February 1, 2015
Dear Maryland Delegate, Health & Government Operations Committee Member:
I was fortunate to have the opportunity to attend both the Full Committee Briefing on Drug Overdose Prevention on January 27th as well as the Update on Behavioral Health Integration Stakeholder Workgroup on January 29th. I wanted to clarify a few of the points that were made and provide you with the perspective of the family members of those who are struggling with an opiate use disorder.
Del. Krebs asked Dr. Olsen if being on methadone or Suboxone means that you are “abstinent” and Dr. Olsen replied, “Yes”. However, one glance at the plethora of science-based, federally or university funded studies from the past fifty years, indicates that this is simply not true. Individuals choosing a Medically Assisted Treatment (MAT) path to recovery are prescribed one opiate, such as Suboxone or methadone to replace other opiates, such as heroin or OxyContin. This is a harm reduction model that allows the patient to either slowly taper off of their physical dependence on opiates over time, or maintains them at their current level of use while eliminating their need to commit crimes in order to maintain their habit. Having stable access to the replacement drug allows them to focus on replacing socially maladaptive behaviors, like stealing or prostitution, with more acceptable ones –getting a job, finding stable housing, etc. Individuals choosing an abstinence-based path to recovery are likely to use a replacement opiate, such as Suboxone, during the first few weeks of detox when their physical withdrawal symptoms are most severe. Following the detox phase, the individual practices abstinence from using any drugs –including replacement opiates, such as Suboxone or methadone. High success rates with this latter option correlate with length of time in a residential setting which provides a therapeutic or supported environment conducive to promoting abstinence.
An abundance of well-regarded studies support the effectiveness of both of these options, as well as other less popular, yet promising, alternatives. While individuals and their families may staunchly argue that one path to recovery is better than another, advocates believe that both options must be equally available and that our policy makers should not support any one option over another by making one more accessible, more affordable, or more allowable than any other . Recent DHMH policy allows for a patient to apply for grant funding to cover their first month in a halfway or sober-living house that supports MAT patients, but does not provide equivalent funding for those seeking an abstinence-based program.
· Kathy Rebbert-Franklin reported the number of opiate overdose deaths based on “medical examiner criteria”. However, family members are acutely aware that some death certificates state “heart failure” or “respiratory failure” without indicating that the cause was drug-induced. Some parents have been known to advocate for these semantical considerations due to the huge stigma attached to overdose death. It is also well-known to family members that many suicides are a result of the severe anxiety and depression accompanied with opiate use disorder. These deaths, as well as the many car crash fatalities resulting from driving while under the influence of opiates, do not get reported as opiate-related deaths. Despite these omissions, family members are well aware that deaths resulting from opiate use are much higher than currently reported by DHMH and county health departments. Local communities tabulate death rates by how many funerals they attend, and have found that they surpass the statistics provided by local health departments.
Kathy Rebbert-Franklin reported that 59% of those who die as a result of opiate overdose had at least one past admission to the ER for a non-fatal overdose. She described a pilot program where peer support workers engage with overdose survival patients in hospital rooms in order to motivate them to seek treatment. Unfortunately, this has only been rolled out in two hospitals in the entire state. Addictions Connections Resource (ACR), a family peer support organization, has already been “piloting” this program for years. ACR’s family peer support staff members are currently paid through the Harford County Health Department to implement the program. Many family peer support volunteers in other jurisdictions have contacted local hospitals in an attempt to provide these same services but have been turned down by the hospital for various reasons. DHMH has so far failed to provide any type of support to facilitate these and other worthwhile community-based programs, which family peer support organizations, like Heroin Action Coalition, would be all too happy to implement.
· In response to Del. Hill’s question as to whether there are “open spaces” for overdose victim’s to enter treatment upon waking up in a hospital room after a near fatal overdose –the answer is NO. Parents are mystified by Kathy Rebbert-Franklin’s response that she “cannot say definitively”. Heroin Action Coalition’s Treatment Navigation volunteers assist parents in their local communities with locating treatment for adolescent and transition-age children. Typically, our children remain on waiting lists, depending on their jurisdiction and ability to pay, for several days to 6 or 7 weeks. During that wait time, some of our children have died. We are disappointed that although we have relentlessly and repeatedly reported this horrific and heart-wrenching problem to Ms. Rebbert-Franklin, that she continues to report that she “cannot say definitively” that there is a severe shortage of beds and a serious treatment capacity issue in our state. Parents with better health insurance plans or private funding sources often send their children to better treatment systems in other states.
· Re: The Naloxone initiative, Kathy Rebbert-Franklin reported that DHMH has trained 4500 individuals on how to use Naloxone to reverse an opiate overdose. However, she makes no distinction between how many of them are FIRST responders (those that have the FIRST contact with the overdose victim) and how many are SECOND responders (those that are called by the FIRST responders to provide assistance, such as EMTs and police). The initial Naloxone bill was introduced by Senator Klausmeier in response to a mother’s request to sponsor the legislation after watching helplessly as her son died in her lap, while waiting for the EMTs / police to arrive at her house after calling for help. It was initially intended for family members and friends of opiate users to have access to this life-saving drug, so that they could keep their loved one alive until the second responders –the EMTs, arrived to provide medical assistance. In some counties, the funding that was initially earmarked to train these FIRST responders has been diverted to train SECOND responders, presumably because it is easier to locate them and deliver the training to them. Heroin Action Coalition volunteers have done their best to see that family members and friends receive training, despite access barriers that persist in many local jurisdictions. We have repeatedly requested that DHMH remove these barriers and our efforts have met with sparse acknowledgment that our concerns are even valid. One of our biggest concerns is that DHMH personnel continue to be confused over the distinction between FIRST responders and SECOND responders, often referring to EMTs and police as “FIRST responders”. Family members know that there is often as much as 30 to 60 minutes between the time that FIRST responders call the SECOND responders and the time that they actually arrive on the scene. It is within this length of time that many patients succumb to death, and it is within this time that Naloxone could have been used to save their life, had FIRST responders had access to it.
Although Kathy Rebbert-Franklin reports that county health departments “have strong connections to the community”, families consistently report otherwise. For years, family peer support advocates have reported that county health officials are often unwilling to collaborate with grassroots community advocates on any initiatives, or investigate valid complaints against for-profit treatment providers, or include them at the policy table, or even acknowledge them as valid stakeholders. Family members often have valuable insights into which initiatives would make a real and positive difference in their lives. Some communities have gone so far as to write complaints and sign petitions, complaining that family advocates have been excluded from arenas where stakeholder input is actually required under DHMH grant objectives or formal legislative directives, and have sent these complaints to Ms. Rebbert-Franklin. She has simply ignored or failed to address this communication in any meaningful way.
· Furthermore, Kathy Rebbert- Franklin reports that local health departments have been “getting the word out to communities” about DHMH’s “statewide educational campaign”. This is simply not true. Grassroots advocates, such as those working for Heroin Action Coalition, have created awareness in local communities through an extensive network of social media sites, awareness events, and email distribution lists that local Health Departments simply cannot match. Yet, rather than utilizing our already robust communication networks, they elect to waste tax payer dollars to reinvent the wheel –and often poorly at that. In fact, when DHMH launched their 2-1-1 campaign, grassroots advocates at Heroin Action Coalition found that 2-1-1 call takers were providing false and misleading information to family members. Family members seeking information on locating detox services for a daily use intravenous heroin user were provided with a list of resources that included halfway houses without a detox level of care, hospitals without detox programs, and unregulated Christian-based recovery programs that do not provide those services either. We had to “get the word out” to communities that the campaign launched by our health departments simply did not work, and then had to argue for months with DHMH representatives, including Kathy Rebbert-Franklin and Gayle Jordan-Randolph, before they were willing to acknowledge that callers were receiving wrong information.
· Family advocates at Heroin Action Coalition are well aware that the County Education Departments in most local jurisdictions have been exceedingly reluctant to initiate programs, participate in awareness campaigns, collaborate with community advocates, or even acknowledge that a drug problem exists within schools, despite an enormous amount of evidence to the contrary. We are deeply disappointed that Kathy Rebbert-Franklin’s response to Del. Pena-Melnyk’s question regarding school outreach was that she had “sent brochures”. Family advocates are quite sure that many of those brochures, paid for with our tax dollars, ended up in trash cans or storage bins, and that a much more pro-active approach is required before action will be taken.
· Kathy Rebbert-Franklin informed The Committee that health departments “are the conduit between the consumer and treatment” and that “the consumer must be assessed” by the health department. However, this is simply not true. Individuals, who are using opiates daily, particularly intravenously, do not need to use the health department as a “middle man” to enter treatment. All treatment providers who provide detox services in the state of Maryland, will screen new patients over the phone and then provide the assessment on the day a bed becomes available and the patient is sitting in their office waiting to enter. The assessments are actually a requirement of insurance companies and other payers. The current system streamlines the admission process and reduces the time, energy, and effort that the prospective patient with a severely debilitating mental health disorder must expend in order to access treatment. Family navigation volunteers at Heroin Action Coalition work with families to further facilitate this process –by calling every provider in the state to determine where the next available bed is, assisting patients in getting on wait lists, providing them with support when they are on wait lists, answering their questions about what to expect while in treatment, matching them with a treatment option which accepts their payment method, etc. I am dismayed to hear that Ms. Rebbert-Franklin remains unaware of how families access treatment services in her state, even though I have explained the process repeatedly.
· Kathy Rebbert-Franklin reported that SUD family advocates participated on the Integration Workgroup which met this past summer. I attended every workgroup session, either in person or by telephone, and I can definitively state that there was not one voice at that table representing the perspective of family members caring for someone with a substance use disorder (SUD). I repeatedly and consistently requested SUD family representation at the workgroup and was repeatedly and consistently denied.
· Finally, family advocates just do not support Ms. Rebbert-Franklin’s contention that DHMH has been “intervening in what works best as fast as possible” or that “the state has been extremely pro-active”. We are seeking the support of legislators to hold DHMH accountable for ensuring that they do intervene in “what works best as fast as possible” and that our state follows the measures that other “extremely pro-active” states have already implemented to combat this healthcare crisis before our children continue to be buried at the unprecedented rate at which they currently are. We are desperately seeking your understanding that this is NOT being done by those that would claim it is.
I hope I have helped to clarify the perspective of family members and have effectively voiced our continued frustration over our attempts to collaborate with DHMH in developing action steps that will help to save the lives of our children.
Please feel free to contact me or one of my colleagues at Heroin Action Coalition if you require further information. We would be more than happy to provide a panel of family peer support advocates from various counties to answer any questions you have regarding our experiences and insights surrounding opiate use disorder, overdose deaths, and the current healthcare crisis impacting every community across our state.
Lisa Lowe, Director
Heroin Action Coalition