Responses for Development Meeting on Opioid Use Disorder(OUD) on April 17th, hosted in collaboration with National Institute of Drug Abuse (NIDA).

Responses

The following are my remarks and comments for the meeting. 

1.    a)     As a family member and an individual who works with people that have had or have an active opioid substance use disorder I have been informed of the impact of opioid withdrawal as well as use and how it causes nausea, diarrhea, cramping and other symptoms.  An anecdote I have is from an person who told me that constipation had set in.  In an attempt to hide their addiction they kept up appearances by going to family events where there was a lot of eating and drinking.  This led to unpleasant circumstances.  Apparently the individual also began to lose weight because they were still hungry but their body was not evacuating normally which led them to expel food through vomiting much as if they were suffering from bulimia.

    b)     The effects of opioid withdrawal I have become familiar with include chills, painful cramping, confusion, intense desire and craving for the drug, nervous behavior and incoherent communications focused on securing the drug.  Anger and confused thinking also were reported

    c)     The effects of opioid cravings that I have been informed of include physical ailments such as cramping and pain and also an intense mental desire to secure the drug at all costs.  Other people, food, drink, money and responsibilities are all put aside as an intense attention is paid to the method or methods for securing the drug.

    d)    Reports that I have had include individuals reduced to living in their cars without proper food.  They reported having no contact with any other people than their drug dealer.  Often these drug dealers would not even be able to speak English which isolated the user even more.

    e)    The emotional effects I have witness include a sense of failure and hopelessness which is physically exhibited by listlessness and insecurity.  This leads to what appears to me to be isolation and a reluctance to seek out others with different experiences.

    f)     Some of the individuals are very angry or marked with an intense sense of fear.

2. I have seen individuals unable to hold jobs, conversations or pay attention to social situations for more than a short period of time.  On the best days these individuals have the drug they seek and are pacified.  When they do not have access to it marks the worst days and can lead to hunger, depravity, crime and violence in order to get it.

3. The individuals I have seen started out with a small amount of the drugs and progressed until it became overwhelming.  Finally dominating their life and behavior to such a point that they no longer resembled the persons they once were.

As I have seen some individuals recover some of them remain unsure of their recovery and acceptance by others.  Some seem unable even to trust themselves.  The stigma attached to the problem is bad enough when inflicted from the outside but when someone internalizes it the situation becomes more problematic that it might have been had not that attitude predominated.

4. I know of individuals who have died from overdose, been struck with brain damage, developed respiratory problems, liver problems and contracted viral diseases.  Their families have been marred or destroyed.  They have lost weight and self-respect.  I am concerned that without correcting this problem and healing them that this will spread and hurt and kill many more.

 Topic 2: Perspectives on current approaches to treatment

1.       I am not using these drugs myself.  I do know, however, that the drugs must, at first be administered very carefully or they may cause death themselves.  Once established it is important that the individuals

a)         I have seen individuals who have had their lives restored.  They have gone on to having families and rejoining their own human circle.  I have seen others that have used these drugs and then stopped using them and their fate can be falling back into addiction or death.

    b)     I have seen individuals even in the recovery process promulgate stigma about the drugs and offering up the mistaken idea that they individual has traded one addiction for another.  There is also a difficulty in the abstinence community that insists the body must be completely ‘clean’ in order to heal.  The entire idea set of ‘clean’ and ‘dirty’ is making the entire discussion and process murky – no pun intended.

As for the challenges getting the medicines.  Some of them are prohibitively costly.  They come with a burden that seems to be akin to ‘how can I every pay this back?’, ‘am I worthy’ and all sorts of other difficulties as well as battles over how family resources are spent.

Even if the money is available the drugs are not always available which necessitates the individual travelling or moving which can lead to further problems and isolation.

2. Some of the individuals I have been working with go to acupuncture sessions which seem to be lucrative for those offering them but not very effective for individuals with opioid use disorders.   What seems to be popular and useful is Yoga.  There are also a small number of individuals who rediscover their interests they had before they began their drug use and these individuals, to me, seem to seek and gain recovery more fully than some others.

3. I see that therapy and community involvement along with needed medications serve the best.

4. The individuals I see seem to put themselves at the mercy of the families or professional caregivers.  There is very little information provided about the various choices available and in general in Michigan there aren’t that many choices.  If you have money you can get the drugs and help to beat the addiction but even with money the lack of support, care and drugs to assist in getting away from the addiction and destructive life style can still lead to destruction or death.

5. Easing off of the drug with introduction of the individual into an environment which is safe, has interesting things to do and absolutely no access to the drugs that caused the problem.  There needs to be a way to build a purposeful life after this harrowing experience.

Advice to Test Participants :

My advice to anyone entering into a trial would be to be assured they were NOT getting a placebo and that they would be guaranteed the best in care as they worked through the trial and then be given the resources to complete their treatment and reentry into society regardless of the result of the trial.