On Friday, April 4th, Margot and I spoke at a
briefing held by the House Caucus on Addiction, Treatment, and Recovery. We are grateful to Congressmen Ryan,
Fleming, and Tonko for holding this important discussion. The texts of our presentations are
below. We can only hope this
appearance sparks more discussion and awareness everywhere.
Margot Head to House Caucus on Addiction, Treatment and Recovery
April 4, 2012
Health insurance companies are killing our children; I use
children in the sense that everyone, regardless of age, is the child of someone. And the understudies to the killer
insurance companies are the hospitals and the so-called rehab places.
Our 24 year old son William had a substance use disorder; or
as the population at large would say, “He was an addict”. In this case a heroin
addict. His case happened not to
be related to prescription opioids..plain street heroin in the little plastic
glassine bags.
William had had at least 15 overdoses in 2012 and 19
emergency transports to hospitals in 2012. In October of that year William succumbed to a final and
ultimately fatal overdose.
Following that overdose William spent six weeks in a NYC hospital until
it was absolutely confirmed that he would never wake up and was consigned to a
“persistent vegetative state”. William’s brain had been deprived of oxygen for
too long in that overdose.
Here’s what else:
4 days prior to that last overdose William had gone to the chemical
dependency unit of another
hospital and asked to be admitted for INpatient detoxification..The lab
work at that particular hospital gave Will the diagnosis of 304.80 which means
polysubstance dependence. In our son’s case polysubstance meant heroin and Benzodiazepines. Our son’s other substances were
marijuana and alcohol; all of these drugs are “downers”…in his case anxiety
–palliatives. There can be no
doubt that William was self- medicating.
Back to the request for INpatient detox at this one hospital.
William spent hours there waiting for pre approval from his insurance company.
Despite William’s DX of polysubstance abuse, some functionary at insurance, who
probably didn’t know how to read, or interpret records, DENIED William
authorization for INpatient detox, and would only approve outpatient methadone
maintenance. Will had already flunked at least 4
outpatient rehabs/detoxes. He declined their offer of oupatient methadone
maintenance. William knew methadone is harder to get off of than heroin
and I suspect that he knew that
this outpatient bit was killing him. I did NOT know these health insurance companies had a license
to practice medicine.
When the hospital found out it was not going to get paid, it
sent William to a public hospital to get detox. William ‘yessed’ them, left and
called his dealer; we know that from his cell phone record. He got high and
came home 10 hours with heroin raccoon eyes..big black circles. I have heard a rule that if an addict
requests help, the help has to be done in
the moment, not 2 seconds, minutes, hours, days or months later. Substance abuser’s brains are hijacked by the craving for
their drug or drugs.
One other true story: A mere 6 hours before William
requested that denied INpatient detox, he had been released from another
hospital emergency room. The attending doctor at that hospital wrote, “I do
believe patient is at risk of overdosing on heroin, however he does not meet
criteria for involuntary psychiatric hospitalization and rather should pursue
inpatient rehab which he is refusing. Discharged from ER. Axis 1 Opioid
dependence.”
One more similar narrative, of many, is that one month
before all of the above happened, William had been in yet a different emergency
room. A wise and experienced doctor wrote on his records that he “was a danger
to himself and others” and told me on the phone that he should be detained
against his will. The young
ATTENDING physician released him anyway. William , I and his dad had a meeting w/
this doctor prior to the discharge; we think he knew nothing about addiction.
And the only reason I have a lot of the above information is
that I had to get a court order to obtain records. I also know that insurance paid hundreds of thousands of
dollars on our son and was billed in the area of half a million. It certainly
was good they saved money on that INpatient detox.
Bill Williams’ Presentation to House
Caucus on Addiction Treatment and Recovery 4/4/14
In early December of 2012 our son, William, entered
Columbia University’s College of Physicians and Surgeons at the age of 24. His arrival there was off the beaten
track, beginning with visits to a psychotherapist. Over the next two
years stops on the way included an addiction psychiatrist, out-patient
treatment, treatment with Suboxone, in-patient detox, in-patient treatment,
out-patient treatment, out-patient detox, treatment with Vivitrol, more
out-patient treatment, another in-patient treatment, more out-patient
treatment, a revolving door of well over a dozen trips to and from the
emergency rooms of at least four different hospitals, an attempt to work with
another addiction psychiatrist, Alcoholics Anonymous, Narcotics Anonymous, and
a home life fraught with tension and despair, sometimes hopeful during
intermittent periods of sobriety, and always filled with the apprehension of misfortune.
His credentials for Columbia were unorthodox, “acute and
chronic substance abuse” which caused “complications of acute heroin intoxication”. William was admitted, not as a medical
student, but as an anatomical donation. A cadaver. His credentials came from his death certificate, not any
academic transcript.
As a result of his acute intoxication, when his heart
stopped beating for too long, when he was hospitalized for six weeks until it
became clear that William had withered to a vegetative state, we made the
decision to remove him from life support and have him become an organ
donor. Organ donation for someone
in a vegetative state requires an expedient demise. William did not expire within the necessary one-hour time
frame, though his mother, sister and I were with him in the operating room,
telling him he could let go.
Rather, he lasted another 21 hours before drawing his last breath in our
arms.
Determined that his death not be in vain, his mother, sister
and I made the following pledge:
“We promise to do everything in our power to educate and inform people
about drug abuse and its prevention, to provide ever more enlightened treatment
for addicts, to help make treatment options for addicts more readily available,
and to remove the stain of shame surrounding
this disease.” A very first step
to honor that pledge was the anatomical donation of William’s body. We continue to honor that pledge by appearing
before you today.
Shortly after we were invited to appear at this briefing we
received another invitation.
William’s contribution at Columbia has reached an end. This coming Wednesday his family,
including his seven week old niece who will only know him by story and
photographs, has been invited to a ceremony at Columbia honoring those whose
bodies helped train and educate this year’s class of medical students. We will meet and hear from these medical
students, their professors, and other families who have donated kin. We will have an opportunity to speak to
them. What we say to them will
differ little from what we say to you today, which is to say that ignorance
about substance use disorder remains the order of the day. It is the plague of
our time. Anything we say that is
repetition bears repetition until it manifests itself as policy change and
practice of substance and consequence.
Parity is about more than receiving equal health care
insurance for substance use disorder and mental health issues.
·
Parity means an individual can say, “I have a
substance use disorder,” without discrimination, judgment or censure. Parity is when family members can stand
beside the afflicted and say, “…and we are all getting counseling and support
to aid in our loved one’s recovery.”
·
Parity means that substance use disorder is
recognized by laymen and professionals alike as a brain disease.
·
Parity means that funding for research for
substance use disorder is on the same level as that for heart disease, cancer,
or diabetes.
·
Parity means that people with substance abuse
disorder are treated with the same compassion and understanding, treated with
the same urgency, accorded the same dignity, as any other patient with any
other medical or surgical need.
·
Parity is when physicians, not health insurers
practice addiction medicine, when physicians, not actuaries determine the best
course of treatment.
·
Parity is when physicians are trained to
recognize and treat substance use disorder in medical school with the same
rigor given to any other disease.
·
Parity will be when physicians in any specialty
can recognize, treat, or refer patients to a proper source of treatment.
·
Parity will be when there are sufficient numbers
of physicians board certified in addiction medicine.
·
Parity will become practice when more than a
mere 10% of the 23 million plus Americans who suffer from substance abuse
disorder are properly diagnosed and treated.
·
Parity will come about when rehabilitation
facilities have medical doctors on staff, all the time.
·
Parity is when physicians, politicians, school
principals, police and parents all realize that not only are they responsible
for helping to treat this disease, but also that they and their families are as
susceptible as anyone else to being afflicted by the disease.
·
Parity will arrive when we stop pretending will
power is a cure for a neurological problem. Will power needs to be exercised, not by the afflicted, but
by policy makers who can help change the course of this epidemic.
We are, indeed, in the midst of an
epidemic. Data, like much else in
the treatment of substance use disorder, is slow to arrive. However, we do know that overall,
overdose deaths from pills and heroin now exceed automobile deaths in this
country. Every day, 105 people die
of drug and alcohol overdoses in this country. While the latest data is from 2010, it is most likely that
the number of drug deaths in 2014 exceeds the number of deaths at the height of
the AIDS epidemic.
William’s cause of death could have been
listed as “Institutional Indifference”.
Failed insurance, clumsy coordination between health care providers, and
antiquated treatment practices doomed him.
In another time, in a better era, William
might have entered the College of Physicians and Surgeons, not as a cadaver,
but as a gifted and talented young man, prepared to serve others.
We ask you as a body to summon the will
power to make these possibilities realities.
We WILL prevail.
Thank you.
