the perspective of these parents, their child is now able to obtain a steady supply of drugs from a different, albeit legitimate, dealer. Some parents justifiably conclude that their child’s free and steady drug supply, now “enables” him to remain high, because the dread of withdrawal is removed. Additionally, parents often hear their kids refer to their “free drugs” –paid for by insurance or Medicaid, while sitting around with friends at their parent’s kitchen table. How would you respond to these parents?
Ø 2) Conversely, for the 28% – 33% of kids who ARE NOT still seeking other illicit drugs, those parents report high satisfaction with MM. Parents tell us that they need better and more reliable data on the outcomes of different programs –which ones have high success rates (as defined by the child and the family) and which ones don’t. Is there any data to show what the differences are between these two groups –those that continue to exhibit drug seeking behaviors and those that do not? Are there any protective factors that come into play? Any differences in the treatment programs, as opposed to the person being treated?
Ø 3) Parents tell us that they want clear and precise information about ALL of the choices for their child in order to help their child choose which form of treatment is the best fit for him or her. Research tells us that about 67% of ABRT patients do not use other illicit drugs while in treatment (Cohen, et al., 2005). PARENT POV: For parents whose kids are in treatment and not using other illicit drugs –both the 33% of MM parents and the 67% of ABRT parents, they are likely observing that their child is functional for the first time in many years. For instance, it may be the first time that they have engaged in a normal conversation, or their mood is stable and they are pleasant, or they do not look like they are on the brink of death, or pawn-able household items do not go missing. In comparing these two groups of parents, there are simply more parents with better outcomes (the outcomes that are important to them) in the ABRT scenario than in the MAT scenario –34% more. Why do you fail to mention ABRT as a viable option in any presentation that you ever give in public or to policy makers? Do you feel that this omission gives policy makers the misconception that MAT is, or can be, the sole solution to the opioid epidemic, to the exclusion of ABRT?
Ø 4) Parents tell us they are concerned that there is no accountability for their kids who are still using illicit and dangerous substances “while in treatment”. The droves of drug-seeking kids still “using” while in “treatment” has given MAT (particularly MM) a ‘bad name’ –despite the fact that it has worked exceptionally well for the approximate third who are successfully using it as a harm reduction strategy and tapering off over time. This is not so much a problem with Methadone Maintenance, as much as it is a failure of MM providers to resolve the drug-using problem with their clients, and a failure of DHMH to hold them accountable for doing so. What should MAT treatment providers be doing to raise this percentage and to ensure that their patients are NOT using other illicit drugs while “in treatment”? What should DHMH be doing to ensure that providers are complying with these strategies?
Ø 5) Parents tell us they want their child to be happy, again. However, research shows that suicidal ideation is particularly high among MM patients (Hubbard, et al. 1997; Best, et al, 2009). Conversely, suicidal ideation is reduced by 41% – 47% among patients in ABRT, but not among MM patients (Hubbard, et al. 1997). PARENT POV: Some parents are understandably distraught when their child returns home after a 30-day rehab stint on a MAT prescription and is so chronically depressed that he or she can barely leave their room for months –much less find a job, return to school, or show any indication that they will ever function normally again. Parents who were at first relieved that their child was recovering from a Substance Use Disorder, now witness their child suffering from depression and anxiety, indicative of opiate use (legal or illicit), which did not dissipate, as expected, after they stopped “getting high”. This problem is intensified if they never receive any mental health counseling in their MAT program. How would you respond to these parents? Is there anything that MAT providers could or should be doing to lower this extremely high rate of dangerous symptomatic side effects associated with opiate maintenance? What role should DHMH play in addressing this issue?
Ø 6) Parents tell us that they want their child to function normally and achieve independence. However, MM has been linked to impaired cognitive function in a 2013 systematic review of 35 published scientific studies (Wang, et al., 2013). MM has been linked to neuropsychological deficits (Davis, et al., 2002; Mintzer, et al., 2004). MM has been linked to slower cognitive processing speeds, lower visual-spatial attention spans and lower cognitive flexibility, as well as less accuracy on working memory and analogical reasoning than ABRT (Verdejo, et al., 2005). MM has been linked to lower scores on emotion perception and social inference than ABRT (McDonald, et al., 2012). Increases in full-time employment correlate with patients remaining in ABRT for 6 months, but not among MM patients (Hubbard, et al. 1997). ABRT patients’ cognitive brain functioning may eventually be restored (Davis, et al., 2002; Mintzer, et al., 2004) PARENT POV: Parents with kids maintained on opiates often report that their child still has trouble with basic functioning –particularly in areas managed by the frontal cortex –prioritizing, remembering, organizing, coping, etc. Many parents are distressed to find that even after their son or daughter has stopped using illicit opiates –it is tragically difficult for them to figure out how to perform basic life skills –obtain food, budget finances, make and keep appointments, get a job, etc. Both the data, as well as anecdotal evidence, indicate that the brain may heal itself to the point where it is capable of functioning on par with brains that have never been on opiates after two years of abstinence. Ultimately, this is what parents wish for their child. Kids talk about the “fog” that doesn’t begin to lift for several months after abstaining from opiates –and that isn’t fully gone for about two years. Parents do not want to raise kids who cannot figure out how to live successfully and independently. It is very common for parents whose kids are maintained on opiates to notice the same “cognitive deficits” reported consistently throughout the data. Their hope is that their child’s brain will return to what it once was, prior to the introduction of opiates. Data seems to show that two years of abstinence seems to be the key to achieving this goal. How would you respond to this data?
Ø 7) Parents want their child to have high self-esteem and high self-worth –and to one day fall in love, get married, and have grandchildren. However, MM has been linked to suppressed testosterone levels associated with erectile dysfunction, fatigue, and mood disturbances (McMaster University, 2014). PARENT POV: Boys have reported that they have trouble performing sexually when they are using –and this problem persists when they are on opiate maintenance (methadone in particular). This is a huge big deal for young adult males. Some are not aware that it is caused by their continued opiate use, particularly if the methadone clinic fails to tell them –and they think that there is something permanently wrong with them –that they are damaged for life. This is highly stressful for them and thus for their parents as well. When they discover that this problem is related to MAT, they feel that their provider was deceptive in not conveying this information. This creates distrust toward providers in general. How would you respond to this data? Do you feel that the addiction field in general needs to be more forthcoming about presenting ALL treatment options and the related side effects?
Ø 8) Parents want to ensure that their kids have choice to pursue the path toward recovery that works for them. It is not uncommon for young transition age adults to be referred to methadone clinics without an explanation of options. Once they are enrolled for a short period and find it is not working for them due to any number of factors –inability to get to the provider every day, IOP or PHP (if offered) interferes with a job, perception that they are still addicted –they discover they are trapped in this treatment modality and are unable to switch to ABRT. This is due to the fact that methadone withdrawal is one of the most brutally painful and long-lasting of any other opiate, and so detox facilities will not accept MM clients who are taking more than 30 mg/day, because insurance will not pay for the prolonged detox phase. The young patient and his family may feel justifiably outraged to discover that they no longer have the option to CHOOSE ABRT, and that they were never given that choice in the first place. For these families, MM has come to be known as “liquid prison”. Kids in this situation have been known to wean themselves off the methadone with heroin or any other illicitly obtained opiate, and then enter a detox program after the methadone is sufficiently out of their system. In this way, they use heroin as a “harm reduction strategy” for their methadone dependence. Families feel that our treatment system should preserve choice and provide treatment based on medical necessity, rather than on insurance criteria. Are there any medically-driven criteria that would explain why an individual is able to detox off ALL opiates, other than methadone, in a residential detox facility? Do you feel that this is a failure of DHMH to mandate medically-driven standards for entry to treatment and enforce them, as opposed to allowing insurance-driven standards to prevail?
Ø 9) Parents gauge recovery on more than just their child’s drug use. Best-Practice treatment suggests that an individual with a Substance Use Disorder (SUD) is not healed until they are leading a “normal” life –stable housing, job or school, positive family relationships, stable mental and emotional health, etc. Therefore, a treatment program should either provide support services designed to attain these outcome measures or link them to outside providers who provide these services. Some methadone clinics are notorious for dosing clients every morning and never providing even an hour of counseling or therapy, ever. Parents who were expecting to see progress toward self-sustaining independent living are dismayed to find that even though their child is now receiving “treatment”, they are not receiving even the most minimal assistance with recovering their “lost lives”. In fact, the only thing that has changed is that their child is receiving a “new drug” in place of the “old drug”. Hence, the perceptions that MAT simply “exchanges one drug for another” and replaces one drug dealer with another (the clinic is viewed as the new “for-profit” dealer). This scenario obviously tarnishes the reputations of reputable MAT prescribers who are providing very valuable and beneficial therapy to their clients and linking them to services appropriate to their needs. What would you say to these parents? How can this gap in the continuum of care for recovery services best be addressed? What should the role of DHMH be in ensuring that our kids get the assistance they need to get back on their feet after suffering for years with a grave and debilitating mental health disorder –SUD, which robbed them of their capacity to develop normally and progress alongside their same-age peers?
Ø 10) Parents want to ensure that their child is in the optimal environment, conducive to their recovery. Recent efforts to force traditionally Abstinence-Based Residential Halfway Houses to accept MAT clients by tying financial incentives to programs that accept both has been viewed by many consumers, treatment providers, and family members as counter-productive. They argue that these policy makers have little comprehension about what it is like to suffer with an opiate use disorder. The reasons why mixing and matching doesn’t always work are obvious to those who understand the ABRT path to recovery.
Picture yourself in the following scenario: You are craving drugs and you are struggling every day to overcome those cravings that you are told will eventually lessen with time. You talk to your buddies, your therapist, your support team, your sponsor, YOUR HOUSEMATES about your cravings –they support you and distract you and assure you that the cravings will eventually go away –particularly, if you avoid “triggers”. Triggers are best explained by recalling the experiments of a scientist named Pavlov who rang a bell every time he fed his dog. After a while, when he rang the bell, the dog’s brain signaled every cell in the dog’s body that it was time to eat. As a result, the dog’s bodily systems prepared to receive food –the dog salivated, his stomach rumbled, he walked to his dish and whined, etc. ABRT works by encouraging clients to avoid triggers –people, places, smells, sights, DRUGS. Eventually, as your brain relearns different habits, by practicing coping skills over time and with support, you can deal with these triggers so that every cell in your body is not screaming at you to pick up and use. This form of “talk therapy and trigger avoidance” treatment is undermined when someone taking a drug –talking about taking a drug –exhibiting symptoms of being on the drug, is your roommate. This is the exact scenario that ABRT practitioners tell their patients to avoid. It is a situation that may promote thoughts about using that lead you back to using. It can be very stressful for an ABRT patient.
When a MM patient is living with a houseful of ABRT patients who are all talking about coping with their cravings and triggers –and the MAT patient is talking about going to get his next dose, perhaps nodding out in group, or is obviously high after “adjusting” his methadone or Suboxone to a higher dose (because he still has cravings), and is unable to share his coping skills for dealing with cravings and triggers in group because he supposedly has none, this is justifiably upsetting to his housemates in an ABRT program. Individuals who have CHOSEN ABRT and are struggling very hard to maintain abstinence are horrified that policy makers have just introduced a major “trigger” in the ONE place where they felt safe from triggers –their home. They conclude that policy makers have no dreaming idea what they are going through. Insult is added to injury when they are then accused of being “prejudiced” against MAT patients for simply attempting to protect their own personal path to recovery. Their parents are understandably upset –they finally have their child on the path to recovery and it is jeopardized by policy makers who do not understand that MAT (particularly MM) and ABRT are two totally different programs with two totally different protocols that can and do undermine each other when mixed within the same program. Forcing ABRT programs to accept MAT patients is akin to sending a loudly singing Baptist to a silent Quaker service simply because they are both “religious” services –and then expecting the integrity of the experience to remain intact for its participants. It just doesn’t work that way –and consequently, parents feel that their child’s sobriety is undermined by uninformed, inappropriate and uncompassionate policy. How would you respond to these parents? Do you feel that this is simply a problem with capacity –there are not enough halfway houses to meet the need –and were there more supportive housing opportunities, these two groups would have separate but equal recovery programs –specifically designed to address their different needs and issues?
Ø 11) When a transition-age adult relapses after a long period of remission, parents want to see their child given options, not pressured and triggered by providers to become opiate dependent once again. Patients who relapse after maintaining abstinence for a lengthy period of time often feel that they must return to detox to prevent a short-term relapse (a couple days) from becoming a full blown addiction. Many detox providers insist that their clients use MAT while in their program (30 days) and then discharge them to an outpatient MAT provider. Thus, a young adult who has a few day relapse after two years in remission, is now re-addicted to opiates by a provider who triggers him repeatedly throughout the day by attempting to convince him to return to an opiate-maintained regimen. Thus, the kid returns home after 30 days, on a 12 mg. daily dose of Suboxone or a 90 mg. daily dose of methadone, and a several year taper schedule. It is doubly heartbreaking for parents if they return to illicit opiate use when they undergo withdrawals from the legal opiates because they can’t find an affordable outpatient provider. What do you feel can be done to ensure that providers and policy makers respect and support patient choice? –and to invite and respect the input of family members?
Ø 12) Parents are somewhat reluctant to trust the medical community once again. It is common knowledge that 90% of families were initiated into this nightmare when their kids used prescription painkillers –which the FDA, the pharmaceutical industry, and the medical community assured them, were safe. They realize that it is this same pharmaceutical/medical community, spending millions on lobbying to protect profit margins, that is now promoting MAT. Many parents firmly believe that this for-profit community has once again convinced uncaring or uneducated policy makers that MAT is the ONLY reliable treatment option. Despite more than fifty years of research showing two distinct and successful paths to recovery –ABRT AND MAT, it appears to many parents that policy makers are choosing to advance the cheapest and most profitable option at the expense of the more expensive option –or from the parent’s point of view, at the expense of their child’s life. How would you address parent perception regarding the “for-profit” medical / pharmaceutical community? Do you feel that greater DHMH oversight and the tracking of performance measures for ALL providers would give tax payers a better idea about what is working and what is not? Do you feel that providers should be required to be more transparent about their cost and profit margins? Do you feel that performance measure data is necessary so that tax payers are able to make well educated decisions on exactly where to spend limited public funding?
Ø 13) What do you think about the following Summary? Conclusion? Solutions?
SUMMARY: In essence, parents are not AGAINST the use of methadone or Suboxone as a treatment option. Parents are against:
· MAT providers who either fail to drug test their kids or who continue to provide them with their dose of methadone or their Suboxone prescription even when they are using other dangerous illicit drugs;
· MAT providers and policy makers who have not been honest or transparent about the side effects associated with MAT;
· MAT providers who do not address mental health issues, particularly those which are known to be associated with opiate maintenance, such as depression, anxiety and suicide;
· MAT providers who give no indication that they ever plan to taper their patient off of opiates and their child is prescribed ever-increasing doses;
· MAT providers who do not provide effective case management –failing to assess the client’s full array of needs and provide referrals to appropriate services;
· MAT providers who fail to warn their clients that they will not be able to switch to an opiate detox / ABRT path to recovery if they choose MAT, as well as the reasons why;
· MAT providers who spend approximately six minutes per day with a client and call this “treatment”;
· Detox providers who are insistent that they know what’s best for their clients, regardless of the client’s own experiences and history, and insist that their client resumes MAT, after a prolonged and mostly successful period of abstinence;
· Policy makers who undermine the recovery of ABRT patients by pressuring ABRT programs to accept MAT patients because that seems like an easier solution than to create enough halfway house programs to support BOTH paths to recovery equally;
· Health Department staff that steer patients into their own county-funded programs, regardless of whether it is the “best fit” for a patient, and without providing information about all of the available statewide options for which the patient may be eligible.
CONCLUSION: Because parents do not have a voice at the policy table (if we did, all of the points I have made above would already have been heard and considered), and we are rarely asked to offer feedback about what we are experiencing, how policy is working for us, or how we are impacted, and during the few times when we ARE asked –we know that what we say must be compressed into only two minutes, then I am sure it sounds to policy makers like many parents are against a form of treatment that studies show IS highly effective in many cases. It appears to policy makers that many consumers and family members are simply uneducated and biased. However, there may be another logical conclusion. Is it possible that parents do not need to be educated on the merits of MAT as much as DHMH needs to provide stronger leadership and implement performance measures and oversight protocols that hold the providers in our state’s treatment system accountable for providing good treatment outcomes –basically, for doing a good job? Is it possible that what we need is for policy makers and treatment providers to include us –consumers and their family members, in discussions that impact our lives and the lives of our children?
This impasse in creating an environment of collaboration, understanding, and transparency between families, policy makers, and treatment providers has been costly –our children continue to die and we continue to suffer immeasurably because of it. Keeping our kids alive may not be what we do for work or to provide an income for ourselves –but our experiences and our insights are no less valuable than those who are currently paid to do so. We need and deserve a seat at the policy table because we have highly valuable information that treatment providers and policy makers need if they are to solve the opiate addiction and overdose crisis facing our families and communities across Maryland.
· Hold a stakeholder forum for parents and providers to allow open honest dialog about the problems that parents are observing with MAT and brainstorm solutions with providers. A strategy which respects, rather than rejects, the insights and experiences of parents would eliminate conflict.
· Support performance measures (legislation introduced by Senator Nathan-Pulliam). MAT providers who provide good treatment and have good outcomes should be rewarded, while profit-only-driven practitioners should be forced to change their practices or close.
· Promote evidence-based best-practice treatments and encourage providers to use them by providing incentives.
· Provide guidance to providers regarding HIPAA, and the right of patients to utilize it. HIPAA does not say, “Do not offer a release to clients unless they ask for one”. It does not say, “Do not explain what a release is to transition age kids and their parents”. It does not say, “Do not openly and honestly discuss the value of having an adult who cares about your well-being on your treatment and discharge planning team while your brain is in a fog”. It does not say, “Exclude parents from having any contact with their kid during their treatment experience.” Parents are often the only ones who can truly hold the transition age child accountable for relaying accurate information to a provider, because parents have often served as case managers for their children for years and know their history. Most kids will sign a release if it is offered. Most parents do not know they exist.
· Conduct a thorough literature search of the outcomes of studies and use an unbiased representative to report the findings. Do not rely on individuals from the medical community –who obviously stand to profit from promoting MAT, to advocate for evidence-based best-practice treatment. Parents are reluctant to believe the medical community and are frustrated that policy makers so readily do. From a parent’s POV, for-profit MAT docs, wearing the hat of unbiased DHMH consultants, look like wolves in sheep’s clothing. Parents overwhelmingly view this as a conflict of interest.
Any discussion that fails to address these very real issues will continue to alienate many parents by invalidating their perceptions and ignoring their concerns. This is not a debate about whether methadone or ABRT is the most effective. Both have been proven to be life-saving options for so many people. It is a battle to maintain informed choice, to hold treatment providers accountable for providing effective outcomes, and to motivate policy makers to create an open, honest, transparent, and collaborative system of care that works for its consumers.