Tuesday, February 24, 2015

Shame, Injustice Separate Addiction, Other Diseases

This was the title given to the Opinion article that was printed in The Enquirer on February 21st.  Due to space constraints my article was edited for the paper.  Below is the unedited  version that, while lengthy, echoes much of what was heard at the 2015 Regional Opiate Summit that was held yesterday and today.   Please consider responding to the 'Call to action' that is found at the end of the article.

Amidst the conversations about the heroin epidemic, there have been more than a few varying viewpoints.  Some have chosen to lay blame at the feet of our legislators for their inability to pass legislation in 2014.  Others have commented that this is a public health issue and belongs outside the realm of our legislative body.  How did it happen that the treatment of a chronic, relapsing brain disease was ever placed in the hands of lawmakers?  In order to have a comprehensive understanding of, among other related topics, the evolution of addiction treatment to criminalization of the disease, William L. White’s 390 full-page book might be a good place to start.  Slaying the Dragon, The History of Addiction Treatment and Recovery in America is the culmination of 10 years of extensive research conducted by this nationally recognized author and recovery advocate.   To sum up in this article his work on how the transition between these two paradigms occurred would not only be impossible, but presumptuous to even attempt such a feat.   So, let’s leave it to William L. White in some of his closing remarks,  The meager results of our best efforts — along with our history of doing harm in the name of good — calls for us to approach each client, family and community with respect, humility, and a devotion to the ultimate principle of ethical practice, ‘First, do no harm’.”

Has the intention ever been to do harm?   No, it has been a matter of lack of education about the disease of addiction.  Why has there been such depravity?  That can be summed up in 3 words – shame, stigma and discrimination.  Those three words have deprived people who have this disease from accessing medical treatment for decades, or more accurately centuries.  The treatment that has been meted out is not based on research or best practices but rather on philosophical beliefs or prejudices about what is or is not appropriate for a person who is addicted, regardless of other mitigating factors.   No other disease, except perhaps mental illness, has endured such injustice.  Any other disease is treated according to what has been established as the best standard of care, care that is individualized.  People who have the disease of addiction have been mandated to the same treatment regardless of whether or not it is appropriate.   Then, if the treatment proves unsuccessful, somehow it becomes the failure of the person who received the treatment rather than those who failed to correctly assess that person’s needs and treat accordingly. 

What if other chronic illnesses were treated in such a system as we have created for addiction?  Dr. Tom McLellan poses a similar question, “Imagine if we began to treat diabetes in a system such as we have designed for addiction.”  (Dr. Tom McLellan: Addiction and Segregation)  

Conversely, imagine if we treated addiction in the same system of care as we have created for diabetes, or hypertension, or COPD, or cancer?  There would specialists knowledgeable about the disease and the treatment that would be most likely to restore health.   There would be not one specialist but several to choose from so that access would be more readily available.  Treatment would be individualized.  The patient would be deemed worthy of an appointment in a primary care setting prior to a crisis situation.  There would be follow up appointments and periodic assessments about whether or not the course of treatment was effective.   If in fact the treatment was not working, there would be adjustments made, not dismissal from treatment.  How long the treatment lasted would be determined by the physician and the patient rather than a third party who decides that time is up on a treatment even though the patient is recovering and could benefit from continued care.  Incarceration would not be a prerequisite for treatment because in this system the ambulance would be ‘parked at the top rather than the bottom of the cliff’. 

If there were new proven methods of treatment for any of these and other chronic diseases, would there be a moment’s hesitation in utilizing them?  However,   skepticism abounds when it comes to the treatment of addiction often veiled in an unwarranted reticence of acceptance based on opinion and not fact.  There have been many years of not knowing what best practices are for treating this disease.  We know more now.  When we know better, we can do better.    To do anything less is unethical.

What we know is that there are methods of treatment that work for many chronic illnesses, such as the disease of addiction.    To stop treating any illness, including addiction, because there is a casualty would be criminal.  For all other chronic illnesses, casualties serve to inform medical professionals about the efficacy of medications and the critical need for research and the possibility of improved treatment options.   The response would be life saving and life restoring rather than a moratorium on the value of treatment and the people who need it. 

Right now the Kentucky Legislature is in the midst of deliberations on the best way to address the heroin epidemic.   Now is the time to let your voice be heard.   Now is the time to advocate for your loved ones. Now is the time to let your legislators know that addiction needs and deserves to be treated as any other chronic, progressive potentially fatal illness. 

Your advocacy efforts can take many forms.    It can be done through the Kentucky Legislative website, www.lrc.ky.gov where legislators are listed according to counties and emails and addresses are available for letters.  A quick call can be made to the Legislative Toll-Free Message Line at 1-800-372-7181 where a courteous person will take your message and send it directly to the appropriate person or legislative body.   Put simply, advocacy is about talking – talking about this public health issue at every opportunity and making those opportunities often. 

Now is the time to break the silence, to stare down the shame, stigma and discrimination. 

Now is the time because by our silence, we will be defined and the epidemic will remain undefeated. 
Thank you for your advocacy,


Tuesday, February 17, 2015

The Unwritten Rule Book

Once again I am making an attempt to 'blog'.  After all, it's only been a couple of years or so since the last post.  Since that time, many of my friends have encouraged me to do the thing which has served me well in some situations and maybe not so much in others.  Casey said I did too much of it and that's 'talk'.

So, to my followers, my apology for not 'talking to you' for quite some time.  It may be more than presumptuous of me to think that you are interested in what I may have to say.  However, for those who are, this is something that I have been mulling over for quite some time - the Unwritten Rule Book.

For a book of rules that is so illusive, it wields a tremendous amount of power and influence.  I've never seen this 'book' but have certainly been made aware of the 'rules' for families of addicted loved ones.  Here are some of which I have become painfully aware (not ranked according to importance, just as they come to mind):

1- If  the parent of a child is under the age of 18 who is sick makes sure they get the proper medical attention, he or she is a 'good and loving parent'.  Once they become "an adult", albeit one who has a brain disease called addiction, efforts to access the best care possible are 'co-dependent' and 'enabling' behaviors.

2 - If your loved one has the disease of addiction and they overdose, it's acceptable to reverse that overdose one time.  If they overdose after that, using Narcan (Naloxone), that is encouraging their drug use. 

3 - If the person who is addicted behaves in a manner that is dictated by their disease, discharging them from treatment is the remedy. 

4 - Since treatment for addiction is not always successful, it's a waste of time and money to provide access to it.

5 - Not everyone will survive the disease of addiction and we need to practice acceptance.

6 - It's acceptable for physicians to choose not to treat the disease of addiction. 

7 - What's the big deal?  Just arrest them! Punishment by incarceration is what's needed for this disease.  Once they have suffered enough consequences, they will "get it".

8 - The person must 'want' treatment.  Otherwise, it won't be successful.

9 - Loved ones try to intervene so 'they' will feel better.  It is of little or no benefit to the person who is addicted.

10 - Addiction is a choice.  If they "want" it bad enough, they will recover.

I never thought that Casey would die from a 'socially unacceptable' disease, a disease that is shrouded in myths/unwritten rules that continue to dictate the treatment available to a person who is addicted.  All other chronic illnesses have an established standard of care that promotes health and healing.  Addiction on the other hand is defined as a disease and treated as a crime. Where does our hope lie for a paradigm shift?  I believe it will come from families like ours, families like the ones who changed the attitudes and perceptions about AIDS or like the efforts of MADD.  

I hope that one day we will look back with wonder and amazement at how far we have come in advancing the science of addiction and erasing the stigma, the stigma that must have been a contributor to The Unwritten Rule Book. 

Until next time. . .

Casey's mom