My name is Amy Cavanaugh, I am a 53 year old retirement plan consultant, a grandmother and a community leader who was a caregiver to a pain patient until he lost his life as a direct result of prescription pain pills which were prescribed as part of his course of treatment for leukemia.
Prior to his diagnosis, my husband was a pain patient due to a car accident. The neurological damage he sustained caused migraines, tremors and chronic pain. In order to have a quality of life, Keith avoided opiates and prescription pain medication and relied upon cannabis for pain management.
He preferred cannabis to pain pills because when prescribed pain pills over the years, they tended to put him in a stupor, impaired his driving and were long lasting as well as very addictive. It was easier for him to control his pain and the amount of medication he took with cannabis. Historically, he would quickly build up a tolerance to the pills. They caused him to hallucinate and when they wore off, he experienced significant mood swings which affected his relationships. Withdrawal from these pills was complicated and physically grueling. Cannabis assured a quality of life not offered by pain pills.
He used cannabis even though he had over 30 years of sobriety in AA. Because he was using it as medicine, he did not see his use as breaking his sobriety any more than taking any other type of medication. Largely, his use was without incident; however in 2005, upon a routine traffic stop, the officer found a small amount of cannabis in his car. He was arrested and at his attorney’s suggestion, entered a pre-trial intervention program, thus avoiding jail time. As part of the PTI, he was required to attend substance abuse classes. There were several problems with this. For one, as a pain patient, some days he did not feel well enough to attend the class, however, failure to do so, would void the agreement. Secondly, he was treated as an addict. When he explained that he was sober and not an addict and this was his medicine, the facilitators took this to mean he was in denial with respect to his addiction. Also, because of the other medications he was on, he would routinely fail the required drug test, not to mention was now in chronic pain because he could not use cannabis and did not want to resort to pain pills. Lastly, this was in South Florida where there was at the time a severe crisis with respect to the abuse of pills and other hard drugs, therefore, he was taking up a seat that would have been better used for a sick and suffering addict trying to beat their addiction. In short, the program was a waste of time and money and had a direct impact on his health.
Eventually, the staff stopped trying to put a square peg in a round hole. His special circumstances were placing undue burdens on the program and the counselors and detracted from those who needed help with their addictions. As a result the case was dropped, but only after having spent a great deal of time, money and discomfort in attempting to meet his PTI obligations.
Keith continued to medicate using cannabis with his doctor’s knowledge. While his doctor’s could not prescribe the cannabis, most of his doctors felt that it was preferable to pain pills. At one point, he was prescribed Marinol, which is synthesized THC found in the cannabis plant. His experience was that it was less effective, he experienced more side effects and the prescription drug was very expensive.
In 2010 when Keith was diagnosed with leukemia, he was frequently hospitalized. This meant he was in and out of the hospital for treatment. This also meant that he was no longer able to medicate with cannabis. Sadly, his oncologists prescribed OxyContin as well as other powerful pain medications. Quickly, he became addicted and while he did not “doctor shop” or obtain the pills illegally, he always had extras because while in the hospital he took the hospital’s medication, leaving him extras from his prescription at home. As time when on, he needed more and more pills and the doctors, wanting him to be comfortable were very liberal in prescribing them. They seemed unaware of his increased dependence or of the fact that he was building a tolerance to the pills. As he complained, they would up the dosage and supplement his extended release pills with short acting pills for “breakthrough” pain.
It became clear that he was quickly becoming dangerously addicted to these pills; they were controlling him, affecting his mood and in the end took his life. Several times, when I was not in the hospital room, he managed to take far more than he had been prescribed. Sadly, one such incident resulted in him going into respiratory failure and being transferred to ICU for 6 weeks and while he survived this overdose, by this time he was dangerously addicted to these pills and would go to any lengths to get more. He was also starting to experience organ failure from the massive doses of medications he was taking, not to mention, he was increasingly hostile and agitated. This resulted in him being prescribed even more drugs including heavy duty tranquilizers and anti psychotics. His mood shifts made it increasingly difficult to be a caregiver. He would routinely be hostile to doctors, nurses and myself.
While Keith lived several more months, the side effects of these medications were interfering significantly with his rehabilitation. He seemed to always find a way to get more pills, whether he hid them or convinced someone he needed extras from home. In short, he was acting like an addict. He was incoherent and too drowsy to participate in physical therapy and it was hard for him to swallow which resulted in the insertion of a feeding tube. His condition continued to worsen and sadly, although his leukemia was in remission, Keith died on January 3, 2011. The cause of death was respiratory failure related to his dependence on these dangerous medications.
Obviously, I have a great deal of guilt and remorse that I did not do more. I was unaware of the dangers of these drugs. While I do not blame his doctors, I feel that they too were unaware of the true nature of these medications and merely prescribed these pills out of compassion. I do not think they understood how quickly a long term pain patient builds up a tolerance to these medication and how dangerously addictive the pills are and how difficult it is to withdrawal from these medications.
In recent years, Florida has become known as the OxyContin capital of the world, 85% of the Oxycontin in America is prescribed in Florida. Recently, Florida’s Attorney General has cracked down on pain clinics and the medical tourism that sprung up surrounding the unscrupulous prescription of these pills. Clinics are being shut down and pain clinic owners and doctors working at these clinics are facing criminal charges up to and including 1st Degree Murder. While this iniative is to be commended, it creates some unfortunate consequences for the pain patients in Florida.
In general, doctors are becoming increasingly guarded when prescribing these medications. In addition, less and less pharmacies are willing to fill these prescriptions because of the associated risk of prosecution as well as the associated criminal activity surrounding these pills. Many pharmacies are being forbidden from selling these pills, most recently, two CVS stores lost their right to sell narcotics in their pharmacies because the DEA felt that they were filling an inordinate number of prescriptions. It was not uncommon for me to have to go to 4 or 5 pharmacies before I found one that could fill the prescription. Also, if I dare run in dressed in sweatpants or casual clothes, I was profiled as an addict. Some pharmacies would not fill the prescription because he was not with me.
In short, the unintended consequence of the crackdown on pain pills, coupled with the fact that Florida does not have therapeutic cannabis laws on its books, has lead to the criminalization of pain and leaving pain patients with few alternatives. Pain patients become dangerously addicted to these medications and build up a tolerance. Doctors fear the consequences of over prescribing these medications; this means that pain patients are more likely to seek out illegal means of obtaining more and more pain relief. It has been noted, that since the crackdown, there has been increased use of street opiates such as heroin. Florida has some of the strictest cannabis laws in the country. Many pain patients and their caregivers are fearful of using cannabis for fear of incarceration of one or both of them. The Attorney General’s office does not seem to understand that many of those abusing the readily available pain pills by doctor shopping and such actually started on their road to addiction as a pain patient, and then in the blink of an eye when from a patient to an addict. Sadly, unless you are a pain patient or a caregiver to one, this would not be apparent to you. Largely, Florida’s crackdown on “pill mills” has been labeled a success, and lawmakers insist that nothing they have done impacts the ability of a legitimate pain patient to medicate their pain.
There is uneasiness in patient doctor communications when the subject of pain management is addressed. Pain cannot be measured like blood pressure or a heart rate; this leaves doctors to trust the patient with respect to their level of pain. Also, not all chronic pain patients look sick, this leaves doctors questioning the validity of their patient’s claims. Even doctors with long standing relationships with their patients are less and less willing to prescribe pain medication for fear of prosecution or malpractice litigation. What is worse, is that many patients are now physically dependant on these medications making it less likely that they will experience pain relief using less dangerous medications. There are few alternatives. Sadly, unlike 16 states in America, Florida does not have any type of medical cannabis laws on the books and judges have rarely agreed to the medical defense argument in presiding over the trials of cannabis patients.
There are over 10 fatal overdoses a day in Florida due to pain pills, on the other hand there has never been an overdose related to the use of cannabis. Those who do not support the use of cannabis for medical purposes claim that cannabis is a gateway drug or cite its addictive properties. A good example of the widespread misinformation was when Keith was in the hospital in Miami. When I spoke to a medical student about cannabis use as opposed to pain pills, she looked at me and said, “well cannabis is very addictive”. Actually, the hospital’s internet server blocked my access to internet sites discussing the medical use of cannabis. Sadly, it was in this hospital where Keith’s dangerous and powerful addiction first became apparent to me. In response to these skeptics I respond that today’s gateway to harder drugs is the medicine cabinet and any sort of dependence of cannabis pales in comparison to the addictive properties of pain medications. Again however, until you experience life with a patient addicted to these pills, it is impossible for bystanders to understand the stronghold these medications have on a patient and the far reaching consequences caused by addiction to prescription pills.
As a result of Keith’s death, I have become a vocal advocate for changing Florida’s cannabis laws as well as a spokesperson as to the dangers of pain pills. I speak to groups and elected officials about my experience and explain that despite what they might see, many people who sought out pain pills at pain clinics, many who doctor shop and many who resort to crime in order to obtain pain medication are actually in pain. I have also been forced to seek counseling to deal with the trauma I experienced when trying to be a caregiver to someone in the throw of such an addiction. There were arguments when I tried to monitor his dosage, I rarely slept for fear he would cause himself harm and I was accused by family members of abuse when he would contact them with stories of me withholding care or even abusing him because I attempted to regulate his overuse of these pills.
In short, very quickly it became the pain pills not the pain that was controlling his life. I am a cancer patient myself. I did not use cannabis because as a caregiver to Keith, I feared the consequences of being caught and also feared losing my job as we are subject to random drug testing at work. Had cannabis been legal, I would have much preferred to medicate with cannabis than the cocktail of pharmaceuticals that I was prescribed.
It is shameful the costs associated with Florida’s pain pill crisis, in terms of crime, treatment and law enforcement. What is more shameful is the number of lives that have been ruined in the process. Not just the user is affected by a dependence on pain pills. Family members, caregivers and loved ones are also victims. These pills cause mood swings and personality changes. Loved ones are forced to become the gatekeeper of the medications which can cause stress, agreements and even domestic violence. None of these unfortunate byproducts are true when a patient uses cannabis. The dependence is not physical, there is no associated withdrawal and there is no associated drastic shift in the demeanor of the patient.
As sad as I am about Keith’s death, I often think what my life would be like had he survived. He had become hopelessly addicted to these pills and would stop at nothing to get more. He would have faced a long hard road to detox off the pills and on top of his other medical problems, I am not sure he would have been able to kick the physical dependence. The price I paid because of prohibition has been high. I was forced to watch a loved one transform into a monster. I basically put my life on hold to focus on his treatment which was in itself successful, only to have him lose his life because of a failed and flawed war on drugs.
Keith was not a criminal nor is Amy!
www.ImaPatientNotaCriminal.org
Thank you Amy for sharing your story, we all stand beside you!
