I'm pleased to have this essay selected as a "Staff Pick" for Addiction [Unscripted] Go to the link; read, comment, and share. Thanks.
Friday, May 20, 2016
Margot and I spent this past Wednesday and Thursday traveling to Washington, DC to testify before the House Bipartisan Task Force to Combat the Heroin Epidemic: Families Impacted by Addiction, led by Congresswoman Ann Custer, NH and Frank Guinta, NH. Wednesday night we went to a reception for the 129 families we joined in DC for CARA Family Day. We got a chance to talk with Sens. Kelly Ayotte of NH, Amy Klobuchar of MN, and Rep. Tim Ryan of OH. All have been longtime sponsors and leaders in moving CARA along. Thursday we participated in the CARA Family Day. We began with a morning press conference outside the Capitol and had a chance to talk with Sen. Rob Portman of OH and Congresswoman Sheila Jackson Lee of TX. We were interviewed by DC Patch http://bit.ly/25dMiO8, met with aides to New York Senators Schumer and Gillebrand and Congressman Nadler. Thanks to our friend Carol McDaid we had lunch with Dr. Oz, giving us an opportunity to share our story and help educate him some more about addiction. We then taped an interview for the Addiction Policy Forum. We were accompanied for much of this by the most capable and wonderful Courtney Hunter of the Partnership for Drug Free Kids. CARA will continue to need everyone's attention and support if it is to pass and BE APPROPRIATELY FUNDED. Stay tuned everyone. The entire event was put together by Jessica Nickel and Casey Elliott of the Addiction Policy Forum, a remarkable achievement. They were the most important leaders we came across during our two days.
Friday, April 29, 2016
William L. White is a hero of mine. His site is always a wealth of information. A while back Bill published an essay of mine, "Pinball" in which I wrote about my son lost to heroin: "I have recently come up with the idea of writing a letter to everyone who helped treat William along the tortuous descent to his....[death]. I want to ask them whether his death has given them any cause to reflect upon his treatment. If so, what have they learned? Big ideas or tiny changes in practice? What change might they like to bring about so that others might not only avoid his fate, but actually entertain a productive lifelong recovery? My suspicion is that very few, if any, have reflected much on William and his treatment. Given a lack of time or effort devoted to reflection, I suspect precious little, if anything, has been learned. I am talking about good, well-intentioned people who have dedicated their lives to important work. But is it work so trapped in orthodoxy of practice, work so mired in bureaucracy, that it leaves little time for introspection? How much are those who treat substance use disorder just like those they hope to cure, repeating the same behavior over and over? We ask addicts to look at what they do. We need to ask treatment providers to take a harder look at what they do. Or how about, just a look?"
It seems to me more calls to clinical humility are in order. Here' a good start. Thank you Bill and thank you Chris Budnick.
It seems to me more calls to clinical humility are in order. Here' a good start. Thank you Bill and thank you Chris Budnick.
Sunday, April 17, 2016
I sent the following response to Lorne Michaels of Saturday Night Live after they aired a “commercial” for “Heroin AM”. Should you be so inclined his e-mail address is below.
Dear Mr. Michaels:
The young man pictured below is my son, William. He might have found your Heroin AM "advertisement" funny. We'll never know. Unfortunately, he was not alive last night to view SNL. This picture was taken on October 20th, 2012. It was taken four days after his insurance company, Emblem Health and their utilization review provider, ValueOptions denied him the in-patient detoxification services he requested. THERE'S SOME COMIC MATERIAL FOR YOU! He accidentally overdosed and spent the next six weeks hospitalized before we made our decision to remove him from life support, because he would spend the rest of his life in a persistent vegetative state. THERE'S SOME COMIC MATERIAL FOR YOU! Like thousands of other grieving parents his mother and I have had to cope with the loss of our son. THERE'S SOME COMIC MATERIAL FOR YOU! As advocates in the fight against substance use disorder, his mother and I have spoken to two Congressional committees, a U. S. Senate Forum on Addiction, and at the National Institute on Drug Abuse. THERE'S SOME COMIC MATERIAL FOR YOU! You can go here to watch what we had to say at the Senate Forum. It's had just above 5,400 views. http://bit.ly/1zgE7O3 MAYBE THERE WILL BE USEFUL COMIC MATERIAL FOR YOU THERE. Not the SIZE audience SNL gets, I grant you, but we're working on it.
While we work on increasing the awareness of our audience to the heroin and opioid epidemic that confronts this country; while we alert our audience to the fact that opioids and heroin kill 129 people daily - more than die in automobile accidents; while we remind people that nearly 10% of the population at large (including your staff, your performers, and your audience) has had, has, or will suffer from substance use disorder; we promise to do our best to diminish your audience. MAYBE THERE WILL BE USEFUL COMIC MATERIAL FOR YOU IN THAT!! I'm sure your advertisers will see the humor in it!
We will do our best to encourage the 23 million people in long term recovery to boycott both your show, your advertisers, and your network. We will do our best to encourage the 23 million people currently suffering from substance use disorder to boycott your show, your advertisers, and your network. We will do our best to encourage the millions of family members affected by this disease to boycott your show, your advertisers, and your network. YOU CAN CHUCKLE ABOUT THAT. We're not.
Consider my television permanently turned off to your show. Kindly inform your sponsors I will no longer be purchasing their products. Know that I WILL be encouraging anyone I can reach to do the same. When we say WILL at our house we remember a lost boy named Will and we take action. Unless, of course, you try some new material and air an apology. Allow me to suggest a sincere and well thought out public service announcement. Perhaps something your network could air. Should you do so, let me know. I'll be happy to watch.
Feel free to share your thoughts with Mr. Michaels at: firstname.lastname@example.org
Tuesday, April 5, 2016
I sent this to the editor of the River Reporter in Sullivan County, New York. While a rural area, including part of the Catskill State Park, the county is besieged by drug problems. New York's legislators are still slow to grasp the enormity of the problem.
In early February I joined several hundred Recovery advocates to meet with lawmakers in Albany. We told our stories of an addiction epidemic that is killing 362 people daily in our communities, stories of struggle, recurrence of the disease, lack of services, incarceration, and unspeakable loss. At the time I wrote about some of these stories on Medium. You can go here: http://bit.ly/1oyuNVu
When we met with lawmakers in Albany we were told that our request to add $50 million additional dollars to a grossly underfunded OASAS budget to support Recovery Community Organizations, Recovery Community enters Recovery Coaches, and Family Support Navigators was a reasonable and rational request.
More recently the subcommittee for Mental Health decided that $15 million in additional funds for the Executive Budget was an appropriate response to the greatest public health crisis the nation has seen in decades. This insignificant amount of money on the budget table to address the most deadly (and stigmatized) epidemic to hit New Yorkers since the AIDS crisis isn’t nearly enough.
My Easter began Good Friday with a phone call from a distraught mother looking for help, trying to get her daughter into long-term rehabilitation. Shortly after I talked with another mother whose son is struggling to find adequate long-term recovery services. Both have stories of substandard treatment in Sullivan County facilities. A county where the coroner reports that a quarter of all deaths are drug related. Today I had yet another call from a mother desperate to find adequate treatment that also meets the requirements of Sullivan County’s Drug Court.
Without recovery supports in place, our loved ones who receive addiction prevention and treatment services lack a continuum of care for their illness. This means that when they return to our communities sustained recovery from the disease of addiction becomes extremely difficult – their disease reoccurs, they may break the law or even die. The broken system is a setup for failure! We must invest in the infrastructure of recovery supports.
It’s easy to give well-meaning but empty platitudes to a distraught mother or father who have lost their child when they beg lawmakers for help in addressing the number one killer among people aged 18 -24. But they deserve more. Our families deserve action. New York families need more than just words. We need the necessary resources put into the NYS OASAS budget so that our loved ones don’t continue to die.
23 million Americans are now living in recovery from the disease of addiction. That’s 23 million taxpayers who are contributing to their communities. These people who have successfully battled their disease of addiction are no longer a tax-drain on our communities, rather they are functioning, productive members of society. They have jobs, families of their own, and lives filled with hope and purpose. They are living miracles – people who were able to overcome a once helpless and hopeless addiction – to live a life transformed into one of health and wellness.
With 22 million Americans living with active addiction, the solution of recovery is not only possible; it must be made available to anyone who needs it. The key is that our leaders must be willing to invest financially to address the problem of addiction now. It’s time to stop talking and start investing so another family like mine doesn’t lose a loved one to the chronic, progressive, and too often fatal disease of addiction.
We need to make addiction recovery a priority now and it starts with the budget.
I am registered and I vote.
Lew Beach NY
Thursday, February 18, 2016
Tip of the Iceberg
I’ve been to a number of rallies, advocacy days, conferences and meetings about substance use disorder/addiction. Call it what you will, it comes down to the same horrible disease. I am always moved and impressed by people who can bravely introduce themselves and say, “I’ve been in recovery for _________.” The blank gets filled in with a figure that can range from decades to days. They sometimes define what recovery means to them, for instance, “No mood or mind altering substances of any kind.” Whether you are Michael Botticelli or (even especially) a shy young person sitting on the outer edge of a meeting, these are courageous, hopeful, and inspiring statements.
I, too, am in recovery. Recovery of a different sort. Recovery from the loss of my son to an accidental heroin overdose. For me that currently means just over three years and two months of an ever-present grief. I say this not to appropriate the language of those who have successfully confronted the deadly disease of addiction, but rather as a grim reminder that there are fatalities in our wake as all of us in our recoveries work together toward solutions and a better time. Worse yet, far too many celebrate substance recovery and endure grief recovery simultaneously.
Recently I sat in a state senator’s office with eight other people, working to impress a legislative aide on the need for more spending on addiction resources and the need to keep those brought to emergency rooms following overdoses for a period of at least 72 hours of observation. We also urged support for legislation to mandate physician education on the disease of addiction to improve assessment skills, increase treatment referrals and, most importantly, revise opioid prescribing practices. Doctors need broad education regarding addiction, not just enlightenment on prescribing practices. As compelling as our arguments for these advances were, the stories people shared in the short space of a half hour were far more persuasive.
Two of us were nurses, one an LPN, the other an RN with long experience in critical care; one in long term recovery for 15 years, the other for 9. Two young people in long-term recovery were also there. They had seen firsthand too many friends succumb to overdoses. Indeed one had just lost a boyfriend of five years to an overdose only a month ago. She fought hard to tell her story calmly while the pain of her loss welled to the surface. Six of us were parents. Only one could tell of a child currently in treatment. While hopeful, it is a harrowing tale of incompetent and irresponsible treatment, relapses, overdoses, and great financial distress over a nine-year period. Another had a similar tale with a son currently incarcerated. “Safe” for now behind bars.
Four parents, including myself, told of how our children died. One, with both substance abuse problems and a psychiatric diagnosis (including suicidal ideation) was improperly discharged from a hospital. His mother was never notified he was released. She was notified a day later when he was found dead, having overdosed almost at the hospital doorstep. He was barely out the door before he found a dealer. In my case, our son requested in-patient detoxification, because was using both heroin and benzodiazepines. His insurers, Emblem Health/HIP and their utilization review subcontractor Value Options, denied him treatment, claiming in-patient treatment was not “medically necessary.” He overdosed in a Starbucks within two hours of his denial, was revived with Narcan, hospitalized and released the same day – all without our knowledge. Four days later he overdosed again, this time fatally, following six weeks of hospitalization and a traumatic bedside vigil for our family.
Indeed, there was a palpable shudder in the room as the topic of insurance and insurance companies came up. I have no doubt that we could have contributed to a lengthy discussion on the hurdles involved in obtaining and maintaining even minimal insurance coverage, let alone coverage that would actually provide treatment long enough to offer a chance at lasting recovery.
One of us now in long-term recovery reported being recently diagnosed with a medical condition. Despite knowing that this person had a history of substance use, the medication prescribed was a controlled substance. Was this ignorance, willful ignorance, or laziness on the part of a doctor?
Our meeting lasted half an hour. I suggested that the stories we were telling were merely the tip of an iceberg. We all had much more we could tell. Lifetimes of stories. That became ever more apparent as we shared tales with each other both before and after the meeting.
We were but nine people. Nine people who happened to be part of a much larger group lobbying state legislators in offices all over the capitol that day. Allow me to extend a metaphor. If we were a single iceberg, then the meetings going on around us were a large ice field. The loss, the collective devastation suffered by all there that day, could surely be called Titanic.
The course to recovery for all has a multitude of tragic tales in its wake. The good news and the great hope is how those who have suffered loss and those who have suffered from addiction and recovered are able and willing to come together, to cast off the stigma too often associated with the disease, and to work toward a common goal. We sail ahead, propelled by all too familiar stories.
Thursday, January 21, 2016
Next week the Senate Judiciary Committee will hold hearings on CARA - The Comprehensive Addiction and Recovery Act. As we all know, things move slowly in Washington. It is important that we all advocate for the passage of this act. Below is a letter I wrote to Senator Schumer, one of my New York Senators and a member of the Judiciary Committee.
Dear Senator Schumer:
A little over a year ago my wife, Margot Head, and I spoke at a U.S. Senate Addiction Forum in support of CARA. I write now to urge you to do your utmost to move that legislation through the Judiciary Committee and on towards a vote.
Having lost our son to heroin use, we are especially sensitive to the importance of CARA and any other legislation regarding Substance Use Disorder education, prevention, treatment and reform.
I invite you to listen to our Forum presentation: http://bit.ly/1zgE7O3
This past October I was invited by Dr. Nora Volkow to speak at a Recognition Ceremony for NIDA scientists and administrators. You can read what I had to say at that event here: http://bit.ly/1kpqwle
Finally, I was invited to write a guest blog on Dr. Volkow’s “Director’s Blog”. That essay appears here: http://1.usa.gov/1OwPNnD
I share all this with you to help you get a sense of the urgency needed in moving CARA along. Urgency that I hope you will impress upon Senate colleagues on both sides of the aisle.
If there is anything that Margot and I can do to assist you and your staff as we engage the plague of addiction, please know that we stand ready.
Many thanks for your kind attention to this epidemic, which feeds on silence. Those of us who do not speak up are in some way ourselves afflicted with addiction.
Sincerely yours –
New York City