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,
Charlotte

 

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. . .

Peace,
Charlotte
Casey's mom


Sunday, September 9, 2012

Ten Years Later

It's been 10 years since we lost Casey to the disease of addiction.  I don't know where those years have gone or that there could possibly have been 10 of them.  I do know that it will not matter how many years pass.  I will always grieve for him and miss him terribly each and every day of my life.  My heart will be broken forever. 

As I reflect on the past 10 years, I am encouraged by the strides we have made in raising awareness about the disease of addiction so that treatment and recovery resources are becoming more accessible.  I said more accessible, not nearly as accessible as the need requires.  We now have 10 Recovery Kentucky centers in operation, 5 for men and 5 for women, with plans for 4 more in the hopefully, the very near future.  That's currently 1,000 beds that were not available 10 years ago.

Intervention has become a more familiar word because of the television program by the same name.  So, whether or not families choose to use this tool to get their loved one into treatment, at least the family is aware that the option exists and more importantly the correct protocol for a successful intervention.  That's more than I knew when we learned of Casey disease.  This is another step in the right direction.

The number of petitions filed for Casey's Law have continued to increase meaning that more families are aware of this intervention tool that became effective July 13, 2004 in the state of Kentucky and are using it for the benefit of their loved ones.  I know that we now have more people living with addiction rather than dying from it in part because of Casey and the law that was inspired by his life and death.

I have grieved by being an activist, an activist that has been blessed by the many individuals who have traveled this road with me for the past 10 years.  I am grateful to have had the opportunity to be a part of Transitions, Inc.  My office is now in the building for which I was hired to build community support, Transitions Grateful Life Center.  It is a blessing to be greeted by the smiling faces of young men who, while they remind me so much of Casey, have an opportunity that was not available to him 10 years ago. 

My goal of having a program about addiction on television has been realized in the past 10 years as I have served for the past 6 as co-host and host of a community cable show called "Guide to Feeling Better".  It is produced by Mental Health America of Northern Kentucky's Mental Health and Substance Use Awareness Committee and sponsored in part by Transitions.  It is my honor and privilege to interview some of the most knowledgeable and impressive individuals who are known locally and nationally as experts in the field of mental health and substance use disorders.  Now, families have more access to programming on topics directly related to the disease of addiction.  Our programs can be viewed on local community cable stations and are archived online at www.guidetofeelingbetter.org

And there's more. . . . More rallies for recovery in recognition of September's National Recovery Month are being hosted around the country.  Transitions will host it's third rally this month on Saturday, September 15th in Shelter #2 at Pioneer Park from 11:00 a.m. until 3:00 p.m.  

This year will be the first of the National Anti-Heroin Rally & Memorial in Northern Kentucky held at the Amphitheater in Devou Park on Saturday, September 15th from 10:00 a.m. until 1:00 p.m. 

The 3rd Annual Vigil will be held on Thursday, November 8th at 7:00 p.m. at Transitions Grateful Life Center. This vigil is sponsored by Transitions and PEACE (People Enduring Addiction Consequences Everyday).   Our PEACE grief support group has been in existence for 9 of those 10 years and continues to gain members.  We are grieved by the death that brings a family to us but grateful when they find comfort and healing with our love and support.

This coming Thursday an independent documentary, "Cole", will be shown at Transitions Grateful Life Center at 7:00 p.m.  It's a story of friendship and loss.  It's a story that puts a face on addiction, opens the door to conversation about the disease and honors the life that was taken because of it.

All of these are examples of steps we can take to eradicate the shame, stigma and discrimination that surrounds the disease of addiction.  These are the barriers that keep addiction a secret and people sick.  We must break this vicious and deadly cycle because if nothing changes, nothing changes.

I am so very grateful that there have been changes, life-saving changes.  Thank you for whatever you have done and continue to do to further awareness of this disease and in doing so increase prevention, treatment and recovery resources for other families.

Until next time. . . .

Peace,
Charlotte
Casey's mom



Saturday, April 9, 2011

Moms on a Mission

On March 7th the Mother's Council celebrated their first anniversary. The Mother's Council was organized to raise awareness about the disease of addiction, diminish the stigma associated with the disease and raise funds for the Center for Chemical Addiction Treatment (CCAT). I was very honored to be asked to speak at this 1st anniversary celebration and to be among a group of fifty or more people who are committed to making a difference. The audience was comprised not only of moms who have children still living with the disease but also moms who have lost their children to the disease. In fact, a name change was suggested to encompass all the other family members in attendance, including dads, brothers and sisters, who are also committed to the cause. The group has accomplished a lot in one short year. Regardless of the name, who knows what will be achieved by these individuals on a mission. For some, the need to become involved comes after the death of a child. With the death comes a compelling need, the need to have their child remembered, the need to let others know that their child was here and that they mattered. It is that very need that can keep the parent(s) living, living passionately on purpose. For me, Casey's Law was a result of that passion. Casey died and an advocate was born. I became a 'mom on a mission', a loose cannon, shooting off in all directions, hoping I would hit something. Being a 'mom on a mission' is not for the faint of heart and can be painfully daunting. However, when I receive a call or an email from a family who has used Casey's Law to intervene on their loved one, that purpose is affirmed and my strength is renewed. Sharon Blair and Kathy Sturwold are other moms who are also on a mission. You can follow their efforts to get involuntary treatment laws passed in Indiana and Ohio (respectively) on links found on the home page. Whether you consider yourself a 'mom on a mission' or not, I hope that you will find your own way of advocating for recovery from the disease of addiction. I am firmly convinced that, more than anything else, it will be families who will make a difference in how this disease is treated. It will be us who will make it OK to talk about this disease so that someday soon, people with addiction will be treated as anyone else who has a chronic, progressive, potentially fatal illness. Remember what happened when people started talking openly about cancer. Just imagine. . . . Until next time. . . . Casey's mom

Thursday, February 17, 2011

You Are Not Alone When the Darkness Falls

"You are not alone when the darkness falls", a quote from Dr. Franklin O. Smith, M.D. , Cincinnati Children's Hospital Medical Center, was spoken at a one-day conference offered free by The Leukemia & Lymphoma Society. He was referring to those who are living with cancer, specifically blood cancers like the one that Casey's dad is surviving. This was the second of these conferences that we have attended since the diagnosis was made almost 3 years ago. As I listened to the speakers, I was comparing and contrasting the way cancer is talked about and treated with the disease of addiction.

Since Dr. Smith's topic was New Drug Development for Cancer, he focused on how long it takes to development new drugs and why the drugs are needed. I'm sure that there were several among the more than 170 in attendance, including Casey's dad, who are alive today because of the clinical trials for new drugs to treat their disease. In contrast, drugs that have been developed for the treatment of addiction are often met with opposition because they have not been a part of treatment modalities used in the past. This response totally disregards the fact that the new medication(s) may be what saves a person's life and that without this assistance, the person's chances of survival may be slim to none.

He also spoke of the efficacy of the modalities that had been previously used to treat childhood cancer. He concluded that the "future does not lie with these modalities". When and until we have a 100% success rate with addiction, we have reason to actively pursue other modalities of treatment for this disease as well. It is blatantly obvious that there is room for improvement in how we treat addiction.

Why does this resonate with me? During our crisis with Casey's disease, there were many meetings where the statement was read that "addiction is a disease much like cancer and diabetes". I believed and know now that is true. I thought at the time that would translate into the same kind of help and support for the disease of addiction. We quickly learned that was not the case.

As I reflected on this conference, I was thinking of all the families who are painfully aware of what it means to feel "alone when the darkness falls". I was trying to remember if I had ever heard of a conference for families on the disease of addiction, new treatments, treatment and recovery resources, a conference that would offer an opportunity to network and join with other families so they too can know that they "are not alone when the darkness falls". Honestly, I could not think of a single one.

There are many conferences for professionals in the field that are only advertised to that specific audience. There are none that I know of that offer a day of vital information and support for the families living with addiction. It was the summer that Casey died that I found out about The Kentucky School of Alcohol and Other Drug Studies at Northern Kentucky University. At that point, it had been held at Northern for about twenty years or more! Since then, I have missed only one year of the school and gained a wealth of information from the outstanding presenters who participate. This year's school will be held from July 17th - 21st.

This conference on blood cancers was about hope, hope for survival. Surviving the disease of addiction and living in recovery is also all about HOPE. My hope is that addiction will very soon be treated as a disease, much like cancer and diabetes.

Until next time. . . .

Peace,
Charlotte
Casey's mom

Wednesday, January 26, 2011

Let the Blogging Begin

Today seems to be the day for the blogging to begin. The announcement today at the 2nd Annual Faces of Drug Abuse Conference in Lexington, KY that the blog was regularly updated really put the pressure on to get with it.

It was my privilege to be the keynote speaker at the closing session of the conference. I was honored to be listed among most impressive keynote speakers who were part of this 2-day conference. You may want to read about them on the conference website.

There were close to 200 people in attendance at the last session even though the weather in Lexington this morning was not the best and some attendees had left for home. The audience was a good representation of professions and people working in the field of substance use disorders, very attentive and most gracious. Due to the inclement weather, there were many who left immediately after my presentation. However, there were several people who came up to offer their condolences for the lose of Casey and most of them also had questions about how they or someone in their family could help a loved one. While it is discouraging to hear that after 6 years there are still people who have never heard of Casey's Law, I am always grateful that now they do.

It is always emotionally draining to relive Casey's addiction and revisit all the barriers we faced in trying to get him the help he needed. However, it is also always a blessing to have the opportunity to talk about Casey. As I said today, he will always be my son and I'll always be his mom.

I would once again express my thanks to the presenters and sponsors of this conference. This event offered a great opportunity for learning about the dangers of drugs, prevention strategies, intervention tools, and treatment and recovery resources. That's a good thing.

It has always been my experience that when people of like mind come together in one place there is an energy generated that just can't be duplicated any other way. I hope that those present were encouraged, rejuvenated and that their resolve to make a difference was strengthened as mine was today.

Until next time. . . .

Peace,
Charlotte
Casey's mom