A Grieving Parent on Parity
Parents who have lost children to addiction are speaking publicly in unprecedented numbers. Their stories provide a biting critique of addiction treatment as a system of care–and suggestions that addiction treatment has yet to operate as a “system of care”. They also provide painful accounts of how fiscal gatekeepers operate to restrict access to care and prevent continuity of care at times that such access and continuity are most critical. On April 4, 2014, Bill Williams testified before the Bi-partisan Congressional Alcohol, Treatment and Recovery Caucus co-chaired by Representative Tim Ryan (D-Ohio) and Representative John Fleming (R-Louisiana). Bill shared the experiences he and his wife Margot encountered in their unrelenting efforts to get needed help for their son, William. Bill’s eloquent testimony is offered here without further commentary.
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.
For additional writings from Bill Williams, click here.